Post Surgery Day 1

Ellie had quite an eventful morning. We found out that they detected a heart murmur that they hadn't heard before. They had to sedate Ellie so they could do another echocardiogram to detect what was going on in her heart. The echo determined that she has severe pulmonary hypertension, her left ventricle wasn't working very effectively, the blood flow to the right atrium was so much that it was putting pressure on the newly placed septum which caused the mitral valve to look like it was leaking. I was worried that with a leaky valve, they were thinking they would have to send her back to surgery to get it fixed. Luckily, the valve looks okay, it is everything else that has to settle back down. The hole that the surgeon left in the septum was a really good idea because it allowed some pressure to be relieved. If more pressure needs to be relieved, they will have to make the hole bigger but luckily this can be done through the cath lab and not open heart surgery again.

I believe it is more clear, now that her heart has been corrected, how severe her pulmonary hypertension is. That is Ellie's main problem right now. While she was sedated they replaced her breathing tube to help with her oxygen levels and put her on nitrous oxide that will help relax the lungs. She will be sedated for the next day or two until they can get her pulmonary hypertension more under control. Ellie isn't able to keep her heart rate up on her own so she is being paced with the pacemaker.

It is so hard to keep everything stable. She is on 4-6 medications at any given time, some of which are pain meds, but most are to regulate her blood pressure. While they are effective for one thing, they may complicate another. This was the case with one of the medications that was meant to sedate her but it also lowered her blood pressure.

Last night Ellie had a fever of 40 C which was quite concerning after her surgery. They thought it was too early for any infection and that the fever was a result of her being on the heart bypass machine. They gave her some steroids and it immediately started getting better. Fevers at anytime are a concern with Ellie because she has frequently had really low neutrophil counts and a fever can completely wipe her out. With her low neutrophils, it makes it more difficult to fight off any infection.

Hopefully tomorrow we will see some progress but from the impression I got from the cardiologist, Ellie has a long road ahead of her and will probably be in the hospital longer than we initially expected, especially if she can't pace her own heart and needs to have a pacemaker placed. We have been told by different doctors to expect to be in the hospital anywhere from 4-5 days to a month. We had high expectations yesterday because things were going so well but with today's setback I think the doctors have learned that we need to take things really slowly with Ellie. It will take a while to get her pulmonary hypertension under control and I think we can pretty much expect to bring her home with oxygen and at least another medication so far. They expect her to be in the ICU for maybe a week or even longer if her heart keeps needing to be paced.

We were only able to see Ellie after she had been sedated and she seemed very calm and peaceful and was getting alot of rest which she needs. Along with being sedated, her body has been paralyzed again. It was tough not seeing her open her eyes to look at us, but hopefully she could sense that we were there and feel our love for her.