After a couple of rough days post-op, things are really starting to get better for us! Thank God!
Our major issue the first few days were getting his pain under control..he'd kick right through all the drugs, obviously uncomfortable. It turns out, he was having an allergic reaction to the blood transfusions he was getting. Poor baby! I feel sick thinking about how uncomfortable he was, probably itching from the inside out. It's very very rare for babies to have this type of reaction to blood. Of course, Clay has to keep everyone on their toes! If Clay ever needs blood again, we'll have to make sure he gets Benadryl before the transfusion. It seems to be nothing too concerning, but it definitely explains why he has been so hard to knock down with the sedation and pain meds. I'm sure he was absolutely miserable! Thankfully, that's behind us.
Since Friday, we've made great progress!
...His nitric oxide is currently down to 3..his milrinone dosage has been cut in half. Both of those should be gone in the next few days if he keeps it up!
...His catheter was taken out..and so was his replogle (the big huge tube going down his nose).
...He has a feeding tube and we've worked our way up to 20mL of continuous feeds, and that's increasing daily..hopefully he'll be at full feeds soon and we can get rid of the TPN fluids and lipids!
...We should be able to get his chest tube out in the next couple days (which is draining gunk out of his chest from surgery).
...And his morphine dosage is slowly coming down, too. He's not requiring nearly as many extra doses of sedatives either! It will take a long time to get him off of the morphine...and Clay will not be happy going through withdraws. Please pray he can be weaned easily.
...He had a 'sedation holiday' today, where his morphine was turned off for a couple of hours and he did well with that! I think it helped that momma was holding him through that time, too ;)
...YES! I got to hold my baby today!!! We got some really good time together.. I'm sure it felt so good for Clay to get out of that ol' bed for a while..the poor little guy is so stiff. Once he's more mobile (and it doesn't take 3 people to get him and all of his accessories out of bed), he'll never be in his crib!
I am just feeling SO relieved that things are progressing so well. All of the doctors & surgeons are really surprised that he's bouncing back so quickly. They were expecting a much much sicker baby after surgery. Clinically, it may be surprising...but I know it's because our prayers are being heard and Clay's fighting spirit ain't backin' down! All of your unwavering prayers and support is getting us through..and words cannot explain our thankfulness to each and every one of you.
I am so stinkin' proud of my sweet baby boy. He is just amazing! Y'all keep praying for his total healing.
Lots of love and peace to you all!
He is a champion - must be hereditary!
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