It was our first official day here. And it isn't soooo bad. I've just learned that I need to take more charge of his care, which will really help me in the long run. This way when he's ready to come home, we'll be ready for him. The navigation of this place is a little weird, too. I'm able to get one complimentary meal a day, which I used for breakfast. Um, let's just say I won't be using those complimentary meal passes anymore and leave it at that. Is it bad if I miss hospital food?
The physical therapists came in to work with Christian today and it was great! They put him face down on a yoga ball and propped him up on his elbows, while holding his head. The PT remarked that it looked like he made an attempt to lift his head, which is awesome! They got him to relax and stretch and they even witnessed him go for his hand. Ha! See I'm not crazy. They did some stretches and joint compression and got him to bend his knee all the way! This is big because his legs are very stiff due to his tone. I can tell when Christian is upset or likes something by his heartbeat. If the rate is high, he's pissed. If it's low, he's loving it. At first he would get irritated by the new positions the PT was using, but then after he got used to it, he loved it! They worked him out and he was so relaxed, he fell asleep in the swing. Ahhh, what a hard day's work!
After that I was talking to the PT and she was really familiar with HBOT. She said she was going to suggest it for Christian. There is a transport team here that will transport patients to off campus appointments and the PT said they will transport him to HBOT! Hallelujah! I was so pumped up about my conversation with the PT that I called the HBOT center, set up an appointment, and went over there TODAY. Long story short we're starting Tuesday! I'm so excited for Christian.
I also got Christian to track just a little bit. This is getting his eyes to follow something. He wasn't too impressed by his rattle, which I'm not surprised by because he never liked that thing. So I started using his bright yellow Spongebob Squarepants and he actually tracked a little! The PT later told me that red and yellow colors are really great stimulants for vision. So Mama went out and got more Spongebob and Tickle Me Elmo stuff. It is his birthday tomorrow so these toys work out perfectly! Like I need an excuse to buy him something.
My baby is one tomorrow. I'm so thankful we have a birthday to celebrate. We won't be celebrating quite how I imagined it, but at least we're celebrating. All I need are my boys and Mama's happy. We are so blessed to have tomorrow. So blessed.
Friday, July 31, 2009
Thursday, July 30, 2009
A Gift.
Exhausted does not begin to cover this day. Let me start from the beginning...
We had our ultrasound, which confirmed what we already knew...we're having a baby girl! And her name will be Lola Magdalene. The name comes from a stubby sea turtle we met in Key West in June. The aquarium there has rescued animals and there were a few sea turtles who had been injured. Well, there was a sea turtle who got her little fin caught up in some fishing wire so she had a stub for her right, front "arm." But she got around just fine! And her name was Lola. When I heard that I thought, "That's It!" Magdalene is after my mother in law who is Magdalena, a great source of strength and faith for our family. I like that Lola Magdalene sounds like an old showgirl's name or something. She looks great, nice and active, and brain and heart parts are in tact. That's all we ask for.
After the ultrasound we got Christian ready to go. He road in his carseat strapped to a gurney to go up to Phoenix in the ambulance. I went up separately so I would have a vehicle in Phoenix, especially so I can visit the HBOT center.
And we're finally here.
When I got here, it was weird, I'm not going to lie. Christian was super agitated and the nurses don't know him so they don't know what positions work for him. His heart rate was up, he was warm and flush, I knew he was pissed as soon as I walked in the room. I repositioned him and took everything in. I was so lost and the only way to explain it is that I felt like we came so far in the PICU only to start over again at another institution. I use the word 'institution' because that's kind of what it feels like, which is surprising. Why am I surprised? Because I didn't know what to expect. The nurses and case managers at the hospital have never even been here and they could only go off of here say.
When I got here, I didn't know where anything was, the nurses are different. PICU nurses and doctors are so involved and they're just top of the line. It's totally different here. I'm sure the nurses here are good but we got so spoiled in the PICU. I met the Occupational Therapist and the Speech Therapist who will be working on oral stimulation. I mentioned to her that Christian had been making sucking motions and she got a pacifier for me so that if he starts to seem like he wants to cooperate, we can see what he can do with it. More on that later.
It was so overwhelming. A new place and then an agitated Christian equals verge of meltdown for Shauna. The OT started talking about how they have a pool for therapies that we could use, "Oh, but I know that must be hard at this point because that's what got him here. How long has it been?" I just lost it. Right in front of her and the social worker. I felt so lost and helpless and I didn't even have Manny and Gabe to come visit me to make me feel better. All of the sudden I was very alone.
There are a lot of sick kids here. Some are really severe and some are never going home. Some don't have families to go home to. I don't feel attached to this place like the PICU. I just want Christian home. But I am excited about the therapies he'll receive. And we're blessed that he will be coming home.
Oh yeah, more on the sucking thing. Well, Christian got some Tylenol after his agitation and he took a really long, much needed nap. When he woke up he was back to normal. So I started talking to him and putting the pacifier on his lips, in his mouth, around his mouth. He actually kind of responded and he was into it a little. I put the pacifier at the front of his mouth in front of his teeth and he began with the sucking motions. Then he voluntarily began to open his mouth for me to put his pacifier in. I could really tell he was liking the stimulation, he just can't quite figure all of it out yet. He had a pacifier from about 2 months to about 6 months. Then he spit it out and wouldn't take it again. I think he likes the pacifier, though, so I'm going to keep at it.
So here's to hoping for a better, less emotional, day tomorrow. Hopefully, Manny and Gabe can come visit.
Really, this day is a gift. I told Manny right after the accident that I didn't want to go home without Christian. So it's a gift that I got today. Although Christian left in an ambulance and me in my truck, we left the hospital completely in tact and ready for the journey ahead.
We had our ultrasound, which confirmed what we already knew...we're having a baby girl! And her name will be Lola Magdalene. The name comes from a stubby sea turtle we met in Key West in June. The aquarium there has rescued animals and there were a few sea turtles who had been injured. Well, there was a sea turtle who got her little fin caught up in some fishing wire so she had a stub for her right, front "arm." But she got around just fine! And her name was Lola. When I heard that I thought, "That's It!" Magdalene is after my mother in law who is Magdalena, a great source of strength and faith for our family. I like that Lola Magdalene sounds like an old showgirl's name or something. She looks great, nice and active, and brain and heart parts are in tact. That's all we ask for.
After the ultrasound we got Christian ready to go. He road in his carseat strapped to a gurney to go up to Phoenix in the ambulance. I went up separately so I would have a vehicle in Phoenix, especially so I can visit the HBOT center.
And we're finally here.
When I got here, it was weird, I'm not going to lie. Christian was super agitated and the nurses don't know him so they don't know what positions work for him. His heart rate was up, he was warm and flush, I knew he was pissed as soon as I walked in the room. I repositioned him and took everything in. I was so lost and the only way to explain it is that I felt like we came so far in the PICU only to start over again at another institution. I use the word 'institution' because that's kind of what it feels like, which is surprising. Why am I surprised? Because I didn't know what to expect. The nurses and case managers at the hospital have never even been here and they could only go off of here say.
When I got here, I didn't know where anything was, the nurses are different. PICU nurses and doctors are so involved and they're just top of the line. It's totally different here. I'm sure the nurses here are good but we got so spoiled in the PICU. I met the Occupational Therapist and the Speech Therapist who will be working on oral stimulation. I mentioned to her that Christian had been making sucking motions and she got a pacifier for me so that if he starts to seem like he wants to cooperate, we can see what he can do with it. More on that later.
It was so overwhelming. A new place and then an agitated Christian equals verge of meltdown for Shauna. The OT started talking about how they have a pool for therapies that we could use, "Oh, but I know that must be hard at this point because that's what got him here. How long has it been?" I just lost it. Right in front of her and the social worker. I felt so lost and helpless and I didn't even have Manny and Gabe to come visit me to make me feel better. All of the sudden I was very alone.
There are a lot of sick kids here. Some are really severe and some are never going home. Some don't have families to go home to. I don't feel attached to this place like the PICU. I just want Christian home. But I am excited about the therapies he'll receive. And we're blessed that he will be coming home.
Oh yeah, more on the sucking thing. Well, Christian got some Tylenol after his agitation and he took a really long, much needed nap. When he woke up he was back to normal. So I started talking to him and putting the pacifier on his lips, in his mouth, around his mouth. He actually kind of responded and he was into it a little. I put the pacifier at the front of his mouth in front of his teeth and he began with the sucking motions. Then he voluntarily began to open his mouth for me to put his pacifier in. I could really tell he was liking the stimulation, he just can't quite figure all of it out yet. He had a pacifier from about 2 months to about 6 months. Then he spit it out and wouldn't take it again. I think he likes the pacifier, though, so I'm going to keep at it.
So here's to hoping for a better, less emotional, day tomorrow. Hopefully, Manny and Gabe can come visit.
Really, this day is a gift. I told Manny right after the accident that I didn't want to go home without Christian. So it's a gift that I got today. Although Christian left in an ambulance and me in my truck, we left the hospital completely in tact and ready for the journey ahead.
Internet Aunties
I have a team of angels working on behalf of my family and for Christian. They have prayed, they have sent us cards, they have lifted us up with their inspirational words, and they are now like an extended family.
I have to write a separate blog about these angels because they've made such a difference in our lives. Now there are many angels who've included family and friends, people I haven't seen for years have dropped by to see Christian and the overwhelming support has touched us.
But these angels are different. They're my August Mamas. I've tried to explain this group to those who have asked where this particular outpouring of support is coming from. When I try to explain, people mostly look a little puzzled but accept my explanation without much question..."a group on the internet did all this?" is what I know they're thinking.
I felt compelled to write about these angels on our last day in the PICU because since we first arrived, they've been such a strength to my son and my family. And they continue to amaze us with their generosity, comfort, and prayer. As far as we are considered, they are family. They are Christian's "Internet Aunties."
Eliisa, one of the group members, did such a wonderful job putting our group and it's definition into words. So it is with her permission to post her blog entry that I'm explaining this group through her beautiful words.
Wednesday, July 8th, 2009 is a day that the Quintero family won’t ever forget. That afternoon, 11-month-old Christian fell in the family pool and nearly drowned. His big brother Gabe pulled him out of the pool, and his mother Shauna frantically did CPR while waiting for paramedics to arrive. Even at the hospital, they could not get a pulse, and Shauna was asked to come in and say goodbye to her little boy. During their last attempt to save Christian, Shauna touched her son’s leg, called out his name, and his heart started beating again! Amazing! Of course, this was not the end of the story, but rather the beginning of a long, hard struggle for Christian and his family as he fights every day to survive and recover.
But they are not alone. The Quinteros don’t just have their wonderfully supportive family and friends surrounding them. In this spectacularly small world where any person is just a mouse click or keystroke away from another, the Quinteros also have hundreds of people all over the world praying for them and for little Christian. But how is this possible? How has Christian’s story reached so many in such a short time? Maybe I should start at the beginning.
In November/December of 2007, a group of about 100 women were meeting each other on an online message board. We had all just found out we were pregnant with babies due in August 2008. There were women who were expecting their first child, and those expecting their fourth. Women who had been trying for years to get pregnant, some who had gone through countless infertility treatments, and some who had gotten pregnant easily or even by “accident.” There were women who had lost previous pregnancies, even had to deal with stillbirth. We came from all over the US, Europe, and even Australia. We were as varied in personality and circumstance as any group could be, but we were united in our love of our August babies.
As the months went on, we grew closer. We were devastated when our numbers were diminished as some among us had miscarriages and lost their precious babies. We were thrilled when announcements of twins came, and when other women found us and joined in. We shared our joys, our fears, our aches, our pains, and our complaints about spouses who just “didn’t get it.” We became a family. As time went on, we posted pictures of our growing bellies, shared gender ultrasound results, and discussed baby names.
And then, all of a sudden, it seemed, it was June, and babies started arriving. Paige was first, born so early, and we all furiously prayed for her as she fought in the NICU, and celebrated when she went home. July and August brought a cascade of babies, birth stories, and pictures of beautiful, wrinkly newborns. Some babies even waited until September to make their appearances. But we were all still the “August Moms.” By that point, we’d been together 8-9 months.
Many so-called “due date groups” peter out after babies are born. Moms get busy, don’t have time to get online anymore, or just aren’t interested now that their due dates have come and gone. Not so for our group. If anything, we became stronger after our babies were born. Instead of Braxton hicks contractions and swollen ankles, though, we complained about sleepless nights and cranky, teething babies. Instead of feeling kicks or seeing sonograms, we cheered about rolling over, sleeping through the night, and first teeth. We shared pictures, stories, and even videos of our little ones, and became even closer. We started calling each other our children’s “Internet Aunties.”
Many of us became “friends” on Facebook, and continued connecting. We had “meet-ups,” where members met each other in person. Some continue to get together regularly. And we kept posting on our message boards daily, asking questions, sharing advice, and generally doing what friends do. We had found caring, loving, loyal, and true friends on the internet. I guess stranger things have happened.
Then, as we were busy reading through posts and updates about first steps, plans for birthday parties, and other fun things, tragedy struck. One of our precious August babies, little M, died suddenly in her crib during a nap. She was just over nine months old. We were horror-stricken. We all felt so deeply for M’s mommy, and hugged our children all the tighter as those awful “what ifs” ran through our minds. But the group banded together through our grief, and rallied around M’s family. We sent cards, remembrance gifts, and messages of love and support. While little M is gone, she will always be an August baby, and her mother will always belong in our group. We love and miss them so much.
Things were just starting to get back to “normal” after little M’s passing, and we saw Shauna’s update. Her beautiful boy Christian had fallen in the pool. He was in critical condition. She asked for our prayers. We didn’t know anything else. The group flurried into action. Messages were sent, updates shared, and panicked posts started about how Christian was doing. There were frantic pleas of “Not another August baby!” One of the August Moms called Shauna to check on him, and filled everyone in. We were so glad to hear that he was getting more stable all the time but dismayed that his situation was still extremely critical.
