*Note: I started writing this post on Thursday and finished it early Saturday morning! I’ve been a bit busy (as you can read about in the next post). I wrote this first part on Thursday so just understand that as you see me reference Friday. Gosh I hope this isn’t confusing, life is just moving soooo fast right now. Sorry.*
Sooo much to update.
He was extubated (from his breathing tube) a couple of days ago. He had to have a few breathing treatments with the nebulizer and he still has a bit of a nasty cough but he is getting better. He received two blood transfusions and the hemocrit number is back in the 40’s where they’d like it -it was down to 19.
He goes up and down on the amount of fluid coming out of his stomach. If it’s more than 20cc in 8 hrs they have to give him fluids through the IV to make up what he’s losing. Sometimes it’s up to almost 50cc and sometimes it’s in the teens. The Dr. said the most important thing is the color. When it’s green that’s the worst. That’s bile that should be in the intestine, not coming out of his stomach. The green is steadily disappearing. Yesterday is was the color of a dark beer because it had some old blood in it. Today it was much lighter while I was there. My Mom just got back from visiting him where she said during the last 8 hr period he had NO output and so far, during the next 8 hr. period, it was only 10cc and CLEAR!!! The nurse encouraged the night Dr. to go ahead and turn the pump off and “put the repogal to gravity” and see how he does tonight but he wants to wait for the day Dr. (Dr. C) on Friday who is his primary. Silly man. I’m sure he knows what he’s doing but the sooner we get him to gravity, the sooner we get that tube out, the sooner he eats and the sooner he comes home.
This morning Dr. C said that she hopes to “have him on gravity Friday, tube removed Saturday and feeding by Sunday so fingers crossed”.
As long as his bloody stools are within what’s normal for after surgery and all goes well with eating, that’s the plan. If for some reason he continues to bleed like he was, they will have to do a GI scope but they can’t do that until he’s completely healed from the surgery.
Today his primary nurse (and our favorite-she is AMAZING and really really goes the extra mile-he has even really started responding to her voice) told me she may be able to put him in a chair and roll him over to some windows so he can look out. She’ll have to put him on a tank for the oxygen and roll his IV stuff with her and I don’t know how she’ll do the stomach pump but I hope she was able to. I’ll have to ask her tomorrow (Friday).
*Note: Before I was able to publish this it was 12 am Saturday! On Friday the nurse said he had two poopy diapers and NO BLOOD!!! Yay!!! I didn’t get to ask his day nurse if she was able to get him to a window because I didn’t get to go see him during the day Friday since I was recovering from my procedure (which I will explain in my next post).
Friday night we took Jayden to visit Levi and we noticed his repogal (stomach pump tube) was gone! They removed it! So hopefully we can start feeds tomorrow! I have already started preparing my mind for him to come home. I’ve started picturing what it will be like with him here.
Until now I’ve just spent so much time surviving the moment. I know that with feeding comes a HUGE amount of anxiety for me. Each feeding is extremely stressful for a lot of reasons. I worry about his ability to feed because of the Down syndrome and I worry about how his digestive system is handling the milk. I’m terrified every moment that his intestines won’t be able to handle it and they’ll die and perforate like they did the first time or unexplainably bleed like they did the second time.
This time we are going to start him on an “elemental formula” (when I told Josh this he said, “What, like air?” lol!!). It’s amino acid based pre digested (like yogurt is predigested by live cultures) instead of protein based like normal formula or breast milk. It should be much easier to digest. As long as that goes well, we will slowly introduce the breast milk. I’m just so beyond ready to have my son home.
Josh and I have decided to put up the crib this weekend in anticipation. I have this little bed side cradle I bought before he was born that I’m still hoping he’ll fit in when he gets home. But just in case, I’d like to have the crib already set up. I’m also just finally in a place mentally where I want to have the nursery organized and finished. It took me a long time to get here. It was a long and difficult pregnancy with one hurdle after another and getting to this point has been a journey.
It breaks my heart that he outgrew all of this newborn clothes and diapers before he ever got home and got to wear them. But I hope for the bittersweet moment of seeing those clothes on a friend’s baby someday in the future.
I think Jayden is going to be an amazing big brother. He is so kind and gentle with Levi every time we visit him and he’s like that with all animals too. I don’t know how he’ll feel about sharing a room but I think that will be a slow transition once we get the crib up anyways.
I’m getting a head of myself.
For now I need to focus on getting Levi to eat and praying against anymore problems with his intestines. But it feels nice to, for the first time, really be able to imagine what it will be like to have my baby boy home.