Thursday, September 4, 2008

Rough Road

I may start dreading these weekly family conferences.

Not because there are any real surprises but because there are often things spoken out loud that, when I'm going feeding to feeding with Simon, I don't keep so much in the front of my mind.

Turns out that while we've been told that there hasn't been "much change" with his Echo cardiograms, that the "much", in fact, has been a trend towards not getting better versus getting better. His heart has slowly been getting more and more dilated and although the ejection fraction has improved a tiny bit the fact that it's getting bigger means that his heart is getting sicker. While this is not an emergency it's not a good sign for complete recovery. It also means that we should begin to prepare for the *possibility* of a transplant.

Dr Rosenfeld has put Jaime and I in touch with Dr Rosenthal at Stanford for a preliminary meeting about transplants. Hunkypants (Rosenfeld) said that we're not that much closer to needing to get on the list but he'd rather we have the information in our heads than not. Really in his mind, a transplant was never completely taken off the table to begin with.

Simon has been gaining weight but they'd like to see him gain more so we're upping his fortifier again and hoping he'll tolerate it. So far so good and he hasn't thrown up the bovine laced breastmilk yet. Holy cow does that stuff stink- it's really no wonder that his farts are even that much more potent and that those videos of father's passing out or wearing gas masks while changing their babies are making so much more sense to me now.

Jaime had to leave shortly after the family conference to get to work and that sucked, so if anyone wants to buy us a winning lottery ticket I wouldn't say no.

It's still so hard to reconcile this amazing little baby that's reaching and grabbing for things with increasing dexterity, talking up a storm, showing preferences for certain books and toys, and bestowing the most amazing smiles, with the test results that say that Simon Fitch-Jenett, medical record # 916792, is in heart failure and after almost 5 weeks has not improved at all and in fact gotten worse.

I don't understand it.

I had a really good cry this morning and now am back to the nap-to-nap rhythm of the day.
The short term goals for the next week are to wean him off the Milrinone, get him up to his maximum dose on Analapril (one of his take home meds), observe him for an additional week and if all that goes with out a hitch, think about sending us home. That's not to say that he's better in any way but that we can at least be at home as we head into the longer term (3-6 month) observation period. That means that if everything is PICTURE PERFECT we can maybe look at going home in 2 weeks. A frightening silver lining around all the transplant talk.
I am heart heavy. Kind of an ironic saying given what's happening to our little boy.

Jaime speaking:
Wow. Leaving Laura after the family meeting at the hospital and going right into a work meeting that was already running was brutal. Coming back to the hospital this evening was also really hard b/c Simon is definitely breathing harder. It's so scary and feels like we're back to square 1 in some ways. I just have flashbacks of holding him that night while he was panting and gasping and staring me right in the eyes, looking terrified and there wasn't anything I could do.

I had another episode like that tonight a little when he couldn't breathe b/c he had a bunch of snot and needed to be suctioned. It was a terrible cycle that he couldn't breathe through his nose so he couldn't go to sleep with his pacifier, which upset him more, which made it harder to breathe, which make me freak out. Laura wasn't in the room (she was grabbing a few bites of dinner in the conference room down the hall) and I hadn't been with him all day so I wasn't sure if he was breathing a lot harder than before or just a little. I was feeling a little panicky and our nurse (a float we'd never had) wasn't near by. I kept saying I was worried about his breathing and wondering out loud if we should get a doctor and she kept saying he was fine and I wanted to punch her. He hadn't breathed that hard since we first came in. I'm NOT into having new nurses at this point.

I finally had to put him down and got her to suction his nose. which pissed him off in the extreme and made me wonder if he was going to go off the charts and then he settled down. I was shaking almost the whole time.

I don't realize how much I'm lulled into a somewhat false sense of security and peace when he's acting like a normal baby. Maybe that's just good coping- I'm in the moment. When he's good, I'm good and not really worried. When he's not doing so well, I'm vigilant. I just know that vigilance will be a double edged sword if/when we go home.

Laura writes a few hours later:
Theresa, Shimmy's nurse tonight, was talking to us about her children, the youngest of which was born just a few weeks before Simon. I asked to try her stethoscope as it was one of the ones that was recommended to us for when we go home (we have to listen and count heart beats before administering one of his drugs). The free one that they gave us is kind of crappy and we were told that investing in a hospital grade one for our situation would be more than worth it). When I commented to Jaime that she had the exact one that had been recommended to us, Theresa said "here, you try it and then you keep it. I have more at home".
She just gifted us with a very expensive piece of equipment. Top of the line, perfectly suited to little Shimmy. We also learned that she has more milk than Berkeley Farms and is more than likely supplying Simon with some of his banked breastmilk.
I don't quite understand it, this whole situation. The hell of it and then the moments of graciousness and beauty. It's all more than a little overwhelming, confusing, horrific, and beautiful.


Anonymous said...

My thoughts are constantly on your family as i continually check your blog. I am hoping Simon will be coming home soon. You two inspire and amaze me!


Annie said...

I am speechless with this post and my heart aches for you three. Yesterday morning things seemed so good. This is my big super strong virtual hug to you both and all the positive meta I can muster - Anne