That’s when it started. People started posting updates about Christian on their Facebook pages as we got them. We posted about Christian’s situation, and how he, his big brother Gabe, his father Manny, and his mother Shauna (who is also pregnant with Christian’s little brother or sister, due next year) needed all the positive thoughts and prayers they could get. Friends of friends, acquaintances, and coworkers responded in droves. Everyone was touched and moved by Christian’s story, and the prayers and thoughts for the little fighter and his family started. And they haven’t stopped since.
Shauna started a blog called Christian’s Journey (http://christiansjourney-shaunaq.blogspot.com/) to keep everyone up to date with the latest happenings in Christian’s world. It already has over a hundred official “followers,” and surely many more unofficial ones. I get messages all the time from Facebook friends asking how Christian is, and they’ve never met him or anyone in his family. Though, I suppose it’s a fact that I’ve never met Christian or his family either. But I know him, and I know them. I am his Internet Auntie, after all.
Christian has come so far, but he still has SO far to go. He just got a g-tube (for feeding) and a trach tube (for breathing) placed, and took his first breath on his own since the accident just yesterday. He is such a fighter! His parents are not deluded, though: they know they are in this for the long haul. Christian’s recovery is going to be lengthy and difficult, not to mention expensive. While they are, of course, devastated that their family has had to endure such tragic circumstances, they are hopefully comforted, at least somewhat, by all the people pulling for Christian.
There are those that condemn message boards and social networking sites like Facebook as frivolous time-wasters, not good for anything but gossiping, spying on old boyfriends, and sharing self-important status messages about what people had for dinner. But then there’s a case like Christian’s. Through the magic of the internet, Christian’s Internet Aunties have organized a worldwide network of positive energy, all aimed at Christian and his family. We know that they feel it, and that it’s helping. Here’s to that circle growing exponentially, and to Christian’s continued progress. We love you, buddy!
The August Moms group also sends handprints and joined together, they make a hug for Christian. Here's a picture...
We hung them in the window as more and more "hugs" arrived.
And yesterday, we finally completed the circle. These hugs will follow us to Phoenix.
And, thank you, Storms' family, for the "Miracle Baby" onesies. I love them and they're just perfect to wear as my miracle baby departs from the PICU. Thank you thank you thank you! And Jenny, Cici, Pam, and Makenzie, you are included in these "internet aunties" because if it weren't for the August Moms, I wouldn't have found you ladies and your beautiful and inspiring stories.
August Mamas, I do want you to know how much you guys mean to us. Manny and I both agree that as soon as things have calmed down and we are in the position, we can't wait to pay all of your generosity and selflessness forward. You guys are AMAZING!
On to the next journey...
Wednesday, July 29, 2009
Exceeding Expectations
Today was a big day. First it was Gabe's 11th birthday. We had a little party for him in the evening while my mother in law stayed with Christian. Gabe and his friends ran around like maniacs and, of course, Manny joined in the fun racing go carts and playing laser tag. He's such a big kid.
Manny also bakes some pretty over the top cakes so this one was no different. Two years ago it was a skateboard. It's always a highlight so here are some pics.
Seriously, Manny designed and made this cake. It was chocolate with chocolate moose and strawberries in the middle. He also used Reese's Peanut Butter Cups for the buttons. It was delicious and I am exhausted.
It was also Christian's last day as a PICU patient and I'm writing my last blog on my last night in the PICU. It's become home but I'm excited for our next endeavor.
Christian did some fun things today. He's been yawning more so that's always cute. I even got some video of it. I also talked to the nurse practitioner who's kind of like the head nurse but not really. She doesn't have any one patient, she just oversees all of them but not the nurses. Make sense? Well, she's been here since the first day we arrived. Today she actually said, "...well, we'll have to see because Christian keeps exceeding expectations...." What?!?! I knew this, of course, as his mother, but to here a professional say this made my day.
I also talked to her about reflexive movements and I told her that I swear he's trying to suck on his hand. At first I thought maybe it was a coincidence - his reflexive arm movements meeting his head coming down. This coincidence has happened more than once but today Christian was out to prove us wrong. He wanted that fist! I told the nurse about this to see what she would say. She said, "It's not really a reflexive movement. Was he actually sucking his hand?" At the time I answered no because he wasn't. But then later in the day he was able to get his fist in between his lips and he made sucking motions. He wasn't sucking his hand but he seemed to be putting two and two together. I almost ran out of the room to hunt down the nurse because she had decided it was probably coincidence that his hand was coming up while his head was coming down. I grabbed my camera and started clicking and recording. I was going to get this recorded so I know I wasn't crazy.
I wanted to post the recording, but it was taking forever and I don't have the patience tonight. Maybe I'll figure it out later.
But I can provide pictures because I'm a paparazzi mama.
"I think I can...I think I can..."
For nothing is impossible with God. - Luke 1:37
Tuesday, July 28, 2009
Mom and Gabe Day
What happened to this day? It went by so quickly. I stayed with Gabe last night and Manny stayed with Christian. We woke up early this morning and went back to school shopping with our class supply list in tow. I can tell you that I miss the days where I would get whatever I wanted Gabe to wear, bring it home, and dress him. No complaints. Now, he needs to be involved. Talk about a headache. But we had a nice time together, got some goodies and new shoes for Gabe, and finished the shopping excursion out with take out from Applebees, courtesy of one of my August mamas! It was nice because Gabe and I have always had Mom and Gabe Days/Nights where we have a "date." This is either renting a movie and eating junk food, camped out in living room or going to eat or whatever we feel like doing together.
Manny got some time alone with Christian. He did some range of motion with him, he was able to be there when they did Christian's first trach change, and help take care of Christian. Manny loved it and felt so blessed to be able to take care of Christian and that Christian was here to be taken care of.
Christian had a good day, I'm pleased to say. He did throw up two of his feedings because they're trying to increase the volume. Increasing the volume and spacing it out further (for example, they give him 105 ml every three hours) helps him learn to eat as if he were taking a bottle every couple of hours. He's not really liking this plan so we're tinkering around with what is going to work for him.
The doctors also increased Christian's dose of baclofen. This drug helps loosen his muscles so they aren't so tight. I'm glad they did this because his movement was so fluid today. He was opening his chest and he was able to open his fists. He seemed a lot more comfortable.
I held Christian for two hours straight today. I didn't want to put him back! He was so comfortable and relaxed I just couldn't let him go. But I swear the kid wants to nurse! I know, I know, it's very reflexive, maybe in my head, blah blah blah...
I was wearing a tank top so I put his cheek on my chest so we were skin to skin. He kept turning his head and burying his face in my chest and he was making sucking motions. Not huge sucking motions, just intermittently. Of course, it doesn't make sense to him but something inside of him knows that nursing was probably his favorite thing ever. And he's just going for some more! He just doesn't know how to make sense of it. And that's another new thing he's doing...little sucking motions. Nobody else has seen this except for me, by the way. Figures.
While holding Christian, he just kept staring at me. The nurse even remarked how he was staring at me and he knew he was with his mama. I can't wait until we're home so I can hold him all day long.
Something else Christian is doing is yawning, or what looks like a yawn. At first I thought he was going to throw up but the nurse was actually there to witness and she said, "That looks like a yawn!" But his eyes watered just as if he'd yawned and he took a deep breath. Baby steps.
Off to another crazy day tomorrow. Gabe is turning 11! Happy birthday, baby!
Manny got some time alone with Christian. He did some range of motion with him, he was able to be there when they did Christian's first trach change, and help take care of Christian. Manny loved it and felt so blessed to be able to take care of Christian and that Christian was here to be taken care of.
Christian had a good day, I'm pleased to say. He did throw up two of his feedings because they're trying to increase the volume. Increasing the volume and spacing it out further (for example, they give him 105 ml every three hours) helps him learn to eat as if he were taking a bottle every couple of hours. He's not really liking this plan so we're tinkering around with what is going to work for him.
The doctors also increased Christian's dose of baclofen. This drug helps loosen his muscles so they aren't so tight. I'm glad they did this because his movement was so fluid today. He was opening his chest and he was able to open his fists. He seemed a lot more comfortable.
I held Christian for two hours straight today. I didn't want to put him back! He was so comfortable and relaxed I just couldn't let him go. But I swear the kid wants to nurse! I know, I know, it's very reflexive, maybe in my head, blah blah blah...
I was wearing a tank top so I put his cheek on my chest so we were skin to skin. He kept turning his head and burying his face in my chest and he was making sucking motions. Not huge sucking motions, just intermittently. Of course, it doesn't make sense to him but something inside of him knows that nursing was probably his favorite thing ever. And he's just going for some more! He just doesn't know how to make sense of it. And that's another new thing he's doing...little sucking motions. Nobody else has seen this except for me, by the way. Figures.
While holding Christian, he just kept staring at me. The nurse even remarked how he was staring at me and he knew he was with his mama. I can't wait until we're home so I can hold him all day long.
Something else Christian is doing is yawning, or what looks like a yawn. At first I thought he was going to throw up but the nurse was actually there to witness and she said, "That looks like a yawn!" But his eyes watered just as if he'd yawned and he took a deep breath. Baby steps.
Off to another crazy day tomorrow. Gabe is turning 11! Happy birthday, baby!
Monday, July 27, 2009
Dear Neurologist
Good news! We are going to Phoenix Thursday. This is so much better than Wednesday because Gabe's birthday is Wednesday and I have the big ultrasound on Thursday morning at the very hospital that I basically live in right now, 2 floors up. Now that the transport is Thursday, we can wait until after my appointment and then go up. Then Manny and Gabe will come up Saturday and we can celebrate Christian's 1st birthday!
It will be bittersweet, I won't lie. We were going to have a huge blowout in true Shauna&Manny fashion. I couldn't wait to get him a cute birthday outfit and let him dive into his cake. These thoughts make me sad and unexpectedly emotional. It tends to creep on me like that.
But we have bigger things to celebrate...he's alive! And we HAVE a 1st birthday to celebrate. For that I'm grateful and it's an even bigger celebration for us. It will be a little less boisterous and it will be just us but that's all he needs for now. We'll have plenty of time for big celebrations.
Christian had a few issues today. He seemed a little more tired and his muscles were more stiff. He threw up a couple times, once in the morning and once in the evening. We're doing some gradual adjustments to his feedings so sometimes he doesn't tolerate it well. But there's no pattern. He mostly tolerates the feedings and then out of blue he won't. I felt so helpless because when he threw up in the evening his eyes got red and two tears fell down his cheeks. I wish it wasn't like this for him. So I don't know if he was having an off day. Maybe he'd rather just ditch that pediatric formula and have some cookies.
And then the neurologists came. I don't know if you can tell how I feel about them but I really wish they'd stay away sometimes. In fact, if I didn't have to see or speak to them, I'd be fine with that. I'd rather rely on my faith than the worst case scenario they spout as doctrine. So to deal with this I've written a letter to put things in perspective...
Dear Neurologist/Neurologist Resident,
I'd like to thank you. I'd like to thank you for doubting my son because he has proven you wrong from the time he arrived at UMC. I'd also like to thank you for speaking to me about "considering his quality of life if...say...his heart should fail...would we want to revive him?"
From that moment on I knew where you were coming from. You are coming from a place of worst case scenario. You are coming from a textbook, a case study, maybe a patient you've witnessed. I am coming from a place of faith and hope and I know that's foreign to you, but it's gotten us further than your "considerations" for my son's quality of life.
You've poked and prodded and looked doubtingly at my son. Thank you for that because I challenge your doubts with belief. And it looks like Christian's up for the challenge. You've found things you think he's not doing and then something in his little brain wakes up and he meets your challenge. But you're not satisfied, you won't admit progress, you want to challenge him again. "Well, we like to see this and he's not doing this..." Thank you for that because with your disbelief, my belief is strengthened. This has taught me patience because I've seen you do your assessments with a straight face and no emotion as if you are working on a cadaver. And, you know, with time Christian will prove you wrong. He will do all of the things you "usually look for." I have NO doubt.
And thank you for chalking up all of his movements to primitive reflexes and finding a way to link these primitive reflexes to why his brain isn't working. Because now I know that any purposeful movements, which I have had the joy of witnessing, are mine to treasure, not yours. His little brain has so far to go and I don't much tolerate people who don't believe in my son's ability to recover. So thank you for showing yourself because now I know how to weed you out. Oh yeah, and thanks for coming to "check" on Christian while selling your practice for follow ups. Now I know exactly where I won't be taking my son.
Thank you for NEVER acknowledging his progress. Thank you for trying to get him to respond and "perform" for you right before his nap when he is visibly trying to go to sleep. And, of course, thank you for always coming to check on him when he's sleepy, asleep, or generally just tired of you. All of the above is why I don't put much stock in what you have to say.
Don't get me wrong, I know you've put in your time at your respective facilities of higher education but we are working on two different systems - you have faith in medicine and I have faith in God. And, don't get me wrong again, but when you come visit, yes, your words stick with me all day. But this just makes my faith and belief stronger. And it makes every one of his victories that much bigger and that much sweeter!
You've challenged my faith, and it's just grown stronger because every time you put limits on him, Christian rises to the occasion and shows you he's still fighting.
You've challenged my belief by assuming he wouldn't make it and he's MAKING IT! My belief is stronger than ever.
You show me your book of medicine and I'll show you the miracle of Christian. Something written by man versus the miracle given to us by God.
Thank you for giving us the bottom because we have no where to go but up. And that's exactly where we intend to go!
