I left the hospital at 1am on Tuesday into Wednesday as Liam was being rocked to sleep after some poor feedings and fussiness. By 4 am, the attending doctor called and told me to come back. Liam had a serious episode and was having trouble breathing- something I had mentioned in an earlier post as a concern. I had had 4 doctors during the day Tuesday to look at him but they weren't concerned. Sigh. He was extremely dehydrated and his entire body inside was just unhappy. I wish it was more concerning earlier so it didn't have to had such a result, but it is what it is.
Its now Thursday morning, 8 days post surgery, and he is in ICU, with a breathing tube breathing for him. It seems that this is being caused by fluid in the lungs that just won't leave and not letting him breathe easily. The next step is going to be inserting chest tubes into the lungs to drain the fluid. He is on IV fluids to hydrate him now. Liam was on an aggressive dose of diuretics this entire time and they have taken a toll. They pulled them back on Monday night and within that day, the fluid came back and he was dehydrating more.
This has been gut wrenching to watch, particularly because we've now been given 2 different discharge days and we are suffering set backs so much later in the game then anticipated. We had just began breathing easier, unlike the little man. Alex even went back home on Monday and to call him at 4am on Wednesday, was extremely tough news to break.
The breathing tube is hard to see but it is nice to see him breathing more evenly and not working so hard. The original concern was that his lung collapsed and thankfully, it hasn't. The chest tubes are going to be equally as difficult but like the original surgery, it is what will fix him and that's all I want, my healthy baby boy. Probably the worst thing is I can't hold him..its been 2 days now and I'm pretty emotional. He is sedated for the most part, stirs occasionally. It looks like Liam will be like this for several days and in my heart of hearts, I hope he realizes that we are right here next to him. For all the parents out there, kiss your babies and hug them tight tonight. Its the one thing I want to do and just can't.
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Theresa --
ReplyDeleteYou are not alone. Every Mother reading this blog understands the pain of not being able to hold and comfort your child in this difficult time. We are all sending you positive energy, prayers and any other goodness we can muster up. Liam has a great staff caring for him... you and Alex need to take care of each other --events like this can drain everything from a parent. I am not far away if a friendly face would help and CHOP is like a home away from home for us. Please let me know how I can help.
Love,
Kim
you are an amazingly string person! i am just minutes away. let me know what i can do. he knows you love him more than life. he can can feel your presence. just think warm thoughts. he is a fighter!
ReplyDeleteLove you,
Maureen
Keep talking to him. He knows you are there.
ReplyDeleteFrom one parent to another you and Alex are not alone and you are stronger than you think. At this moment in time you are doing everything you possibly can for your little boy and his health. It may not seem like much but you staying strong taking the good with the bad and being there for him is the most important thing you can do right now. The setbacks are the worst part especially when it seems like your child has beaten all expectations. I truly feel your pain with seeing all the tubes, machines, and equipment necessary for his survival. It does eventually get better and little by little each machine and tube disappears as quickly as it appeared. His oxygen level sounds like it is improving which is definitely a plus. The lungs are a very scarey thing and extremely tricky. The best advice I can give you right now is live in the moment celebrate and focus on every positive milestone no matter how small even though the doctors will try and cloud it with more negative. We will keep up the prayers and you stay hopeful, babies are extremely resilient especially Liam.
ReplyDeleteAll our love and well wishes for a speedy recovery,
Sara