The highs of the day were very high! This morning the doctors were considering another bronchoscopy (the procedure he had yesterday to remove the icky stuff in the upper left lobe of his lungs) but decided to try to move him off of the CPAP instead to see if he could try to clear it on his own by coughing, crying, etc. I was thrilled to see that uncomfortable looking thing come off of his face. For the first time since early Monday morning we were able to see his whole face at once, and even with all of the red marks from the tape, it was a beautiful sight to see. Even better than that was his Sats, which have stayed at 100 since the CPAP was taken off! This was a huge test for Judah and we were expecting to just give him a break from the CPAP rather than taking it off entirely. He proved that he can oxygenate himself just fine without it though, so they moved him back to a nasal canula.
Since removal of the CPAP, the swelling throughout his body has been subsiding and he is starting to look like the baby we sent to surgery in the first place. He has also been much more alert and we spent a lot of time just staring into each other's eyes today :) I know he's starting to feel better because his eyes were more open today than they ever have been. He was also allowed to eat for the first time today. We fed him mostly by the bottle because we don't want him working very hard. I did get to nurse a little as well and I think he's going to get the hang of it again without too much trouble when he's stronger.
For the first time today I found myself wondering how I could possibly handle any other setbacks. The end of the day showed a lot of progress and satisfaction, but the morning was another story. First of all, Judah had a very swollen belly from the air that was being forced down his lungs and throat from the CPAP machine which looked very uncomfortable. Also, the cardiologist came by to do an ultrasound because the PICU doctor thought is perfusion wasn't great yet. The ultrasound tech and the cardiologist said something quietly to each other at the beginning of the scan and looked concerned but didn't tell me anything. The cardiologist left without saying anything and the tech guy continued to look at Judah's heart for a really long time as if he were searching for something. I started trying to interpret his facial expressions, knowing that he couldn't tell me anything. And my mind started to race with questions and to be honest, fear, that he might have to go back to surgery. The situation was resolved when Dr. Woods, our surgeon, came by to check on Judah and the ultrasound tech let on that he couldn't find the left coronary artery. Because of Judah's abnormal coronary pattern, they weren't in the place he would have normally looked. So I was right in picking up that whatever they were looking at was a big deal, but I was so premature with the anxiety I was feeling. After talking to Dr. Woods the tech found the left coronary and confirmed that everything is looking great and functioning well.
The other thing that really threw me off was finding out that Judah's incision my have a slight infection. I didn't think the color of his dressing looked right but our nurse assured us that it was perfectly normal. When Dr. Woods saw it he immediately pulled the tape up and determined that there is either some fat necrosis happening or than a superficial infection has begun. He cleaned and redressed everything as well as ordered more antibiotics for the next 24 hours. He isn't at all concerned about it, but it could have become a big deal if it hadn't been addressed when it was. This was all happening immediately after the ultrasound was completed and before I had been informed that everything was ok.
Less than 30 minutes after that, Judah was in my arms, free of the CPAP, and sat-ing 100%.
This roller coster of emotions and/or anxiety about the situation is one of those things you never see coming until you in the mist of it.
Another one of the unknowns was how Nehemiah was going to react to the whole situation. Considering the situation he is doing OK but here have been more than a few days in which Matthew and I have hardly seen him. At first, the excitement of having Minnesota family around was a fun distraction for him, but as time has gone on he has had a harder time with our limited time at home and absence of the the rhythms and patterns he was used to. He's been having a rather difficult time going to bed and gets upset easily. We having started to make a schedule that allows either Matthew or I to be around when he is awake to help give him some more stability in this crazy time. We would love prayers for Nehemiah as he adjusts not only to this time that we are away but also for the future when Judah comes home. Also pray that he can be secure that we love him whether we're with him or not.
So in summary praise God Judah is doing well and God help us as we figure out how to love two boys in this crazy time.
Well I think thats it for tonight,
Kirsten (and some Matthew)