Sincerely and with great faith,
Christian's Mama
It will be bittersweet, I won't lie. We were going to have a huge blowout in true Shauna&Manny fashion. I couldn't wait to get him a cute birthday outfit and let him dive into his cake. These thoughts make me sad and unexpectedly emotional. It tends to creep on me like that.
But we have bigger things to celebrate...he's alive! And we HAVE a 1st birthday to celebrate. For that I'm grateful and it's an even bigger celebration for us. It will be a little less boisterous and it will be just us but that's all he needs for now. We'll have plenty of time for big celebrations.
Christian had a few issues today. He seemed a little more tired and his muscles were more stiff. He threw up a couple times, once in the morning and once in the evening. We're doing some gradual adjustments to his feedings so sometimes he doesn't tolerate it well. But there's no pattern. He mostly tolerates the feedings and then out of blue he won't. I felt so helpless because when he threw up in the evening his eyes got red and two tears fell down his cheeks. I wish it wasn't like this for him. So I don't know if he was having an off day. Maybe he'd rather just ditch that pediatric formula and have some cookies.
And then the neurologists came. I don't know if you can tell how I feel about them but I really wish they'd stay away sometimes. In fact, if I didn't have to see or speak to them, I'd be fine with that. I'd rather rely on my faith than the worst case scenario they spout as doctrine. So to deal with this I've written a letter to put things in perspective...
Dear Neurologist/Neurologist Resident,
I'd like to thank you. I'd like to thank you for doubting my son because he has proven you wrong from the time he arrived at UMC. I'd also like to thank you for speaking to me about "considering his quality of life if...say...his heart should fail...would we want to revive him?"
From that moment on I knew where you were coming from. You are coming from a place of worst case scenario. You are coming from a textbook, a case study, maybe a patient you've witnessed. I am coming from a place of faith and hope and I know that's foreign to you, but it's gotten us further than your "considerations" for my son's quality of life.
You've poked and prodded and looked doubtingly at my son. Thank you for that because I challenge your doubts with belief. And it looks like Christian's up for the challenge. You've found things you think he's not doing and then something in his little brain wakes up and he meets your challenge. But you're not satisfied, you won't admit progress, you want to challenge him again. "Well, we like to see this and he's not doing this..." Thank you for that because with your disbelief, my belief is strengthened. This has taught me patience because I've seen you do your assessments with a straight face and no emotion as if you are working on a cadaver. And, you know, with time Christian will prove you wrong. He will do all of the things you "usually look for." I have NO doubt.
And thank you for chalking up all of his movements to primitive reflexes and finding a way to link these primitive reflexes to why his brain isn't working. Because now I know that any purposeful movements, which I have had the joy of witnessing, are mine to treasure, not yours. His little brain has so far to go and I don't much tolerate people who don't believe in my son's ability to recover. So thank you for showing yourself because now I know how to weed you out. Oh yeah, and thanks for coming to "check" on Christian while selling your practice for follow ups. Now I know exactly where I won't be taking my son.
Thank you for NEVER acknowledging his progress. Thank you for trying to get him to respond and "perform" for you right before his nap when he is visibly trying to go to sleep. And, of course, thank you for always coming to check on him when he's sleepy, asleep, or generally just tired of you. All of the above is why I don't put much stock in what you have to say.
Don't get me wrong, I know you've put in your time at your respective facilities of higher education but we are working on two different systems - you have faith in medicine and I have faith in God. And, don't get me wrong again, but when you come visit, yes, your words stick with me all day. But this just makes my faith and belief stronger. And it makes every one of his victories that much bigger and that much sweeter!
You've challenged my faith, and it's just grown stronger because every time you put limits on him, Christian rises to the occasion and shows you he's still fighting.
You've challenged my belief by assuming he wouldn't make it and he's MAKING IT! My belief is stronger than ever.
You show me your book of medicine and I'll show you the miracle of Christian. Something written by man versus the miracle given to us by God.
Thank you for giving us the bottom because we have no where to go but up. And that's exactly where we intend to go!
Sincerely and with great faith,
Christian's Mama
Sunday, July 26, 2009
Blackbird
It was like a calm before the storm today. The calm being Sunday in the hospital = slow and quiet. The storm being the coming week! We have back to school shopping, Gabe's birthday, the ultrasound appointment, and moving to Phoenix for a month! I'm already exhausted. Then the finale...Christian's 1st birthday is August 1st! I'm so happy he is here to celebrate it. Even if he can't have cake, I don't care. I'm so glad he's here.
Christian is still making strides and thank you to everyone who is following his journey and sending thoughts and prayers.
Christian makes little baby steps every day. Today I saw him move his mouth, which he rarely does and when he does, he only moves a little tiny bit. But he opened it a few times. He also made some sucking motions. I noticed the skin between his chin and his throat was moving up and down. I looked in his mouth and his tongue was at the roof of his mouth. He would only do it for a couple seconds at a time but he was doing it! I don't even call the doctors or nurses over when he practices new tricks because 1) they'll brush it off as something else or 2) Christian won't perform for them and then I'm the crazy mother who is seeing things. So I'm only mentioning these little victories. He'll perform for them when he's good and ready.
We had more Mommy and Christian time. I can pretty much pick him up and hold him any time I want at this point and it's great! He's stiff at first but then he loosens up and relaxes his joints. And he almost always falls asleep. He just stares up at me. Sometimes I feel like Christian is far deep inside himself and confused wondering what is going on. I hope he's not scared. When I kiss him on his cheek on his right side, sometimes he'll turn toward my lips - I'm pretty sure this is his rooting reflex. There are also orders for him not to be messed with at night so he can get a good sleep cycle down. It's not imperative that he sleep through the night. He didn't before we got here so I'm used to being up a couple times a night. But I want him to get rest and I can't stand when the nurses and respiratory therapists wake him up. He needs his beauty sleep!
I'm really just starting to realize the magnitude of the miracle that Christian is. Manny went to church today and saw the EEG tech that ran Christian's EEG the first night he arrived. The tech approached Manny and said that he had prayed for Christian that night. The EEG showed almost no brain activity. This is brain death. He told Manny he was unable to tell him that at the time and he had tested a little boy just a week prior with a similar EEG who didn't make it. Manny said the guy was almost in tears and was so happy to hear that Christian was doing well. Just on a side note...Christian's EEG was almost flat lined the night he came. They ran another one on him the next morning from a different tech who knew nothing of the one from the night before. That EEG showed brain waves and brain activity not even 12 hours later! I told that tech about the EEG the night before and said, "I thought I heard it was mostly flat."
The tech said, "Nah! See there's activity right here. They must have been mistaken."
Miracle.
I'm just trying to wrap my brain around this. Christian was literally gone and he came back to us! So it is with gratefulness and awe that I stand by what I said the night he got here... I don't care how God gives him back to us, as long as He gives him back. Everyday after He gave him back to us has been a miracle and more than I asked. It will be a long road but we'll get there with each other and sometimes just on faith alone.
I keep singing Christian a song. Now I'm no singer by any stretch but I sing little lullabies and nursery rhyme like any other Mama. But there is a song that is constantly in my head and it's Blackbird by the Beatles. Now I've done some research on the song and I know it's about the Civil Rights Movement but the lyrics in it are so meant for Christian right now and I can't stop thinking about it every time I get near him. It may sound dark but I feel like Christian is stuck way down, inside himself and he's trying to fight out of the darkness back into the light. Sorry to get all "Topics in Lyric Analysis: 101."
Christian is still making strides and thank you to everyone who is following his journey and sending thoughts and prayers.
Christian makes little baby steps every day. Today I saw him move his mouth, which he rarely does and when he does, he only moves a little tiny bit. But he opened it a few times. He also made some sucking motions. I noticed the skin between his chin and his throat was moving up and down. I looked in his mouth and his tongue was at the roof of his mouth. He would only do it for a couple seconds at a time but he was doing it! I don't even call the doctors or nurses over when he practices new tricks because 1) they'll brush it off as something else or 2) Christian won't perform for them and then I'm the crazy mother who is seeing things. So I'm only mentioning these little victories. He'll perform for them when he's good and ready.
We had more Mommy and Christian time. I can pretty much pick him up and hold him any time I want at this point and it's great! He's stiff at first but then he loosens up and relaxes his joints. And he almost always falls asleep. He just stares up at me. Sometimes I feel like Christian is far deep inside himself and confused wondering what is going on. I hope he's not scared. When I kiss him on his cheek on his right side, sometimes he'll turn toward my lips - I'm pretty sure this is his rooting reflex. There are also orders for him not to be messed with at night so he can get a good sleep cycle down. It's not imperative that he sleep through the night. He didn't before we got here so I'm used to being up a couple times a night. But I want him to get rest and I can't stand when the nurses and respiratory therapists wake him up. He needs his beauty sleep!
I'm really just starting to realize the magnitude of the miracle that Christian is. Manny went to church today and saw the EEG tech that ran Christian's EEG the first night he arrived. The tech approached Manny and said that he had prayed for Christian that night. The EEG showed almost no brain activity. This is brain death. He told Manny he was unable to tell him that at the time and he had tested a little boy just a week prior with a similar EEG who didn't make it. Manny said the guy was almost in tears and was so happy to hear that Christian was doing well. Just on a side note...Christian's EEG was almost flat lined the night he came. They ran another one on him the next morning from a different tech who knew nothing of the one from the night before. That EEG showed brain waves and brain activity not even 12 hours later! I told that tech about the EEG the night before and said, "I thought I heard it was mostly flat."
The tech said, "Nah! See there's activity right here. They must have been mistaken."
Miracle.
I'm just trying to wrap my brain around this. Christian was literally gone and he came back to us! So it is with gratefulness and awe that I stand by what I said the night he got here... I don't care how God gives him back to us, as long as He gives him back. Everyday after He gave him back to us has been a miracle and more than I asked. It will be a long road but we'll get there with each other and sometimes just on faith alone.
I keep singing Christian a song. Now I'm no singer by any stretch but I sing little lullabies and nursery rhyme like any other Mama. But there is a song that is constantly in my head and it's Blackbird by the Beatles. Now I've done some research on the song and I know it's about the Civil Rights Movement but the lyrics in it are so meant for Christian right now and I can't stop thinking about it every time I get near him. It may sound dark but I feel like Christian is stuck way down, inside himself and he's trying to fight out of the darkness back into the light. Sorry to get all "Topics in Lyric Analysis: 101."
Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise.
Blackbird singing in the dead of night
Take these sunken eyes and learn to see
All your life
You were only waiting for this moment to be free.
Blackbird fly
blackbird fly
Into the light of the dark black night.
Saturday, July 25, 2009
Lucky Star
Christian had a good day. As my husband puts it, he's almost completely wireless. He was really looking around today and the night nurse said she thinks she might have seen him trying to track with his eyes when she flashed the light to check his pupils. He's also turning his head from side to side more, as well.
The pulmonologist came in and checked Christian. He noticed Christian was at room air (24%) and 100% oxygen saturation. This is good!!! He said, "I'm three less than that on a good day!" I have to say I'm not surprised. I'm overjoyed, but not surprised. I just knew he wouldn't have problems with his lungs or with breathing whether he had the trach or not. I just knew his heart would be strong, too. Our battle, or should I say journey, will be neurologically. There will be no proven medicine that can be given through his feeding tube for this. We just have to get him whatever therapy he needs and wait to see what his little brain can do. I have all the faith that Christian's little brain will heal. I just feel it inside me.
The doctor called Christian a "star" today and that's a big deal to me. Every time a doctor says anything remotely positive I just picture those doctors during the first few days telling us the situation was grim, bleak, grey, bad, critical, etc. No hope in their eyes and that's all we had to go on. We basically relied and continue to lean on our faith. And it's gotten us so far along with the thoughts and prayers from everyone else around the globe.
We got some really good pictures today and I'm so proud to post them.
This a really good picture of his trach. The blue tube is for humidity only. It makes it easier to breath in this dry desert while he's getting used to his trach.
I'm so proud of my little man!
The pulmonologist came in and checked Christian. He noticed Christian was at room air (24%) and 100% oxygen saturation. This is good!!! He said, "I'm three less than that on a good day!" I have to say I'm not surprised. I'm overjoyed, but not surprised. I just knew he wouldn't have problems with his lungs or with breathing whether he had the trach or not. I just knew his heart would be strong, too. Our battle, or should I say journey, will be neurologically. There will be no proven medicine that can be given through his feeding tube for this. We just have to get him whatever therapy he needs and wait to see what his little brain can do. I have all the faith that Christian's little brain will heal. I just feel it inside me.
The doctor called Christian a "star" today and that's a big deal to me. Every time a doctor says anything remotely positive I just picture those doctors during the first few days telling us the situation was grim, bleak, grey, bad, critical, etc. No hope in their eyes and that's all we had to go on. We basically relied and continue to lean on our faith. And it's gotten us so far along with the thoughts and prayers from everyone else around the globe.
We got some really good pictures today and I'm so proud to post them.
Mommy and Christian time.
This a really good picture of his trach. The blue tube is for humidity only. It makes it easier to breath in this dry desert while he's getting used to his trach.
I'm so proud of my little man!
Friday, July 24, 2009
Hungry Hungry Hippo
I'm going to try and not be long winded (we'll see how that goes) but I couldn't go to sleep without reporting Christian's accomplishments. I have this habit of staying up really late - it's almost midnight - and getting up super early. I get up at anywhere from 6AM to 7:30AM. I'm just too excited to find out what the day is going to bring for Christian so I can never go back to sleep. Besides Christian has trained me well and would never approve of me sleeping past 7:30AM.
