So I got tired of writing everything down, I guess. Not having written since July and lots has happened. So here is a quick review:
Home:
We went home and everything was progressing great. Her heart function was showing minor improvement every echo. The docs were happy, we were happy and Molly was happy. She started gaining weight normally too, which was the first time EVER. So all yay. Then at the end of August...
Hospitalization #4
Molly stopped eating suddenly one day and just seemed off all around. We took her to the pediatrician (we hoped that one of these times it would be something normal) who noticed her breathing harder than normal. So he sent us to her local cardiologist who did an echo and saw that things were the same. He sent the echo to UVA just incase. We then got a call from UVA to come in for an appointment in 2 days. Uh oh... So they found that her heart function started decreasing and decided they needed to adjust her medications. We were at UVA for 8 days so they could make sure she tolerated the medicine fine (which she did). This was when we were told that she was "accidentally" taken off a pretty important medication. Great! I wonder why her heart was getting worse. Fuck.
And this is the trip that marked a big change in how the doctors are viewing Molly's condition. More on that to come.
Home:
We went back to life at home with no changes except Molly got back to eating well and she just wasn't growing as much anymore. In fact her weight gain started slowing before the hospitalization. My hunch is that she was slowly declining since being taken off the medication. Her weight gain reflected this. The docs wanted to do a cardiac catheterization to measure pressures in her heart. With her last blip, they wanted to make sure her heart wasn't worse than they thought it was. It should have been an outpatient procedure, but...
Hospitalization #5
Her second hospitalization was just 1 day. I like to think we're getting shorter and shorter with longer and longer in between, but we'll see. She had a cardiac catheterization to measure pressures in her heart and had a bad reaction to the anesthesia. Her blood pressure dropped really low. But she recovered immediately after the stuff wore off (with some help from dopamine in the meantime). But because she's Molly they sent her right to the ICU for observation. Chelsea, the infant educator, came by to say hi. She said that she saw Molly's name written on the board to go to the general pediatric floor (which was already reserved for Molly before the cath even started for observation). She also said when she saw her name was erased from that board that she would have thought any other kid would have gone home. But Molly? She knew to come to the ICU to find us. Haha?
Home:
So we're back home again. The catheterization numbers showed mildly elevated levels, which was all to be expected given her poorly functioning heart. So phew. But remember how I said above that the docs shifted their views on us? Well, that shift is that they are recommending we list Molly for heart transplant. We had an appointment mid-August and the docs were literally doing little dances because her echo and all looked good. Then when she took the step backwards (2 weeks later), all of a sudden they shifted to Molly being completely fragile and needing a heart transplant. Their reasons are because she took this step backwards (which they admitted was most likely a medication screw up on their part, but suddenly they no longer took that into consideration/were behind their initial statement) AND because she wasn't growing as well anymore (again...medications AND nutrition...more on that later).
Brian and I think they made up their minds about transplant when her function went backwards (but then went back to normal within hours of being given the right medications, again they don't really care about this now). Dr Schneider said he would talk to his friend who runs the UCLA Heart Transplant to get her opinion and also float it to the docs at UVA. All said they agreed with listing her status 2 for transplant. Status 2 means we get to stay home and she is on the list but not as a priority. Status 1 means she has to be hospitalized while waiting and she would be priority.
I asked Dr S what would change his mind about transplant and he said of everything the largest factor was that she is not growing as she should. OK given. She is tiny. She's 8 months and still only 12lbs. However in the midst of all this I realized the second big mistake, which was UVA nutrition telling us to actually feed her less than we should have been. To be honest, I should have known. I should have done the math instead of just following their instructions. But didn't and molly wasn't getting what she needed. So we instituted a more agressive nutrition plan. The feeding tube is back in because Molly just cant eat all that she needs to compensate for her heart function. So she eats during the day and we supplement with more calories through the tube at night.
Dr S said if she would start gaining .5 to 1 oz avg per day, he would change his mind about transplant. Well guess what? Molly is now getting the calories her body needs and she's gaining about 1 oz a day. Surprise, fucking surprise!
So we just went back to UVA for a follow-up. They got the news about her weight gain, and didn't really care. Yup. Didn't care. In their minds...full speed ahead for transplant. They said it didn't count because she can't eat all that she needs on her own (aka needs the tube).
So now we're in the process of getting second opinions and trying to find someone who thinks transplant now is premature (like we do). We're going to be getting opinions from CHOP (Philadelphia) and NYU (where the leading heart block researcher is). Hopefully they can give us some hope. In the meantime, we just need to make sure Molly doesn't take any more steps backwards. Which brings us to:
Soooooo, this is the part where we break up with you. Yes, you. It's not you. It's us. Well, it's Molly. One thing that the doctors have been hammering into us is that Molly is so fragile that any illness could be detrimental to her. Her heart is so weak that it just might not be able to withstand something like the flu or another infection/virus. Well going into winter, this means that we decided to take Molly out of daycare (our beloved Kathy is on hiatus) and I had to give up my classes this and next semester to stay at home with her. So the break up...we also have to limit her contact with people (aka germ carriers). So we're on a break from visitors and visiting until the sick season is over (Molly says, "See you in May!"). Skype will be alive and kicking, though, and we'd love to see you there :)
Over the next few weeks, we'll be getting all these opinions and I'll be better about more regular updates.
