Kade had surgery around 4pm today and he did fine. They inserted the broviac into his neck/chest with no problem. This line that they put in will serve as his central IV line and can last for years if necessary. He will get all his IV fluids needed through this line. Also, they cleaned up his incision from his stomach surgery really good. As the days go on, we learn more and more how serious his condition is.
Each nurse that sees us and doesn't know what happened Sunday think we are going home very soon. There are so many nurses that have treated Kade and come to check in on him all the time. They are totally shocked when they see him on a vent and back in the warming bed like he originally started (he had graduated to a crib when we moved to the new room). They all expected us to be home by next weekend or so. When I tell them what has happened, you can't help but notice the look of worry and sadness on their faces. I have tried very hard not to Google anything about his new condition...but I can tell you this....we know Kade is a fighter already, but he has to put up the fight of his life to get through this, literally.... It is so sad to see where we were and where we are right now. We had the left foot out the door of this hospital and now being told we will be here months and anything can happen at any time is such a low blow!
When they had to take out the majority of Kade's bowel, he had what was called a Volvulus (twisting of small intestines that cuts off blood supply to small intestines and causes it to die). By having to take out so much of his bowel, it means now he has what is called Short Bowel Syndrome. As I have said in other blogs, I think, the first big issue with this is the reliance the baby may have on TPN which can cause MAJOR liver damage if used for an extended period of time. They are anticipating him being on this for months possibly. He also has a stoma, ostomy, & drain tube. They may be pulling the drain tube tomorrow. I also heard them say that they are going to start weaning him off the vent by tonight and hopefully he can be off by tomorrow. I sure hope so because he hates it! He had his eyes open this morning and his eyebrows were curled up like he was hurting. When I told the nurse that, he gave him some Ativan to make him rest easier. THANK GOD! I can't see this poor child in much more pain.
Thanksgiving is tomorrow.....we finally came home tonight. As hard as it was to leave, I miss my other baby so much and she misses us! She has been having a fantastic time with all her family though. It is just hard for us being torn between both children. She is actually lying in bed on my shoulder right now and I am soaking up every minute of it. :) She is our only bit of sanity right now, except she says things that rip your heart out like... "mom, we have to make Kade's Christmas list for Santa and the elf!" As thoughtful as that is, it just reminds us that he won't be home for Christmas. This is the first year she gets it for Santa and it is going to be confusing for her. We have told her that he won't be coming home for a long time and she seems to understand.
I haven't had a chance to do this, but I wanted to thank each and every one of you for your calls, texts, facebook messages, prayers, food, gift cards, babysitting offers, etc etc. We are absolutely blessed to have such a wonderful group of people surrounding us for this very trying and emotional time in our lives. We were visited by Jodi's pastor and his lovely wife last night (people who we had never met) and they were the nicest people and gave us many laughs. I am still laughing about him and the hams he had been giving out all day. Also, Ms. Rose brought us the best dinner from Byrons Bistro. It was fantastic! Best meal we've eaten in weeks! Even though I am back to no appetite, I was able to eat some of that and it was delicious!!!
Thank you all again so much and please continue to pray for all of us.
xoxo
G
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