Christian breathed on his own for the whole day. He has help from a small mask that gives him moisture but that's it. There were no hiccups, no rough spots, he never got tired...he did great! In fact, they even removed the ventilator from the room. The darn thing just up and left. It's getting a lot more roomy in here all of the sudden. They also removed his central line which is where they drew all his blood. They didn't put an IV in either, because there is no longer a need. He also lost his temperature probe and a whole mess of machines. The only thing left are his feeding tube and sensors for his hear rate, pulse, and oxygen saturation.
But the best thing was...I got to pick him up right out of bed and hold him. Now this was better than the first time I held him because he was connected to about 150 wires, he was propped on a pillow, and it still felt physically distant. Tonight I got to pick him up, lay him in my lap, and cradle him. I didn't cry last time but I did this time. I felt like I was holding a newborn baby for the first time. When I first picked him up and sat down he was stiff but then he settled right in and fell asleep twice. The first time he woke up because I was sniffling and trying to reach for the camera. I couldn't help but get emotional. I felt the connection between us and I was just overcome because I felt like he knew he was with his mama. I was just so amazed that a connection could still exist even after so much trauma and injury and hurt that he's been through. Love still prevails and it's awe-inspiring.
I also noticed something else, and I'm sure the doctors will second guess me all over the place. I even second guessed myself and thought maybe I was seeing things. Well, Christian tends to turn his head to the right like he favors that side (it used to be the left). I happened to be holding him with my left arm so if he turned to his right, he'd turn his face toward me. I started stroking his cheek and noticed he was tensing up his neck muscles and trying to move toward my finger. I made a knuckle with my finger, which is something we used to do to subside him when he was in the car and very little. It was like a makeshift pacifier. Well I made a knuckle and he kept turning his face toward it as I rubbed it on his cheek - like a rooting reflex in newborns. Then he was able to turn his face so that his little mouth rested over my knuckle - like he wanted to nurse!!! Now I don't know if rooting reflex resurfaces or if he just remembers nursing, smells me, and was trying to piece it all together. But I did this several times, so I'm sure I wasn't mistaken. I even called the nurse in to ask her about it and witness what he was doing, but, of course, Christian was all wiped out by then and was only just turning his head by that time. Now if anyone knows Christian, you know that he was addicted to nursing. He came out of the womb ready to eat, latched on, and didn't stop until the accident. So while I'm excited that something could possibly be awakening in his brain, I'm not surprised by my little hungry hippo.
I'm a little nervous about Phoenix and how that's just a few days away but I'm also excited because Christian will get rehab services and all kinds of good things to get him going. It will be so great for him so I'm glad it's required.
One more thing...I'm so amazed by the kindness of the human spirit. You go around thinking nobody cares about anything but themselves, in fact, I'm guilty of being completely self involved. But then something like this happens and God shows you who people really are. God shows you who you really are. I have received many message about how people are inspired by Christian's fight and my strength in this journey to recovery. But it is all of you who inspire me. I know I can be optimistic and charge through another day because I have all of your thoughts and prayers lifting us up. It has changed my life.
Sorry about the whole promise to try and not be long winded thing. That never works out for me.
Christian breathed on his own for the whole day. He has help from a small mask that gives him moisture but that's it. There were no hiccups, no rough spots, he never got tired...he did great! In fact, they even removed the ventilator from the room. The darn thing just up and left. It's getting a lot more roomy in here all of the sudden. They also removed his central line which is where they drew all his blood. They didn't put an IV in either, because there is no longer a need. He also lost his temperature probe and a whole mess of machines. The only thing left are his feeding tube and sensors for his hear rate, pulse, and oxygen saturation.
But the best thing was...I got to pick him up right out of bed and hold him. Now this was better than the first time I held him because he was connected to about 150 wires, he was propped on a pillow, and it still felt physically distant. Tonight I got to pick him up, lay him in my lap, and cradle him. I didn't cry last time but I did this time. I felt like I was holding a newborn baby for the first time. When I first picked him up and sat down he was stiff but then he settled right in and fell asleep twice. The first time he woke up because I was sniffling and trying to reach for the camera. I couldn't help but get emotional. I felt the connection between us and I was just overcome because I felt like he knew he was with his mama. I was just so amazed that a connection could still exist even after so much trauma and injury and hurt that he's been through. Love still prevails and it's awe-inspiring.
I also noticed something else, and I'm sure the doctors will second guess me all over the place. I even second guessed myself and thought maybe I was seeing things. Well, Christian tends to turn his head to the right like he favors that side (it used to be the left). I happened to be holding him with my left arm so if he turned to his right, he'd turn his face toward me. I started stroking his cheek and noticed he was tensing up his neck muscles and trying to move toward my finger. I made a knuckle with my finger, which is something we used to do to subside him when he was in the car and very little. It was like a makeshift pacifier. Well I made a knuckle and he kept turning his face toward it as I rubbed it on his cheek - like a rooting reflex in newborns. Then he was able to turn his face so that his little mouth rested over my knuckle - like he wanted to nurse!!! Now I don't know if rooting reflex resurfaces or if he just remembers nursing, smells me, and was trying to piece it all together. But I did this several times, so I'm sure I wasn't mistaken. I even called the nurse in to ask her about it and witness what he was doing, but, of course, Christian was all wiped out by then and was only just turning his head by that time. Now if anyone knows Christian, you know that he was addicted to nursing. He came out of the womb ready to eat, latched on, and didn't stop until the accident. So while I'm excited that something could possibly be awakening in his brain, I'm not surprised by my little hungry hippo.
I'm a little nervous about Phoenix and how that's just a few days away but I'm also excited because Christian will get rehab services and all kinds of good things to get him going. It will be so great for him so I'm glad it's required.
One more thing...I'm so amazed by the kindness of the human spirit. You go around thinking nobody cares about anything but themselves, in fact, I'm guilty of being completely self involved. But then something like this happens and God shows you who people really are. God shows you who you really are. I have received many message about how people are inspired by Christian's fight and my strength in this journey to recovery. But it is all of you who inspire me. I know I can be optimistic and charge through another day because I have all of your thoughts and prayers lifting us up. It has changed my life.
Sorry about the whole promise to try and not be long winded thing. That never works out for me.
Small Victories
So who wants to visit us in Phoenix?
We could be going as early as Wednesday. Although Manny made mini chimichangas for the entire PICU staff today so they said they're thinking of reasons to keep us here a little longer. :)
With Christian off the vent, there's nothing to hold Christian in the PICU. He'll get his trach changed on Tuesday and be discharged by Wednesday. Then off to Phoenix!
Furthermore, there is another little celebration. When doctors are testing for neurological response, one of the many things they test are the eyes. They check for pupil dilation, doll eye reflex (where the eyes move from side to side when the head is turned, I think) and the corneal reflex. Well he had pupil dilation and doll eye reflexes but no corneal reflex. This reflex is connected to the spinal cord and occurs when the rim of your cornea is touched and you flinch because it's painful. No reflex could be connected to death of spinal cord activity.
Anyway, Christian didn't have it in the first few days after arriving. I asked the resident if she could test it again about five days ago and no luck. They told me how to test it myself so I did last night and he flinched and blinked away!!! This morning I could hardly wait to tell the resident to test him. She said she didn't need to because she already knows he has it and she didn't want to hurt him. She said he shows basic brain function. YES!!!!
Let me tell you why this makes me so happy...for the first week he was here there were doctors standing over him with glum looks stating worse case scenario. These doctors and neurologists said he had abnormal brain activity, he didn't have this, he didn't have that, he may never do this, he may never to that. That a doctor is acknowledging that it's obvious that he has "basic brain function" is like a catapult for us. I know it's small but even small victories mean so much. I'll take it!
And with less and less tying him to machines, I will soon be able to pick him up any time I want to. I can't wait!
Phoenix...here we come!
We could be going as early as Wednesday. Although Manny made mini chimichangas for the entire PICU staff today so they said they're thinking of reasons to keep us here a little longer. :)
With Christian off the vent, there's nothing to hold Christian in the PICU. He'll get his trach changed on Tuesday and be discharged by Wednesday. Then off to Phoenix!
Furthermore, there is another little celebration. When doctors are testing for neurological response, one of the many things they test are the eyes. They check for pupil dilation, doll eye reflex (where the eyes move from side to side when the head is turned, I think) and the corneal reflex. Well he had pupil dilation and doll eye reflexes but no corneal reflex. This reflex is connected to the spinal cord and occurs when the rim of your cornea is touched and you flinch because it's painful. No reflex could be connected to death of spinal cord activity.
Anyway, Christian didn't have it in the first few days after arriving. I asked the resident if she could test it again about five days ago and no luck. They told me how to test it myself so I did last night and he flinched and blinked away!!! This morning I could hardly wait to tell the resident to test him. She said she didn't need to because she already knows he has it and she didn't want to hurt him. She said he shows basic brain function. YES!!!!
Let me tell you why this makes me so happy...for the first week he was here there were doctors standing over him with glum looks stating worse case scenario. These doctors and neurologists said he had abnormal brain activity, he didn't have this, he didn't have that, he may never do this, he may never to that. That a doctor is acknowledging that it's obvious that he has "basic brain function" is like a catapult for us. I know it's small but even small victories mean so much. I'll take it!
And with less and less tying him to machines, I will soon be able to pick him up any time I want to. I can't wait!
Phoenix...here we come!
Thursday, July 23, 2009
24 Pound Newborn
Another day goes by when I'm ecstatically happy about Christian's progress, the fact that he's here, and that many people who have shown support for my Christian. I'm just floored by it.
Christian made great strides today and breathed on his own for 9 hours (and still counting). He will be put back on the vent for the night just to give him a rest since he worked so hard! I think he needs a rest, too, but I overheard the doctor saying, "Hopefully, this will be the last time on the vent." HOPEFULLY!!! I'm so excited about this. We've even started talking about his discharge and transfer to the transition facility in Phoenix. He won't go down to the regular Peds floor, which surprised me. He'll go straight to Phoenix and this will occur in the next 2 weeks, I believe. Wow! I'm excited about this because I can get a referral to the Ronald McDonald House and stay there with Christian or my husband has relatives there. But I'm even more excited because Christian will get additional rehabilitation services AND I'll be able to visit the HBOT center of AZ and maybe, possibly get him some treatments after discharge while we're up there. It will be quite the adventure. Of course, I'll need to come back to Tucson every now and then and make sure Manny and Gabe come visit me because they need Mama, too.
Accomplishments of the day...of course, the breathing. Christian's eyes have also been shifting more, trying to focus, and moving around with control. I also swear that I saw his mouth start to move a little. But he looks beautiful...just like my Christian. If you want to know what Christian is like right now he's like a 24 pound newborn. He moves like a newborn, eats like a newborn, and sleeps like a newborn. I love my giant newborn.
I also started a foundation account for donations made to go to Christian's care. It's called The Christian Quintero Foundation. Now all donations will go right into his account. I'm so proud because it will help him in his recovery and I can't wait! I also love when I get stuff done and don't procrastinate. This is just too important.
We had our first trach care classes and we learned about trach suctioning. We actually have to do this in order to "pass" our trach class so Manny and I both got to suction Christian's trach. Talk about nerve wracking! It isn't the procedure, it's the keeping everything completely sterile. This won't be an issue at home as much as it is in the hospital because of all of the constant germs he's exposed to here.
And without further ado...Christian's Chucks, as promised.
Christian made great strides today and breathed on his own for 9 hours (and still counting). He will be put back on the vent for the night just to give him a rest since he worked so hard! I think he needs a rest, too, but I overheard the doctor saying, "Hopefully, this will be the last time on the vent." HOPEFULLY!!! I'm so excited about this. We've even started talking about his discharge and transfer to the transition facility in Phoenix. He won't go down to the regular Peds floor, which surprised me. He'll go straight to Phoenix and this will occur in the next 2 weeks, I believe. Wow! I'm excited about this because I can get a referral to the Ronald McDonald House and stay there with Christian or my husband has relatives there. But I'm even more excited because Christian will get additional rehabilitation services AND I'll be able to visit the HBOT center of AZ and maybe, possibly get him some treatments after discharge while we're up there. It will be quite the adventure. Of course, I'll need to come back to Tucson every now and then and make sure Manny and Gabe come visit me because they need Mama, too.
Accomplishments of the day...of course, the breathing. Christian's eyes have also been shifting more, trying to focus, and moving around with control. I also swear that I saw his mouth start to move a little. But he looks beautiful...just like my Christian. If you want to know what Christian is like right now he's like a 24 pound newborn. He moves like a newborn, eats like a newborn, and sleeps like a newborn. I love my giant newborn.
I also started a foundation account for donations made to go to Christian's care. It's called The Christian Quintero Foundation. Now all donations will go right into his account. I'm so proud because it will help him in his recovery and I can't wait! I also love when I get stuff done and don't procrastinate. This is just too important.
We had our first trach care classes and we learned about trach suctioning. We actually have to do this in order to "pass" our trach class so Manny and I both got to suction Christian's trach. Talk about nerve wracking! It isn't the procedure, it's the keeping everything completely sterile. This won't be an issue at home as much as it is in the hospital because of all of the constant germs he's exposed to here.
And without further ado...Christian's Chucks, as promised.
Daddy brings Christian cool, new high tops.
A little more posing fun.
Wednesday, July 22, 2009
So Glad You're Here
Christian breathed on his own for the first time! I'm so proud of him! He worked so hard and then physical therapy was right afterward. He was so tired! But he did great! More weaning of the machine tomorrow.
I really think Christian likes singing. There was a moment a couple days after the accident when he was lying in his hospital bed totally out of it. A friend of the family sent her priest over to see Christian. He started singing a hymn and it was really moving. Then he started singing something upbeat and Christian opened his eyes and stared right at him! It was amazing. I sing to him sometimes before bed. And he seems to respond to it. I don't know how I know but I just know. I think it's mommy intuition. Daddy got Christian some Converse high tops, which the Physical Therapist was really happy about. We'll post pictures of him in his cool new shoes tomorrow.
