I call the PICU as soon as I wake up. They tell me Peanut is still getting worse and they don't know why. I shake Hubby awake and tell him to get his stuff together, we're leaving.
The ride is long. I worry that something is happening that I don't know about and that I am on my way and it will be too late by the time we get there.
We can't get there fast enough.
When we do arrive, they explain in more detail what happened. He had another breathing episode, but worse. He lost color, his stats and oxygen levels were low, and he seemed to be having a lot of trouble breathing. He also isn't peeing like normal. They gave him a second blood transfusion because he had a higher then normal acid levels. He is still on the ventilator when we get there but they had to raise the pressure, and he has a chest tube. We find out, when they put the ventilator in, the pressure must have been too high and it popped a hole in his lung. The air then went out into his chest cavity so they had to insert the chest tube to get the air out. He has been put back on meds that they had weaned him off of weeks ago. He basically looks like he did when he first came out of surgery.
I feel so bad. I feel like if I had stayed, he wouldn't have gotten worse. I feel like a selfish person for leaving him just to get a break. My son can't get a break. He is stuck here, in the hospital unable to leave yet he keeps fighting.
I should have stayed.
There isn't much we can do, so we leave to get some dinner. When we get back, Dr. Rh is there to give us his opinion of what is happening.
He tells us he will most likely need another surgery but they aren't going to do it until they find out why he is sick. He says the xray of his lungs looks like he has pneumonia but the tests are coming back negative. His echo also shows that the muscle of his left ventricle has gotten bigger. Since the muscle has gotten bigger, the cavity inside the left ventricle has gotten smaller. This is making his heart work a lot harder to pump, and is not helping with his breathing. They want to do a heart catheterization so that they can measure the pressure levels in his heart to try and explain what is going on. They also need to get an IV in his leg. They haven't been able to find his femoral artery yet, but they need to find it in order to do the heart cath.
He can't tell us much more, he can only give the few details that he knows for sure are true.
We have no choice but to wait.
As I listen to them name off Peanut's meds during rounds, I feel like we've gone back in time.
Back to when he first got out of surgery and it took two minutes to name off all his meds. This is no little setback, this is serious.
Rounds come with no change. They are not going to do the heart cath till the end of the week, so they will continue monitoring and management. His cultures for infection are still coming back negative but they want to continue his antibiotics just in case.
Later that evening, Dr. P stops by to talk.
He tells me that from what he can see on the echo, Peanut's VSDs have gotten smaller.
I start to smile, then he says:
"Thats not necessarily a good thing."
He explains that first: Peanut does not have double outlet right ventricle. His aorta comes off of his left ventricle like it's supposed to. Second: the holes that they had seen earlier in his lower heart have gotten smaller. The lowest one is very small and is a muscular VSD, which should close on its one. The second VSD, may be one of two kinds. The first kind, a sub aortic left ventricle, may mean that he will have to have what is called a Fontane Surgery. It is "the bad kind", a three part surgery, that he may not live through. Or it could be a perimembranous VSD, which if it keeps closing could be causing the muscle to get bigger.
He isn't going to know until he does the heart cath.
I'm really starting to think this heart cath is a big deal.
I ask all kinds of questions. Dr. P sits with me, drawing a picture as he talks, to answer my questions. I cannot stress how very awesome this is. To have a cardiologist sit with you, for almost 30 minutes, sketching and talking to help you understand what is wrong with your child. The doctors here amaze me everyday with their understanding and patience.
I go back to the McDonald house feeling very much smarter then before and confident that the doctors will be able to find out what is wrong and fix it.
I sleep in peace.