Monday, March 20, 2006

I'll start this post with an interesting email I got today; It said just
"Call out Gouranga be happy!
Gouranga Gouranga Gouranga...
That which brings the highest happiness"
And nothing else. I don't know the sender, or how they got my email address. Nor did I have any clue what it was all about. So I did a search on Gouranga.

I was amused somehow, but extremely happy that it wasn't the longer chain letter version...

Anyway, then I decide to do a blog search on the sender, whose name I didn't recognize. Apparently "Neateye" has made some rounds in the blogosphere...

Well, regardless, I think I'll "call out Gouranga" for a while. I need some easy-to-come-by happiness today. "Why?" you ask... Well let me tell you:

This morning, like I said, we got a wake-up call from the hospital saying that they needed to take Nova back to the operating room in reference to his incision. Well, you can't exactly say no, and I'm afraid that I wasn't entirely sure of even why they needed to go in, or what they needed to do. All I knew for sure was that there was an opening in the incision that needed to be addressed because it was seeping.

I don't want to go into a huge detailed description, but basically, when they did the surgery, the went through the skin, the muscle, and the membrane that encloses the intestines. The body naturally sends extra fluid (via the lymphatic system) to any area that has been damaged. This fluid was accumulating between the muscle and the skin and the pressure it created caused the incision to open, and the fluid was then leaking out. The accumulation of fluid isn't normal, and so they wanted to see what was going on in there, drain the fluid, and repair the incision.

Basically, from what I understand, they opened him back up, cleaned the area, drained the fluid, and resutured the membrane and the muscle but not the skin. Then they put on this weird spongelike bandage which is covered by a sheet of clear tape-ish stuff that has a tube attached to it. Basically, it creates an air tight seal, and the fluid is now being suctioned off of the wound.

It sounds more complicated and serious than it is, but it does put off all conversation (for the umpteenth time) about extubation and/or heart catheterization - at least until NEXT WEEK. Nova has been intubated for 4 weeks today, and I'm really concerned about how hard it will be to get him off the vent. He was showing signs of a fever (though not actually running one yet) and needed some blood products to up his blood volume, and off the lasix - completely knocked out on narcotics, off the feedings, back on the dopamine, and recatheterized.

Despite all that, he was stable, and all his numbers looked pretty good. It just sort of puts us back at square one with his recovery, because now he has to spend a few days just recuperating, and they have to keep him more sedated for the pain. They had just started to really wean him off the fentanyl and versed from the last surgery, and now it's all back up again. They had begun to wean him off the vent pressures, now that's back up again.

The poor guy can't catch a break. And I'm exasperated beyond words. Part of me wants to be angry at the doctors, because that part of me wants to believe that someone is doing something wrong. But the truth is, this shit just happens. His body was so overtaxed from the heart surgery and the possible heart/lung issues that still have to be addressed that it doesn't have the energy to heal or maintain itself the way it normally would - so other things start to go wrong.

I can't take anything else going wrong. I need things to start going right. And damn it, I know that the things that have happened could have been worse, that we're lucky to have nurses who are so caring and vigilant, but damn, you know? He's been through so much, and it's just one thing after another, and he's been through enough.

And to top it off, we got to the hospital and immediately checked into the waiting room. There was some new chick I've never seen before, so I made sure we were on the master list, that she had our names, and we got a beeper so if we needed to leave the waiting room, they could get ahold of us if they needed to. This is their system, and it normally works very very well. So we sat a while, and decided we'd get some breakfast just before 10. We ate and came back and sat and waited and waited and waited... at 11:50 I went up to ask if they'd heard anything. By that time, I'm thinking he'd been in an awful long time for what they said was a simple procedure. There was a crowd at the desk, so I just called upstairs and asked Nova's nurse whether he was out yet.
"Oh, yes ma'am, he's been back here since about 10 o'clock. We called the waiting rooms on the 3rd floor, the 6th floor, even the surgeon went down looking for you. We expected you to be in here at 10!"


When I asked at the desk, the new chick asked me who I was, who my patient was (hullo!?!?!) and what doctor would have been looking for me. I told them that Dr. Bambini had said he'd been to the waiting room looking for me, and that the nurse had called down... so why wasn't I paged?

According to her, no one ever called or came in asking for me. Bullshit. Doctors and nurses don't lie about looking for the family, and they ALWAYS call you up as soon as the patient is out of recovery and back in their bed. For God's sake, Dr. Bambini even called my house looking for me and talked to my mother, so I KNOW that he tried to find me.

So even though Nova was done with surgery before 10, and I could have SEEN him at 10, we didn't see him until noon. Talk about pissed, oh man was I pissed. Hell, I'm STILL pissed.

posted by Erin @ 8:59 PM   1 comments

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Donovan "Nova" LeClair

Monroe, North Carolina
Nova was our second child to be born with congenital heart defects. We lost our daughter at 12 days after open heart surgery in 2001. Nova was born 12/2/05, with Pulmonary Atresia with VSD. He lived 6 weeks after surgery, and passed away on April 6th, 2006. This blog is his story, and the on-going story of how our family is dealing with the loss of our beautiful boy.
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