I get a lot of questions about how Gabe is doing. He is doing well. He's not really an expressive child. I don't think he understands how serious Christian's needs will be in the future. I stayed the night with him Monday night and I'm staying with him tonight. He's very sensitive so I'm sure he's feeling something but he doesn't know how to let it out. But we're trying to do "normal" things like guitar practice and pizza and movies so he feels comfortable again. Even if we don't.
I also got some inquiries asking about what it was like to spend the night at home for the first time. Terrible. I feel like the house is a dark place once filled with loud noises, yelling, things being thrown on the floor, laughing, and giggling. Now it's just quiet. I don't feel comfortable here. I can't sleep in my bed because Manny is at the hospital and Christian is there, too. I hardly slept Monday night away from the hospital but last night when I returned, I slept like a baby.
I do want to say that I feel so blessed. Manny was talking to the fireman who handles PR and media for the fire department that responded to my 911 call. This man checks up on us weekly to report any updates to the media. Manny was telling him about Christian's progress and the fireman asked if we'd been watching the news. Not so much. He said there were 5 other incidences involving drowning and near drowning in the last two weeks in Tucson alone. Not all of them survived. In fact, two babies, age 2 and 3 were victims today and didn't make it. This hit so close to home for me because we were right there thinking Christian was gone two weeks ago today. It's a miracle he's here and praise God he's with us, in whatever capacity. I love him so much and he's here fighting his way back.
When he was born I used to look at him in his baby perfection and all I could muster up was telling him, "I'm so glad you're here." Now, I tell him that everyday.
I really think Christian likes singing. There was a moment a couple days after the accident when he was lying in his hospital bed totally out of it. A friend of the family sent her priest over to see Christian. He started singing a hymn and it was really moving. Then he started singing something upbeat and Christian opened his eyes and stared right at him! It was amazing. I sing to him sometimes before bed. And he seems to respond to it. I don't know how I know but I just know. I think it's mommy intuition. Daddy got Christian some Converse high tops, which the Physical Therapist was really happy about. We'll post pictures of him in his cool new shoes tomorrow.
I get a lot of questions about how Gabe is doing. He is doing well. He's not really an expressive child. I don't think he understands how serious Christian's needs will be in the future. I stayed the night with him Monday night and I'm staying with him tonight. He's very sensitive so I'm sure he's feeling something but he doesn't know how to let it out. But we're trying to do "normal" things like guitar practice and pizza and movies so he feels comfortable again. Even if we don't.
I also got some inquiries asking about what it was like to spend the night at home for the first time. Terrible. I feel like the house is a dark place once filled with loud noises, yelling, things being thrown on the floor, laughing, and giggling. Now it's just quiet. I don't feel comfortable here. I can't sleep in my bed because Manny is at the hospital and Christian is there, too. I hardly slept Monday night away from the hospital but last night when I returned, I slept like a baby.
I do want to say that I feel so blessed. Manny was talking to the fireman who handles PR and media for the fire department that responded to my 911 call. This man checks up on us weekly to report any updates to the media. Manny was telling him about Christian's progress and the fireman asked if we'd been watching the news. Not so much. He said there were 5 other incidences involving drowning and near drowning in the last two weeks in Tucson alone. Not all of them survived. In fact, two babies, age 2 and 3 were victims today and didn't make it. This hit so close to home for me because we were right there thinking Christian was gone two weeks ago today. It's a miracle he's here and praise God he's with us, in whatever capacity. I love him so much and he's here fighting his way back.
When he was born I used to look at him in his baby perfection and all I could muster up was telling him, "I'm so glad you're here." Now, I tell him that everyday.
Progress in Pictures
As promised, here are some before and after pictures of Christian. I was looking at the pictures and his progress is amazing. So here you go!
This is Christian last Friday, July 17th with tubes, intubation, tape, washcloth on his head, and an unflattering, pinkish hospital gown. Notice his eyes are turned up.
Here is Christian on Monday, July 22nd. This was the first day his eyes were finally down all the way and eyelids were open. But we still have tape all over his face.
Christian with his "dumbbells."
Yesterday, July 21st, just after surgery. Sleepy baby.
Today, Wednesday, July 22nd. The swelling had gone down and eyes are open, trach in position.
"I'm a brand new man!"
Tuesday, July 21, 2009
Christian made it through his surgeries without a bump. He has a tracheostomy in his airway for breathing and a gtube in his stomach for eating. I was expecting him to be groggy for half the day but when he came up from surgery, his eyes were wide open and he was moving his arms and hands around like he was ready to go. It was so great to see my baby's face again. Absolutely nothing was taped to it. His mouth and tongue are swollen from the intubation tube, the taping and retaping, and his mouth never being shut for two weeks. But I love my little fishy face. When his swelling comes down, I'll post before and after pictures so you guys can see his progress.
I feel good about our decision. And the funny thing is, Christian's been coughing and showing gag signals today. So we know it's there, he just has to work on getting them strong enough to substantially clear his airways and we can remove the trach. I know he'll do it in time. He's also breathing through his nose, which is funny because he snorts a little. I really think just getting that tube out of his throat has made him so comfortable. I also think it limited him with his progress. Now that it's gone, he can move on.
An Occupational Therapist came by yesterday to teach us some range of motion exercises and those are fun because they help him stretch. There is so much we have to learn about taking care of trachs and gtubes. Gtubes are simple enough but we'll need to take 6 hours of training for the trach. That starts Thursday. Because his flexing and posturing actually point his feet, in order to encourage his foot to move back into a right angle for walking, the doctors suggested high tops. So Daddy is going out to buy Christian his first pair of Chuck's Converse high tops. Not sure this is what the doctors had in mind.
So what's next? CPAP trials start again tomorrow. We wanted to give him a break today and leave him on a low level of oxygen during his surgery recovery. But we'll start weaning him off the vent tomorrow. I have no doubt he'll be fine. He seems ready to move on to the next phase and so are we!
Thank you for all of the prayers today! They continue to lift us up and move us through.
I feel good about our decision. And the funny thing is, Christian's been coughing and showing gag signals today. So we know it's there, he just has to work on getting them strong enough to substantially clear his airways and we can remove the trach. I know he'll do it in time. He's also breathing through his nose, which is funny because he snorts a little. I really think just getting that tube out of his throat has made him so comfortable. I also think it limited him with his progress. Now that it's gone, he can move on.
An Occupational Therapist came by yesterday to teach us some range of motion exercises and those are fun because they help him stretch. There is so much we have to learn about taking care of trachs and gtubes. Gtubes are simple enough but we'll need to take 6 hours of training for the trach. That starts Thursday. Because his flexing and posturing actually point his feet, in order to encourage his foot to move back into a right angle for walking, the doctors suggested high tops. So Daddy is going out to buy Christian his first pair of Chuck's Converse high tops. Not sure this is what the doctors had in mind.
So what's next? CPAP trials start again tomorrow. We wanted to give him a break today and leave him on a low level of oxygen during his surgery recovery. But we'll start weaning him off the vent tomorrow. I have no doubt he'll be fine. He seems ready to move on to the next phase and so are we!
Thank you for all of the prayers today! They continue to lift us up and move us through.
Monday, July 20, 2009
Consensus
So today was different. I got an overload of information and found out they've given Christian a 9:30AM spot for trach and g-tube surgery tomorrow. My husband is really in support of this but I'm just still wondering if we're doing the right thing. He does cough occasionally but that's not enough to keep his air way clear. And as an infant who's still teething, he will have saliva that runs down his little throat into his lungs. The way the doctor put it - he could keep getting pneumonia after pneumonia, which could eventually kill him. Well, I guess that put things into perspective. And they just want to keep moving along, which I'm not opposed to. I just wish it was different.
The doctors and nurses are ALL in consensus. Not a one will bend on their position that a trach is the best option. A nurse came in to talk to me and I asked her what would happen if we just gave him a trial by taking out the tube and seeing how he does. She said she's 99% sure that he won't do well. She's never seen it happen without a strong and substantial cough and gag reflex. She suggested that I didn't seem sure and that we didn't have to go through with it but I told her, "There really doesn't seem to be any alternatives and nobody really wants to wait anymore." I'm struggling with this with all my heart because I wanted so badly for him not to have to get one. Add to that, getting a trach makes things a little more complicated, recovery wise. It's not the taking care of it, it's that it moves us into a different bracket of long term care needs. This is good in the long term aspect with regard to coverage, but in the immediate future and in relation to Christian's immediate recovery, the state REQUIRES him to go to a transitional long term care facility for at least 30 days in order to qualify for all of Christian's needs and long term coverage. Lovely insurance companies won't cover what he will need. Great.
And it gets better...the only transitional facility is in Phoenix. This is 2 hours away. I can't believe that with two major children's hospitals in this town they don't have one transitional facility??? And this is required by the state!!! If we take him home right from the hospital, as we planned, they won't cover anything. We're on our own. I don't understand why this has to be so difficult in an already difficult situation. The gist of this day was that I feel like all these people are making all these decisions and recommendations about Christian's care and I have no second opinions or alternatives. I feel like I'm at their mercy so I'm just praying we're doing the right thing for our son.
The surgeons explain the trach as a more temporary device, while the doctors and nurses suggest it's more long term. I'm just listening to the surgeons. He already has a cough, he just needs to strengthen it and then we can remove the trach.
So Christian is headed to surgery tomorrow for his trach and g-tube (feeding tube in his belly) at 9:30AM. Please say prayers for Christian and for us that we're doing the right thing for him.
ETA: I want to end on a positive note...two things.
1) After Christian gets his surgery there will be no yuckiness taped to his face and I'll be able to see my beautiful baby's face again.
2) I found a private neurologist who gives HBOT treatments and treated a boy with Christian's condition who came to them in a vegetative state. The boy is now running around. Awesome!
The doctors and nurses are ALL in consensus. Not a one will bend on their position that a trach is the best option. A nurse came in to talk to me and I asked her what would happen if we just gave him a trial by taking out the tube and seeing how he does. She said she's 99% sure that he won't do well. She's never seen it happen without a strong and substantial cough and gag reflex. She suggested that I didn't seem sure and that we didn't have to go through with it but I told her, "There really doesn't seem to be any alternatives and nobody really wants to wait anymore." I'm struggling with this with all my heart because I wanted so badly for him not to have to get one. Add to that, getting a trach makes things a little more complicated, recovery wise. It's not the taking care of it, it's that it moves us into a different bracket of long term care needs. This is good in the long term aspect with regard to coverage, but in the immediate future and in relation to Christian's immediate recovery, the state REQUIRES him to go to a transitional long term care facility for at least 30 days in order to qualify for all of Christian's needs and long term coverage. Lovely insurance companies won't cover what he will need. Great.
And it gets better...the only transitional facility is in Phoenix. This is 2 hours away. I can't believe that with two major children's hospitals in this town they don't have one transitional facility??? And this is required by the state!!! If we take him home right from the hospital, as we planned, they won't cover anything. We're on our own. I don't understand why this has to be so difficult in an already difficult situation. The gist of this day was that I feel like all these people are making all these decisions and recommendations about Christian's care and I have no second opinions or alternatives. I feel like I'm at their mercy so I'm just praying we're doing the right thing for our son.
The surgeons explain the trach as a more temporary device, while the doctors and nurses suggest it's more long term. I'm just listening to the surgeons. He already has a cough, he just needs to strengthen it and then we can remove the trach.
So Christian is headed to surgery tomorrow for his trach and g-tube (feeding tube in his belly) at 9:30AM. Please say prayers for Christian and for us that we're doing the right thing for him.
ETA: I want to end on a positive note...two things.
1) After Christian gets his surgery there will be no yuckiness taped to his face and I'll be able to see my beautiful baby's face again.
2) I found a private neurologist who gives HBOT treatments and treated a boy with Christian's condition who came to them in a vegetative state. The boy is now running around. Awesome!
Holding Hands
Christian has been given medicine to relax his body. So today when he was moving his arms back and forth, his little hands have been opening and closing. As he brought his hand up, he grabbed on to my hand and I grabbed on to his. I was talking to the nurse and then looked down and realized he'd fallen asleep like this. Everyone together...Awwwwww!
Sunday, July 19, 2009
AMAZING
a⋅maz⋅ing
–adjective
causing great surprise or sudden wonder.
Christian amazes me. People use the word 'amazing' like they use the word 'cool.' But I'm experiencing what 'amazing' really means. I'm finding amazement in the progress he makes everyday. He makes these little leaps and bounds and he's a fighter! Let me explain further...since Christian has come off the sedation his eyes have been rolled up. At first, you could only see the bottom rims of his eyes and then only the white part. Everyday, they've come down a little further and a little further. Today they were almost dead center. And I actually witnessed him trying to control his eyes moving from side to side. I could see him working to try and figure this whole eye-looking-seeing business out. I was amazed by Christian, I was amazed by the human body, and I was amazed by God. Every part of that was a miracle we thought we were going to loose and every part of his looking experimentation, and that I got to witness it, was a gift.
I also snuggled Christian a little today. I'm a snuggler with my kids. Gabe only lets me do it at home with nobody around and Christian was always just too busy to stay still, but I always got my kissies and huggies in. Today I put my cheek up to his and whispered in his ear how much I loved him. I put my hand on his belly and watch him move his head from side to side slowly. As I put my cheek against his again, I felt him stop and rest into me as I whispered. Now Christian's hands are always moving now but I looked down and his hand was rested over mine. Now that's amazing. Maybe it was a coincidence of reflexive movement all resting at once but I choose to believe he wanted snuggles from Mommy.
