Monday, July 9, 2018

My delayed update- Surgery to Now

Sleeping is her peace and comfort right now
So I have been really bad at posting an update. I forgot what it was like to sit in a waiting room for so long and wait for word. From the time she left the room and returned, she was gone for nine and a half hours. Nigro ended up doing the Ross procedure. His words to us, " The right side of her heart was such a mess, I can't even begin to describe what we walked into." He said even once he pulled her mechanical valve out, the valve still needed to be cleaned up and receded. There was a 25mm cadaver valve put in on pulmonary side and there is minimal leaking, which he told us is to be expected. All in all, the surgery was a success. 

Now lets step into recovery. I asked this question in my Ross support group, because when Lily was finally awake, she was dripping sweat, only once having an actual fever.The question was, is it common for patients to become overheated from circulation change. The response, it is very common for patients who have the Ross, to get overheated very easily. That was only the beginning though, next was the partial collapse of her left lung, from all the excess fluid hanging around. That was why we got her up and walking 24 hours after surgery. She only had 1 chest drainage tube, vs the 3 she usually has, and it wasn't helping her move fluid. Next on the curve ball list, Lily ended up with heart block in the first degree. (Frist-degree atrioventricular block)  So I took the following excerpt from the previous link, because it explains it better than I can. 

First Degree AV Block

First degree AV block is simply an increase in the time it takes for the impulse from the atrium to reach the ventricles. In a normal heart rhythm, the PR interval is in the range of .12 to .20 seconds. In first degree AV block, that interval will exceed .20 seconds and can be as long as .50 seconds in extreme examples. The cause for this delay lies in the AV node. The AV node is suppose to cause a certain amount of delay in the impulse reaching the ventricles to allow for the ventricles to fill with blood, but in first degree AV block, this delay is increased.
Doing crafts in the craft room
They worked quickly to address this, by stopping certain meds, checking her blood gasses and seeing what she needed and what needed to be decreased. It was all taken care of quickly, and 24 hours later, it was it never happened. And then tachycardia creeped in and our missed beats reappeared. Her tachycardia never got above 180's until today and then we hit the 260's. We are currently waiting on her EKG results, which is being done now. Which will also hopefully explain her missed beats. She has 1 to 2 second pauses between beats every few minutes. Lily's heart has always kept us on our toes, which in my language, has always stressed me out. 
In the child life room, the one room in the hospital that brings her joy.

I need to email her main cardiologist and get him in on the loop, I know surgery day, Dr. Nigro was texting him about her and how everything went. But since then, I am not sure if they have kept him up to date on her progress. I am sure he would be able to offer advice and guidance when it comes to Lily, as he has been taking care of her since the day she was born. This momma's nerves are shot, I am done doing the hospital thing, but when it comes to Lily, I will continue to do whatever she needs of me. My beautiful Warrior Princess. 

1 comment:

cici said...

Hi Lily

You look really good in these photos. Such a beautiful,sweet, strong girl. I pray for nothing but the best for you and your Mom.
Keep smiling! xo