"Your son is having congestive heart failure"
That's what the cardiologist came in and told me today. He came into the room, and I was wondering why the heck he was there because his heart should be fine after the surgery, and he stuttered for about a minute trying to tell me something he didn't want to tell me. Then he says your son is having heart failure. There is a significant amount of blood flowing from the right side of his heart to the left. At this point I'm in a little bit of shoke and am having a hard time understanding what he is trying to tell me. I understand what a VSD and an ASD is but he wasn't saying that, well he was but he wasn't. A VSD is when there is a hole in the bottom chamber of the heart that allows blood to flow in between an ASD is the same thing just in the top chamber. So esentially he's trying to say he has a VSD but instead he's explaining what one is instead of telling me the name of it. The problem is that he is a Dr that doesn't know us and doesn't understand that we know what things are and what's going on. Last week Dr Dabal (the baby's heart surgeon, yes that is different then a cardiologist, go figure) tells us when they first did the surgery there was no leak and everything was fine but shortly afterwards they noticed there was a small hole. Now sometimes the heart can be swollen after surgery and you won't see the hole but since he started recovering they started to see it. Fortunatly, it was not big and thought that there was a 90% chance that it would close on it's own and a 10% chance they would have to close it. I started noticing this week, after his stomach surgery and him still being on a ventilator after the surgery, that he was getting really mad and turning blue and his saturation levels were dropping. That is the same thing that would happen before his heart repair because of the VSD. So I started bringing up the fact that I thought something was happening with his heart and they kept, as you've heard me say a thosand times because they do it everytime, that it was normal and blah blah blah. I finally decided I was going to call the heart surgeon in and ask him to check on that whole because I personally felt that it had gotten larger because he was showing the same symptoms, but then I talked myself out of it saying I'm sure they are checking on that. Ok back to the story at hand, I ask the cardiologist (not the surgeon) how they knew that this was happening. He tells me they did an ECO yesterday. At that point I was furious!!! I had been on their butts all week to make sure they were keeping me up to date. I knew they were going to do an ECO of his chest because they thought they saw some fluid Saturday and told them to make sure they let me know when it's done and what it says. I called every 3 hours no matter the time so they would make sure to tell me everything. It didn't matter how much I called they would still forget to tell me stuff. I went up to the hospital at 2 pm on Sunday and I didn't see anyone do anything. So I tell him I should of been told when that they did the ECO and they should have told me what was going on. He said they didn't want to tell me only half of what they know and I told him you are telling me now what you knew yesterday so there is no difference. So he leaves and I'm crying none stop it figures we never get a break and things never seem to get better for us. Then Dr Dabal (Sam's heart surgeon) comes in and tells us that he just found out this morning. He was VERY mad about it, he said he was depressed. I told him I should of been told immediatly and he said he didn't even know and when he asked them why they didn't tell him they said....."Because we didn't want to ruin your Sunday" (!) I said your kidding, your his surgeon and they didn't tell you your paitent was having heart failure because they didn't want to ruin your Sunday!! He said, I was here anyway I don't understand why they didn't just tell me. So to make this very long story short, tomorrow they are doing a heart catheter to see if he will need immediate surgery or if this is something they can control with medicine until he grows more. Dr Dabal said if they patch and or the stiches didn't hold the first time they probably wouldn't hold the second time. The tissue was very week because of his nutrition problem. He said the worse case is he will need immediate surgery to repair it but there was hope and he did think he would be able to try some other kinds of sutures to hold it but he really really really didn't want to do surgery so soon. Sometimes during heart catheterzation (is that even a word?) they can close those holes but not usually with Sam's kind of VSD. He said if they could it would be perfect because then he would not need surgery. Anyway, that's what's going on, and as most of you can imagine this is very diffucult for us.
Jennie and Sam (and little Sam) Gibson
Jennielee-chan Community Member 
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