Little by little, wires and tubes are beginning to disappear. Today, Christian's arterial line was taken out, much to Christian's liking. He's been fighting that thing for days. He has bruises on his arm from resisting the tape. Again, such a little fighter. He's much happier and can now move his left hand freely. His lungs are also looking great on the x-rays so his secretions seem to be decreasing and that makes me feel better. He's adjusting to his feeds well, too. No surprise there. If there is one thing about my boy, he likes to eat and no silly brain injury will change that!
As for cough and gag, none yet. The appointment for his trach surgery is Tuesday or Wednesday, whenever they can fit him in. I got news from the surgeon today that "somehow" he ended up on the schedule for first thing Monday morning (that's tomorrow). I said I wasn't comfortable with that. I wanted to at least give him until Tuesday or Wednesday. Then I will know we gave him time. It's not permanent. The surgeon said if he gets it Tuesday and he strengthens his cough and gag reflex over night, they can take it out the next day. We'll just do whatever he needs. That's my motto. The quicker he's disconnected from machines, the quicker we can get on with his recovery. But we're waiting until Tuesday or Wednesday.
Christian is also receiving a mild muscle relaxer to help with his tone. The doctor said it would help weed out what was purposeful movement and what was posturing movement. Well, HE'S STILL MOVING!!! Even on the medication. He gets those arms going and it looks like he's ready to punch someone out. That someone is probably any negative doctor that steps foot in this hospital room.
I received a beautiful, not to mention, tasty delivery today. It was an Edible Arrangement from my August Mamas group. It had chocolate covered bananas and strawberries, and my favorite - mango! Their support has really been nothing short of AMAZING in it's truest sense. I've never felt such support and love in all my life. I feel like they're my family and I'm truly blessed to be a part of their Mommyhood. Thank you will never be enough. They've also helped to spread the word about Christian and THAT means the world to me. I get a little emotional just thinking about it...talk amongst yourselves.
Two more things...I've received donations, some from around the world, and I can't even believe the kindness and love that exists in this world. It inspires me to be a better person and there is no question these donations will help with Christian's recovery. God bless you! Furthermore, I'm a little bit of a blog virgin/idiot so if you ask me a question in the comments section, trust me, I'm sitting here dying to answer you but haven't quite figured it out yet. As soon as I do, I'll respond. I promise I'm not ignoring you so I'm going to answer you in my blogs in the meantime.
HOLY CRAP! I just took a break to talk to the hospital pastor. He asked if we could pray and, of course, I'm always down for prayers for Christian! But this time I specifically asked if we could pray for his cough and gag reflex. After our prayer he walked out and the respiratory therapist came in to do percussion (pounding on his chest to loosen up junk) and Christian COUGHED!!! You cannot make this stuff up!!! Thank you, God! When people tell you God is good, believe them. God is good.
God is amazing.
–adjective
causing great surprise or sudden wonder.
Christian amazes me. People use the word 'amazing' like they use the word 'cool.' But I'm experiencing what 'amazing' really means. I'm finding amazement in the progress he makes everyday. He makes these little leaps and bounds and he's a fighter! Let me explain further...since Christian has come off the sedation his eyes have been rolled up. At first, you could only see the bottom rims of his eyes and then only the white part. Everyday, they've come down a little further and a little further. Today they were almost dead center. And I actually witnessed him trying to control his eyes moving from side to side. I could see him working to try and figure this whole eye-looking-seeing business out. I was amazed by Christian, I was amazed by the human body, and I was amazed by God. Every part of that was a miracle we thought we were going to loose and every part of his looking experimentation, and that I got to witness it, was a gift.
I also snuggled Christian a little today. I'm a snuggler with my kids. Gabe only lets me do it at home with nobody around and Christian was always just too busy to stay still, but I always got my kissies and huggies in. Today I put my cheek up to his and whispered in his ear how much I loved him. I put my hand on his belly and watch him move his head from side to side slowly. As I put my cheek against his again, I felt him stop and rest into me as I whispered. Now Christian's hands are always moving now but I looked down and his hand was rested over mine. Now that's amazing. Maybe it was a coincidence of reflexive movement all resting at once but I choose to believe he wanted snuggles from Mommy.
Little by little, wires and tubes are beginning to disappear. Today, Christian's arterial line was taken out, much to Christian's liking. He's been fighting that thing for days. He has bruises on his arm from resisting the tape. Again, such a little fighter. He's much happier and can now move his left hand freely. His lungs are also looking great on the x-rays so his secretions seem to be decreasing and that makes me feel better. He's adjusting to his feeds well, too. No surprise there. If there is one thing about my boy, he likes to eat and no silly brain injury will change that!
As for cough and gag, none yet. The appointment for his trach surgery is Tuesday or Wednesday, whenever they can fit him in. I got news from the surgeon today that "somehow" he ended up on the schedule for first thing Monday morning (that's tomorrow). I said I wasn't comfortable with that. I wanted to at least give him until Tuesday or Wednesday. Then I will know we gave him time. It's not permanent. The surgeon said if he gets it Tuesday and he strengthens his cough and gag reflex over night, they can take it out the next day. We'll just do whatever he needs. That's my motto. The quicker he's disconnected from machines, the quicker we can get on with his recovery. But we're waiting until Tuesday or Wednesday.
Christian is also receiving a mild muscle relaxer to help with his tone. The doctor said it would help weed out what was purposeful movement and what was posturing movement. Well, HE'S STILL MOVING!!! Even on the medication. He gets those arms going and it looks like he's ready to punch someone out. That someone is probably any negative doctor that steps foot in this hospital room.
I received a beautiful, not to mention, tasty delivery today. It was an Edible Arrangement from my August Mamas group. It had chocolate covered bananas and strawberries, and my favorite - mango! Their support has really been nothing short of AMAZING in it's truest sense. I've never felt such support and love in all my life. I feel like they're my family and I'm truly blessed to be a part of their Mommyhood. Thank you will never be enough. They've also helped to spread the word about Christian and THAT means the world to me. I get a little emotional just thinking about it...talk amongst yourselves.
Two more things...I've received donations, some from around the world, and I can't even believe the kindness and love that exists in this world. It inspires me to be a better person and there is no question these donations will help with Christian's recovery. God bless you! Furthermore, I'm a little bit of a blog virgin/idiot so if you ask me a question in the comments section, trust me, I'm sitting here dying to answer you but haven't quite figured it out yet. As soon as I do, I'll respond. I promise I'm not ignoring you so I'm going to answer you in my blogs in the meantime.
HOLY CRAP! I just took a break to talk to the hospital pastor. He asked if we could pray and, of course, I'm always down for prayers for Christian! But this time I specifically asked if we could pray for his cough and gag reflex. After our prayer he walked out and the respiratory therapist came in to do percussion (pounding on his chest to loosen up junk) and Christian COUGHED!!! You cannot make this stuff up!!! Thank you, God! When people tell you God is good, believe them. God is good.
God is amazing.
Saturday, July 18, 2009
A Break.
Today was a nice break. We didn't do anything new, nothing experimental, just a break. I had a lot of much needed alone time, with Christian, of course.
Christian is moving even more now. A neurologist that I actually like came by and observed Christian. She made a comment that Christian's right arm really seems to be moving with intentional movement rather than reflexive or posturing movement. THIS IS GOOD - to get a neurologist to admit that SOMETHING is progressing is progress for me. She was a lot more of the 'let's see what he can do' attitude, which is my philosophy.
Christian now has periods of sleep and wakefulness. When he's sleeping, all is peaceful. When he wakes up, I know it. His breathing picks up, I can hear rustling around. He really reminds me of a newborn in his movement. He's also so strong he's about to bust out his arterial line. This is a line that measures your blood pressure in the most accurate way possible. His is especially sensitive because they had to do a "cut down" - I think that's what it's called - this is where they had to peel back his skin to actually look at his arterial vein because the vein is so tiny, they kept missing it. Anyway, they've had to restrain his left arm with TWO boards and a lot of tape. But he keeps breaking free from the tape. He is so strong! And the nurses keep saying so because he basically wrestles them when they're trying to change his positions. He had a nurse sweating today, although, by the looks of it, the nurse probably had a predisposition to sweat a lot.
I think it's so funny that Christian's stubborn personality shines through at the funniest moments. He has to be turned from side to back to side and he prefers his left side. So when he's on his back, he manages to wiggle himself back to the left. When he's on his right side, he'll keep his head turned to the left and struggle against laying on his right side. HE'S STUBBORN! But Manny remarked that maybe he likes that side so much because that was the position he liked to nurse in. I bet you any nurse or doctor would deny it but I choose to believe that reasoning.
So new developments...we're talking about starting a medication, I forgot what it's called, but it helps relax his muscles to improve his tone. Tone is the stiffening of muscles and locking of his joints he does when he postures. This can lead to muscle atrophy. So by giving him this medication, he will loosen up a bit and relax those muscles. We also discussed the gtube, which will be his feeding device. A little part of me is sad about this (surprise) because I want him to experience food and flavors and sushi. I'm so glad I didn't hold back when letting him taste things before the accident. I'm just sad he won't get to have any 1st birthday cake. Someday he'll be strong enough and on that day, he'll get a HUGE birthday cake!
We're also starting to talk about long term care. It will be A LOT! Meaning we have a long road ahead of us. But I'm so ready to get going.
Today I did some things to feel normal again. I watched some trashy reality television clips on Bravo.com, I caught up with the Mama's from my August Moms group, and I'm considering spending the night with Gabe on Monday so he can have some time with Mom and Manny can come stay with Christian. The more normal I make my surroundings, the more sane I can stay, and the stronger I can be for Christian.
Still praying hard for that cough and gag reflex.
Christian is moving even more now. A neurologist that I actually like came by and observed Christian. She made a comment that Christian's right arm really seems to be moving with intentional movement rather than reflexive or posturing movement. THIS IS GOOD - to get a neurologist to admit that SOMETHING is progressing is progress for me. She was a lot more of the 'let's see what he can do' attitude, which is my philosophy.
Christian now has periods of sleep and wakefulness. When he's sleeping, all is peaceful. When he wakes up, I know it. His breathing picks up, I can hear rustling around. He really reminds me of a newborn in his movement. He's also so strong he's about to bust out his arterial line. This is a line that measures your blood pressure in the most accurate way possible. His is especially sensitive because they had to do a "cut down" - I think that's what it's called - this is where they had to peel back his skin to actually look at his arterial vein because the vein is so tiny, they kept missing it. Anyway, they've had to restrain his left arm with TWO boards and a lot of tape. But he keeps breaking free from the tape. He is so strong! And the nurses keep saying so because he basically wrestles them when they're trying to change his positions. He had a nurse sweating today, although, by the looks of it, the nurse probably had a predisposition to sweat a lot.
I think it's so funny that Christian's stubborn personality shines through at the funniest moments. He has to be turned from side to back to side and he prefers his left side. So when he's on his back, he manages to wiggle himself back to the left. When he's on his right side, he'll keep his head turned to the left and struggle against laying on his right side. HE'S STUBBORN! But Manny remarked that maybe he likes that side so much because that was the position he liked to nurse in. I bet you any nurse or doctor would deny it but I choose to believe that reasoning.
So new developments...we're talking about starting a medication, I forgot what it's called, but it helps relax his muscles to improve his tone. Tone is the stiffening of muscles and locking of his joints he does when he postures. This can lead to muscle atrophy. So by giving him this medication, he will loosen up a bit and relax those muscles. We also discussed the gtube, which will be his feeding device. A little part of me is sad about this (surprise) because I want him to experience food and flavors and sushi. I'm so glad I didn't hold back when letting him taste things before the accident. I'm just sad he won't get to have any 1st birthday cake. Someday he'll be strong enough and on that day, he'll get a HUGE birthday cake!
We're also starting to talk about long term care. It will be A LOT! Meaning we have a long road ahead of us. But I'm so ready to get going.
Today I did some things to feel normal again. I watched some trashy reality television clips on Bravo.com, I caught up with the Mama's from my August Moms group, and I'm considering spending the night with Gabe on Monday so he can have some time with Mom and Manny can come stay with Christian. The more normal I make my surroundings, the more sane I can stay, and the stronger I can be for Christian.
Still praying hard for that cough and gag reflex.
Friday, July 17, 2009
Holding Christian
I didn't want to share my experience of holding Christian in the other blog because the other blog was so negative. So I thought I'd share that I did get to hold him. I was afraid to ask after a long day of discouragement for fear that someone would tell me no.
I finally decided that I wasn't going to let the day slip away without asking to hold my baby as was promised. It was the best gift. He was carefully placed in my lap through a spiderweb of tubes and wires. Someday he won't be so connected to something else and he'll just be connected to me. I didn't realize how big my baby was until I saw pictures.
I finally decided that I wasn't going to let the day slip away without asking to hold my baby as was promised. It was the best gift. He was carefully placed in my lap through a spiderweb of tubes and wires. Someday he won't be so connected to something else and he'll just be connected to me. I didn't realize how big my baby was until I saw pictures.
He fell into a deep sleep with his face angled toward me. It was such deep and relaxed breathing that during the CPAP period, the ventilator went to back up and kicked on because it thought he had stopped breathing. No worries, though. The respiratory therapist said he was just in deep relaxation. That's because he was sleeping in my arms. I could have fallen asleep there myself. I held him for almost 3 hours. I can't wait to do it again.
Emotionally Exhausted
Today was frustrating and emotionally exhausting.
It started out fine. Christian had an okay night. Just yesterday I spoke with the doctor about taking it one day at a time and letting Christian lead the way. I told her I don't need nor do I want a timeline for his care. I'm going by Christian's timeline. She agreed and said she was on the same page. Now there has been rumblings about a tracheostomy procedure which will allow him to breath on his own (kind of). I believe that Christian won't need one but the rumblings come from him still having a poor gag reflex and cough. I think he needs just a few more days and then we can make that decision.
Then came rounds.
