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!
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We will keep Christian in our prays all day tomorrow!
The g-tube will help, we have a few ex MIC-key button wearers. I pray the trach brings him strength, and inches him closer and closer to his ultimate goals. I pray the surgery goes swiftly, safetly, and as easily as possible for all.
As for the 2 hour distance.... many times we must sacrafice for our children, and one day our children will sacrafice for us. 30 days with extra help and care may just speed up the long road, or aid greatly in a prospurous consistant steady road forward!
I'll be keeping Christian and your whole family in my thoughts and prayers. Praying that Christian's surgery goes well. As the Dr's have explained it, sounds like you're doing the right thing. I'm so sorry that it sounds like your little man will have to go to the transitional facility which is a trek away. Any chance that you can stay near there, or are there relativces facilities to stay at the place to lessen the travel burden? Not ideal...but relatively short-lived in the grand scheme of things. Wish it was easier for you though. (((Shauna))). That is great news about the HBOT treatments and especially about the other case...hope springs eternal. Keep fighting Christian and Shauna!!
I'm sorry you feel so uneasy about all this, but he is such a fighter and so strong he may get his cough and back so quick and prove those doctors wrong, he seems to be good at that!! The transitional facility sound crappy now, but 30 is nothing as compared to the years and years to come that you will get to have with him at home, hang in there, you are an amazing person Shauna!! I will be praying for your little fighter during his surgery tomorrow, stay strong Christian and keep fighting!! Go Christian Go!
God Bless you!
I pray that the trach will be out in no time. I pray for Chrisian's gag and cough reflex to get stronger and stronger by the minute. With God, all things are possible!
hugs,
Tracy
I will be saying extra prayers today, as Christian has his surgery. I hope his recovery goes smoothly as well. I agree with the others -- the 30 days will be so short compared to having him home with you forever!! :) Hang in there, Sweetie. I'm sure it's frustrating to feel like there are no other alternative for Christian right now, but just know that you're doing the best for him by continuing to be his advocate, his voice and his mommy! HUGS!!
Sweetie, you don't know me, but Krista (Shaun's mom) has shared your story and the link to your blog. I am AMAZED at Christian's awe-inspiring progress and refuse to believe that he will be anything but the rambunctious little boy you remember.
I wanted to offer this up. A dear friend of mine was in a horrific auto accident a year and a half ago. After receiving incredibly incompetent hospital care and almost dying, she had to receive a trach. Her trach has since been removed and a cosmetic surgeon operated on the scar that is no longer even visible!
I'm with you. Think of the trach as temporary and put your faith in our all-powerful and merciful God that he brings Christian back to you.
shauna, i pray the surgery goes well for baby christian. i know it's so hard when you as a mom want something and noone seems to feel the same. stay strong shauna. christian is a lucky boy and he a FIGHTER!!! i can't wait until the day we see him running around too!
Praying for you son! My son has a trach since 3mos, different situation, but feel free to pm me (ff) with any questions, I would be happy to help, my saving grace http://www.tracheostomy.com/forum everyone there is SOOO helpful with everything from rehab questions to day to day care etc.
Becca (minneymouse ff)
www.babyblogs.com/jasper - my sons blog his trach was in feb 09 if you look thru the archives
Thinking of Christian today. I imagine he's getting ready to head into surgery soon. I also thought all along that the trach would be temporary. Hopefully it will aid in his recovery...
I was just thinking, if he did have to go to Pheonix, could you stay in a Ronald McDonald House or something? So you could be close? My husband and I save soda can tabs, and have been for years. We donate them to RMH, and somehow they make money off them...just a thought!
I even looked it up for you!
Here is the information on the Phoenix RMH:
http://www.rmhcphoenix.com/content/view/115/148/
Hope that opens an option for you!
Caroline -
Thanks for the information about RMH. That's exactly what I had mind so I'm really hoping it will work out. I'll check out the link.
Thinking of Christian right now during his surgery. I know all will go well and you are doing what is best for Christian. I hope that the trach is temporary and it gives him the little boost he needs to breathe on his own. I'm so sorry you can't take him home right away but maybe it will help in some way to be there.
Thinking of you as always...lots of love.
Mel
We prayed again for Christian last night and I'm praying for him now as he's in surgery. I know that God will heal him and he will recovery in his own time. Keep faith that the doctor's are doing what they feel is best for him. We're all with you.
Thinking of you guys today. I know what you must be thinking about the trach and the g-tube, but you are NOT giving up on him breathing on his own or eating by mouth. That's not what this means at all. It just means he needs extra help right now. Those things will help him heal, and he will get a little better every day! No one knows exactly what will be the best for him, but you are doing your best, and coupled with all of the other opinions, this sounds like what's next in his journey for now - the road constantly changes, you know. Hoping the surgery is going smoothly for all of you, and it's the last one for a long time! Hugs from his buddy Cici!
Shauna-wanted to let you know that i stayed at a RMH while Julia was in the NICU, and it was a Godsend...just make sure you get in contact when you know Christian will need to go there, the rooms fill up quick! I am so happy to hear everything went well today, so many continued prayers coming your way! Kepp it going Christian!!!
I am hoping all the best for little Christian! My father was in an accident a little over a year ago and suffered an anoxic brain injury. He also had to have the g-tube and trach, which my brother and I had to give the ok on, a very hard decision. But he no longer has either (they were both removed during his 30 days in the transitional facility). Little Christian is a fighter and I'm sure both the g-tube and trach will be out soon. Be strong little buddy! And hang in there Shauna!
Praying very hard for Christian and the whole family.
Doug and Joy Simmons (from FF)
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