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.

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.

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.

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.

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!!!

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.

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.