This is where the doctors discuss a patient's care and plan of action. Well this is where the doctor decided to let everyone know she thinks he needs a tracheostomy and a g-tube (for feeding) and she's going to send the pediatric surgeons to speak to us about it TODAY. Um, what happened to being on the same page, letting Christian lead the way, taking it day by day talk we had yesterday? Was that just small talk? And she also added that she was sad to say but she didn't know if he would ever be able to breath without one. That's right, you DON'T KNOW, SO DON'T SAY IT. And this is based on a weak cough and gag reflex not NO cough and gag reflex. And why are we rushing? Can't we wait a few more days? This just made me mad. Because I felt like they were really pushing this and pushing for it fast.
So the surgeons visited and I had stepped out so my husband spoke with them. Luckily, they can't get him in until Tuesday or Wednesday. I'm comfortable with that. He gets those few extra days so that if he's strong enough, he'll show them. If not, we'll do what we need to do to move on to the next stage in his recovery. The way the surgeons explained it, the breathing tube is actually slowing his recovery process and that's why we have to move on with either a trach or progress with his cough and gag. I understand that. If it means Christian healing faster, we'll do it.
Another thing that pissed me off was that I found a Hyperbaric chamber available at the other major hospital in town. So I called and the woman said, "Yes, we've treated another infant who was a victim of near drowning. I'll have the doctor return your call." So he returns my call like this...
"This kind of treatment has not been shown effective with your son's type of condition. We are unable to treat you here but you can call this neurologist (so and so, forgot her name) who may be able to help you with hyperbaric treatment....okay, bye." It was that cold and dry. Luckily, a friend who's gone through the same thing said the HBOT service a hospital can provide isn't sufficient and that I needed a private facility. It looks like Phoenix, here we come! The lady there said she'd be happy to treat him and to get him HBOT as soon as he can travel. Again, here we come!
So after that, I'm already upset. I stopped home for some clothes and started looking at our pictures from Key West taken a month ago. I keep thinking if I had only know what was to come, maybe I would have been more patient, I would have spent more time playing...I would have been better. Well you know where that leads. Buckets of uncontrollable tears.
I'm not done. I get back to the hospital and the resident comes in. She says they were discussing long term care and that when Christian is ready to leave the hospital, maybe it would be a good idea to consider a home for long term care as a transition back to home. Her reasoning...because I'm pregnant and it might be hard on me. Is she f---ing kidding me? I was in disbelief. First of all, this is OUT OF THE QUESTION. And second, how much faith do you have in my son? If you don't have faith that he will continue to get better, I want another doctor.
After my husband walked in the room, I lost it. I couldn't take anymore. I didn't want to see or talk to another damn doctor again. The nurse I had today couldn't be found for most of the day, which seriously pissed me off. It was one of those days.
But it's done. And we're on to the next one. I can't wait to wake up to a new day tomorrow.
It started out fine. Christian had an okay night. Just yesterday I spoke with the doctor about taking it one day at a time and letting Christian lead the way. I told her I don't need nor do I want a timeline for his care. I'm going by Christian's timeline. She agreed and said she was on the same page. Now there has been rumblings about a tracheostomy procedure which will allow him to breath on his own (kind of). I believe that Christian won't need one but the rumblings come from him still having a poor gag reflex and cough. I think he needs just a few more days and then we can make that decision.
Then came rounds.
This is where the doctors discuss a patient's care and plan of action. Well this is where the doctor decided to let everyone know she thinks he needs a tracheostomy and a g-tube (for feeding) and she's going to send the pediatric surgeons to speak to us about it TODAY. Um, what happened to being on the same page, letting Christian lead the way, taking it day by day talk we had yesterday? Was that just small talk? And she also added that she was sad to say but she didn't know if he would ever be able to breath without one. That's right, you DON'T KNOW, SO DON'T SAY IT. And this is based on a weak cough and gag reflex not NO cough and gag reflex. And why are we rushing? Can't we wait a few more days? This just made me mad. Because I felt like they were really pushing this and pushing for it fast.
So the surgeons visited and I had stepped out so my husband spoke with them. Luckily, they can't get him in until Tuesday or Wednesday. I'm comfortable with that. He gets those few extra days so that if he's strong enough, he'll show them. If not, we'll do what we need to do to move on to the next stage in his recovery. The way the surgeons explained it, the breathing tube is actually slowing his recovery process and that's why we have to move on with either a trach or progress with his cough and gag. I understand that. If it means Christian healing faster, we'll do it.
Another thing that pissed me off was that I found a Hyperbaric chamber available at the other major hospital in town. So I called and the woman said, "Yes, we've treated another infant who was a victim of near drowning. I'll have the doctor return your call." So he returns my call like this...
"This kind of treatment has not been shown effective with your son's type of condition. We are unable to treat you here but you can call this neurologist (so and so, forgot her name) who may be able to help you with hyperbaric treatment....okay, bye." It was that cold and dry. Luckily, a friend who's gone through the same thing said the HBOT service a hospital can provide isn't sufficient and that I needed a private facility. It looks like Phoenix, here we come! The lady there said she'd be happy to treat him and to get him HBOT as soon as he can travel. Again, here we come!
So after that, I'm already upset. I stopped home for some clothes and started looking at our pictures from Key West taken a month ago. I keep thinking if I had only know what was to come, maybe I would have been more patient, I would have spent more time playing...I would have been better. Well you know where that leads. Buckets of uncontrollable tears.
I'm not done. I get back to the hospital and the resident comes in. She says they were discussing long term care and that when Christian is ready to leave the hospital, maybe it would be a good idea to consider a home for long term care as a transition back to home. Her reasoning...because I'm pregnant and it might be hard on me. Is she f---ing kidding me? I was in disbelief. First of all, this is OUT OF THE QUESTION. And second, how much faith do you have in my son? If you don't have faith that he will continue to get better, I want another doctor.
After my husband walked in the room, I lost it. I couldn't take anymore. I didn't want to see or talk to another damn doctor again. The nurse I had today couldn't be found for most of the day, which seriously pissed me off. It was one of those days.
But it's done. And we're on to the next one. I can't wait to wake up to a new day tomorrow.
Thursday, July 16, 2009
A Good Day
I had to write again and tell you what a great day it was! It was supposed to be an uneventful day. During rounds it was decided we really wouldn't do anything new until Christian showed some progress with his reduction in lung secretions and a stronger gag and cough reflex. Okay, fine by me. He did have a few more CPAP trials so he did his time. On the midday CPAP trial, both the nurse and I noticed that he was calmer while breathing on his own. His blood pressure was lower, his heartbeat was lower, his breathing was rhythmic, his temperature went down (this is good because his temp has been creeping up around 100 for a few days), and he was overall more peaceful and relaxed with almost no storming. The nurse told the doctor and so the doctor said to let him go for another hour by himself. So that was 2 hours on his own!
Anyway, the doctor came in to see for herself and she was surprised by how much better he was doing on his own breathing. She's still timid about extubating but she noticed how great he was doing and ordered 2 hours on, 2 hours off. So 2 hours breathing on his own, 2 hours with vent assistance continuously. Just an hour before that we had a conversation about a trach tube, extubation, reintubation, etc. I told the doctor, "I BELIEVE that when you take that tube out of his mouth he will have no trouble." I know Christian can do it.
So after this great progression, my husband and grandparents, and I went downstairs to eat dinner in the cafeteria while my mother in law stayed with Christian. When I came back, the nurse had put Christian in a little, white T-shirt. This is big because the kid has been naked since the morning of the accident. It was so nice to see him all dressed (half dressed at least) and ready for me to come talk to him. Then she surprised me with the news...I GET TO HOLD HIM TOMORROW! I just about cried. I cannot tell you how much I think this will help him heal and, of course, how much I will enjoy this with all my heart and soul.
Christian still has a long way to go. His movements are very reflexive and stiff but he gets his arms moving, almost like he's weightlifting or trying to warm up his arm to pitch. It reminds me of a newborn's first movements. His eyes are not focusing right now. Well, actually, I don't know if they are. They were rolled back so you could barely see his eyes and only see the whites. Today, they've come half way down when you talk to him. But everyday gets better and I'm so optimistic.
Oh, and we moved rooms. We're still on the PICU floor but we got kicked out of the room for the most critical patients. So we went from most critical to less critical. We've graduated.
What a day. I only hope tomorrow will be just as good. If not, I have today and I'm thankful for that. As a matter of fact, everyday that we have Christian is a good day.
Anyway, the doctor came in to see for herself and she was surprised by how much better he was doing on his own breathing. She's still timid about extubating but she noticed how great he was doing and ordered 2 hours on, 2 hours off. So 2 hours breathing on his own, 2 hours with vent assistance continuously. Just an hour before that we had a conversation about a trach tube, extubation, reintubation, etc. I told the doctor, "I BELIEVE that when you take that tube out of his mouth he will have no trouble." I know Christian can do it.
So after this great progression, my husband and grandparents, and I went downstairs to eat dinner in the cafeteria while my mother in law stayed with Christian. When I came back, the nurse had put Christian in a little, white T-shirt. This is big because the kid has been naked since the morning of the accident. It was so nice to see him all dressed (half dressed at least) and ready for me to come talk to him. Then she surprised me with the news...I GET TO HOLD HIM TOMORROW! I just about cried. I cannot tell you how much I think this will help him heal and, of course, how much I will enjoy this with all my heart and soul.
Christian still has a long way to go. His movements are very reflexive and stiff but he gets his arms moving, almost like he's weightlifting or trying to warm up his arm to pitch. It reminds me of a newborn's first movements. His eyes are not focusing right now. Well, actually, I don't know if they are. They were rolled back so you could barely see his eyes and only see the whites. Today, they've come half way down when you talk to him. But everyday gets better and I'm so optimistic.
Oh, and we moved rooms. We're still on the PICU floor but we got kicked out of the room for the most critical patients. So we went from most critical to less critical. We've graduated.
What a day. I only hope tomorrow will be just as good. If not, I have today and I'm thankful for that. As a matter of fact, everyday that we have Christian is a good day.
Slow and Steady Wins the Race
Christian is slowly progressing. He was taken off of Versed completely (this is his last sedative). His neurostorms aren't nearly as bad and he's having periods of sleep and wake that are apparent. Did I mention I love when he sleeps? Everything relaxes, he takes long, slow, deep, breaths, and he looks like my Christian, just a perfect little angel, untouched by the accident. So peaceful. When he wakes, he moves his arms, although they're reflexive movements, they're movements nonetheless. We call it weight lifting because he bends at the elbow like he's doing tricep curls. We also rolled up little gaws into little dumbbells so he has something to grab on to. This will also prevent his fingers from getting stuck in a clenched position. We're always working on his range of motion so that when he's better, he'll be able to move and his muscles won't be "stuck."
Big news in the last 24 hours are the results of his CPAP trials. These are trials where the doctors turn down his oxygen output to zero. He basically breaths on his own without extubation. They do this for an hour at a time and then test his blood gasses. He's done this 3 times and PASSED EVERY ONE!!! I'm so proud of him. He's just so strong. His reflexive movement of his right arm almost makes him look like he's going for the tube to pull it out. It's like he's saying, "I CAN DO IT MYSELF!!!" Now that's the old Christian showing through.
We aren't talking about extubation quite yet because his lung secretions (I think it sounds like someone with bronchitis and it's caused by his inhalation of water) are still abundant and he doesn't have a strong enough cough and gag reflex. That's fine with me. The doctor, who I love because she's upbeat and aggressive, yet cautious at the same time, doesn't want to set him up for failure. I totally agree. So once the secretions decrease, we'll be ready for extubation. I know it's right around the corner. Then Christian can focus on working on something else, rather than his breathing.
Also, I had a routine OB appointment this morning and the doctor gave me a surprise ultrasound. I told her that if she saw anything that told her what the sex was to give me a heads up so she started looking around. So now I'm pretty sure of who Christian and Gabe will be big brothers to. But I'm not telling until we have it confirmed in two weeks at our big ultrasound. I already know Gabe is the best big brother but Christian will be an awesome big brother, too.
Christian is still sleeping peacefully. Blessings to everyone.
Big news in the last 24 hours are the results of his CPAP trials. These are trials where the doctors turn down his oxygen output to zero. He basically breaths on his own without extubation. They do this for an hour at a time and then test his blood gasses. He's done this 3 times and PASSED EVERY ONE!!! I'm so proud of him. He's just so strong. His reflexive movement of his right arm almost makes him look like he's going for the tube to pull it out. It's like he's saying, "I CAN DO IT MYSELF!!!" Now that's the old Christian showing through.
We aren't talking about extubation quite yet because his lung secretions (I think it sounds like someone with bronchitis and it's caused by his inhalation of water) are still abundant and he doesn't have a strong enough cough and gag reflex. That's fine with me. The doctor, who I love because she's upbeat and aggressive, yet cautious at the same time, doesn't want to set him up for failure. I totally agree. So once the secretions decrease, we'll be ready for extubation. I know it's right around the corner. Then Christian can focus on working on something else, rather than his breathing.
Also, I had a routine OB appointment this morning and the doctor gave me a surprise ultrasound. I told her that if she saw anything that told her what the sex was to give me a heads up so she started looking around. So now I'm pretty sure of who Christian and Gabe will be big brothers to. But I'm not telling until we have it confirmed in two weeks at our big ultrasound. I already know Gabe is the best big brother but Christian will be an awesome big brother, too.
Christian is still sleeping peacefully. Blessings to everyone.
Thank You
The amount of prayers, thoughts, love, and support has been overwhelming in response to Christian. It really amazes me how nice and caring people are. I mean I knew people were nice, I try to be nice, but you never really experience the kindness and faithfulness of human nature until you go through something like this. It's awe inspiring. I've been told that people all over the world are praying for Christian. And I am so grateful for each and every one those thoughts and prayers. I truly believe they have helped and are helping him heal every day.
I'm going to have to go to Costco and buy thank you cards in bulk. This is not a burden, this is a blessing. I can't wait to do it. From friends who have brought me soup and cookies, to my Summer 08 Mom's group and their unwavering support, to my family and friends who call and check on Christian, my family has really been blessed with love and support. Thank you isn't enough but THANK YOU!!!
The gravity of Christian's situation is finally setting in. This is long term. He will need many therapies and rehabilitation. I'm ready for it. I'll do whatever it takes for him to get better. Luckily, he is still young and his brain is still growing. I know he'll make a recovery on his own time. And we'll be with him every step of the way. I know he can do it. We may not get the old Christian back and this makes me sad because I will miss him terribly. But we have a new Christian who I love even more and that's better than not having him here at all.
I'm actually a little excited about exploring alternative therapies, one of which is Hyperbaric Oxygen Treatment (HBOT). It's experimental but I've read nothing but good things about it, especially for victims of brain injuries. This will cost money and will most likely not be covered by insurance but I don't care what we have to do. Where there's a will there's a way. This is why I've added a DONATE button to this page. It feels a little weird but I'm willing to do anything for my child's recovery so if it means asking for donations or raising funds, consider it done. If you do decided to donate, I can't thank you enough. But the same goes for your thoughts and prayers. Those are the same as money to me.
Again, thank you so much to anyone who's thought of or prayed for Christian. It means so much to us. I can't wait for you to see what your thoughts and prayers can do!!!
I'm going to have to go to Costco and buy thank you cards in bulk. This is not a burden, this is a blessing. I can't wait to do it. From friends who have brought me soup and cookies, to my Summer 08 Mom's group and their unwavering support, to my family and friends who call and check on Christian, my family has really been blessed with love and support. Thank you isn't enough but THANK YOU!!!
The gravity of Christian's situation is finally setting in. This is long term. He will need many therapies and rehabilitation. I'm ready for it. I'll do whatever it takes for him to get better. Luckily, he is still young and his brain is still growing. I know he'll make a recovery on his own time. And we'll be with him every step of the way. I know he can do it. We may not get the old Christian back and this makes me sad because I will miss him terribly. But we have a new Christian who I love even more and that's better than not having him here at all.
I'm actually a little excited about exploring alternative therapies, one of which is Hyperbaric Oxygen Treatment (HBOT). It's experimental but I've read nothing but good things about it, especially for victims of brain injuries. This will cost money and will most likely not be covered by insurance but I don't care what we have to do. Where there's a will there's a way. This is why I've added a DONATE button to this page. It feels a little weird but I'm willing to do anything for my child's recovery so if it means asking for donations or raising funds, consider it done. If you do decided to donate, I can't thank you enough. But the same goes for your thoughts and prayers. Those are the same as money to me.
Again, thank you so much to anyone who's thought of or prayed for Christian. It means so much to us. I can't wait for you to see what your thoughts and prayers can do!!!
Tuesday, July 14, 2009
Little Hands
I have to remember this moment. Today was a good day. Christian has been going through something called neurostorms. His brain doesn't quite know how to work yet so it has these little "storms." He will tense up, posture, his eyes will roll back, his blood pressure goes up, his heartbeat increases, and so does his breathing. And then it's over. It's almost like a seizure but not. It's a normal part of a brain injury.
Anyway, as you know, we had a rough day yesterday. He had a lot of neurostorms. He was agitated constantly. By touching, his breathing, loud noises, everything. But today, he had such a good day. He had neurostorms but they weren't on top of each other. He was just relaxed. He peed a lot! At first they couldn't get enough out of him and he has been swollen for almost 5 days. So the doctor thought the excessive urination could be a symptom of his brain injury. They ran tests and NO! He's just correcting his body for all the liquid he was holding. Show them again and again, Christian, what you can do baby boy!
I have to remember this moment. The reason is that he is so relaxed right now. His blood pressure is normal, his heart rate is normal, his temperature has come down. I was talking to him and admiring him in his relaxed state. His hands, I noticed had unclenched. They've been clenched and firms because of the posturing for the last 24 hours or so. But they are loose and open right now. I played with his fingers and he responded by moving his little finger tips. It was amazing. His hands were like before the accident. When he would sleep, his hands would be open and I would touch his finger tips and he'd fan them out. Well he was doing that!!! It was the best moment. I knew my Christian was there. I knew it! He was so normal in his sleeping. It was like my old Christian.
Now I know tomorrow might not be like today but I'm holding that moment with him and his little hands close to me. I know he's coming back to me and he shows me signs all the time. I want to remember this moment forever.
Anyway, as you know, we had a rough day yesterday. He had a lot of neurostorms. He was agitated constantly. By touching, his breathing, loud noises, everything. But today, he had such a good day. He had neurostorms but they weren't on top of each other. He was just relaxed. He peed a lot! At first they couldn't get enough out of him and he has been swollen for almost 5 days. So the doctor thought the excessive urination could be a symptom of his brain injury. They ran tests and NO! He's just correcting his body for all the liquid he was holding. Show them again and again, Christian, what you can do baby boy!
I have to remember this moment. The reason is that he is so relaxed right now. His blood pressure is normal, his heart rate is normal, his temperature has come down. I was talking to him and admiring him in his relaxed state. His hands, I noticed had unclenched. They've been clenched and firms because of the posturing for the last 24 hours or so. But they are loose and open right now. I played with his fingers and he responded by moving his little finger tips. It was amazing. His hands were like before the accident. When he would sleep, his hands would be open and I would touch his finger tips and he'd fan them out. Well he was doing that!!! It was the best moment. I knew my Christian was there. I knew it! He was so normal in his sleeping. It was like my old Christian.
Now I know tomorrow might not be like today but I'm holding that moment with him and his little hands close to me. I know he's coming back to me and he shows me signs all the time. I want to remember this moment forever.
Two Steps Forward, One Step Back
Tuesday, July 14, 2009
Almost a week after the accident. It seems we’ve come so far but have so far to go. Yesterday was a sucky day. I get a lot of “Well…he’s doing this but he’s not doing that.” It’s tough because nobody really knows what it all means. I’ve been reading online about others that went through what Christian did and I’ve been reading blogs but while they are helpful and insightful, they also tend to make you feel less hopeful reading the prognossis of other little ones who suffered near drowning. That along with the doctors hemming and hawing, and don’t even get me started on the neurologists, make for a pretty helpless feeling day.
Yesterday I had to get away. Not away from Christian because I will live here if I need to. As long as Christian is here, I am here. But from everyone. I love my family and friends and that they constantly call and check up on Christian. They’re visiting every day. But it’s tough when you don’t have an update on his condition. Or there’s nothing fun and exciting to report. Or when the doctor tells you negative things. You don’t really want to talk to anyone after that. Everyone wants to be around me to make sure I’m okay and I’m not that person who needs someone there all the time. I’m the opposite. I desperately cherish my alone time. Where I can be alone with my thoughts, my fears, my sobbing, and so I can just talk to God one on one. So I left the hospital, sat in my truck and bawled like a baby. I talked to God and I declared that Christian is coming home with us. He will sleep in his bed, he will play with his ball, he will come back to us and that was that.
I came back up to see Christian and he actually tried to keep his eyes open for me and actively look at me for the first time that day as I was talking to him. My faith was restored. Little miracles. Even just him trying to respond to me by opening his eyes tells me he is still fighting. The doctors don’t know what he can do. Nobody does but God. And I think God isn’t done working His miracles yet.
There’s a night nurse here that…well let’s just say if she was off her shift tonight and the next and the next I wouldn’t mind. She’s a good nurse but hardly positive. She’s old school. She has a quasi-beehive and everything. She says things like this…
“Well, the neurologists are just trying to be realistic.” – Nurse K
“Is he taking those breaths on his own?” – Me, after they switched from bagging to ventilator and back.
“Well, that’s just a reflex.” – Nurse K
“It’s been hard.” – Me
“Well, it’s not going to get any easier.” – Nurse K
Now, this doesn’t occur in the same conversation. These are just little comments she makes that counteract any kind of hope you draw from a situation. And if you’ve ever dealt with a neurologist, you know it’s always gloom and doom but she seemed to be the only nurse that felt the need to defend them.
Last night Christian had his MRI and I’m not expecting them to tell me good news. Not because he’s not healing, I truly believe he’s being healed, it’s because I’m preparing myself to remain faithful no matter what the doctors say. The truth is they don’t know. There is so much about the brain they simply only guess at.
After the MRI, I layed my head down next to Christian’s in his beddy (everything ends in –y at my house…beddy, nappy, juicy, ouchy, sicky, etc.) I cried next to him and looking into his little eyes I wondered if I’d ever see my Christian again. The loud, demanding, screaming, and yelling, full of life Christian that was here just last week, tugging on my shirt to nurse or my pants to get picked up. I know Christian is under all that mess just waiting to bust out!
So after Nurse K crushed me last night I woke up this morning to overhear that Christian tried to cough!!! This is amazing because it means things are rewiring and trying to work. He’s beginning to spike a little fever because he may have aspirated some vomit. He’s been tolerating feedings well but I’m having a hard time producing as much milk as they need (I was having problems before the accident but he was on solids so it was no big deal). I allowed them to supplement with formula so I think he may be rejecting it. He wants Mommy’s milky. So I’m trying to bolster up my supply. I drank Gatorade and I’ll try to get someone to bring me some oatmeal cookies.
All is well for the moment. Manny is sleeping and the room is cold. Christian was awake a moment ago and I’m looking at his fat, sausage toes. He makes progress every day as his brain tries to get it together and relearn how to control his body. But at this moment, most of all, I am happy because there is a changing of the guard from night nurse to day nurse and Perla, my favorite nurse of all of them, just walked in and announced she’d be Christian’s nurse today. It will be a good day today.
Almost a week after the accident. It seems we’ve come so far but have so far to go. Yesterday was a sucky day. I get a lot of “Well…he’s doing this but he’s not doing that.” It’s tough because nobody really knows what it all means. I’ve been reading online about others that went through what Christian did and I’ve been reading blogs but while they are helpful and insightful, they also tend to make you feel less hopeful reading the prognossis of other little ones who suffered near drowning. That along with the doctors hemming and hawing, and don’t even get me started on the neurologists, make for a pretty helpless feeling day.
Yesterday I had to get away. Not away from Christian because I will live here if I need to. As long as Christian is here, I am here. But from everyone. I love my family and friends and that they constantly call and check up on Christian. They’re visiting every day. But it’s tough when you don’t have an update on his condition. Or there’s nothing fun and exciting to report. Or when the doctor tells you negative things. You don’t really want to talk to anyone after that. Everyone wants to be around me to make sure I’m okay and I’m not that person who needs someone there all the time. I’m the opposite. I desperately cherish my alone time. Where I can be alone with my thoughts, my fears, my sobbing, and so I can just talk to God one on one. So I left the hospital, sat in my truck and bawled like a baby. I talked to God and I declared that Christian is coming home with us. He will sleep in his bed, he will play with his ball, he will come back to us and that was that.
I came back up to see Christian and he actually tried to keep his eyes open for me and actively look at me for the first time that day as I was talking to him. My faith was restored. Little miracles. Even just him trying to respond to me by opening his eyes tells me he is still fighting. The doctors don’t know what he can do. Nobody does but God. And I think God isn’t done working His miracles yet.
There’s a night nurse here that…well let’s just say if she was off her shift tonight and the next and the next I wouldn’t mind. She’s a good nurse but hardly positive. She’s old school. She has a quasi-beehive and everything. She says things like this…
“Well, the neurologists are just trying to be realistic.” – Nurse K
“Is he taking those breaths on his own?” – Me, after they switched from bagging to ventilator and back.
“Well, that’s just a reflex.” – Nurse K
“It’s been hard.” – Me
“Well, it’s not going to get any easier.” – Nurse K
Now, this doesn’t occur in the same conversation. These are just little comments she makes that counteract any kind of hope you draw from a situation. And if you’ve ever dealt with a neurologist, you know it’s always gloom and doom but she seemed to be the only nurse that felt the need to defend them.
Last night Christian had his MRI and I’m not expecting them to tell me good news. Not because he’s not healing, I truly believe he’s being healed, it’s because I’m preparing myself to remain faithful no matter what the doctors say. The truth is they don’t know. There is so much about the brain they simply only guess at.
After the MRI, I layed my head down next to Christian’s in his beddy (everything ends in –y at my house…beddy, nappy, juicy, ouchy, sicky, etc.) I cried next to him and looking into his little eyes I wondered if I’d ever see my Christian again. The loud, demanding, screaming, and yelling, full of life Christian that was here just last week, tugging on my shirt to nurse or my pants to get picked up. I know Christian is under all that mess just waiting to bust out!
So after Nurse K crushed me last night I woke up this morning to overhear that Christian tried to cough!!! This is amazing because it means things are rewiring and trying to work. He’s beginning to spike a little fever because he may have aspirated some vomit. He’s been tolerating feedings well but I’m having a hard time producing as much milk as they need (I was having problems before the accident but he was on solids so it was no big deal). I allowed them to supplement with formula so I think he may be rejecting it. He wants Mommy’s milky. So I’m trying to bolster up my supply. I drank Gatorade and I’ll try to get someone to bring me some oatmeal cookies.
All is well for the moment. Manny is sleeping and the room is cold. Christian was awake a moment ago and I’m looking at his fat, sausage toes. He makes progress every day as his brain tries to get it together and relearn how to control his body. But at this moment, most of all, I am happy because there is a changing of the guard from night nurse to day nurse and Perla, my favorite nurse of all of them, just walked in and announced she’d be Christian’s nurse today. It will be a good day today.
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