Sunday, February 27, 2011
Sorry this post is a little late. Lillian had her sedated ECHO last week, something we had been trying for almost two weeks to get. The results of this are good; her aortic arch is wide open and there's no sign of the blockage returning. We do see that the SANO shunt is narrowing, showing that Lillian is outgrowing it. At some point it might get too narrow; in that situation we could either do a cath to balloon it or do another surgery to replace it entirely with a bigger one. Obviously we would probably do the cath option first.
Other than the ECHO it was a relatively quiet week. Lillian is continuing to fight eating, and is down to at most 20 to 40 mL by mouth a day. The rest we have to gravity bolus. It's disappointing to lose ground on this as this was one of our target areas to work on while waiting for transplant, but at least Lillian is still relatively stable.
The wait continues...
Monday, February 21, 2011
Today was also the 90th day that we've been listed.
Monday, February 14, 2011
We also found out that Lillian almost got a heart this weekend. I'm not entirely sure how to feel about it as we really want a heart for Lillian, but this also would have been a mismatched heart. This heart was offered and rejected by the child at the top of the list (more accurately by the doctors for the child at the top of list), and was offered to (and accepted by) another child on the list in California. We found out from our heart doctor that if this child had rejected the heart, it would have come to Lillian next. This means that Lillian is now basically 2nd on the national list (at least as far as I understand it) and will hopefully get a heart soon.
As a closing note, another CHD mother made a slideshow for a bunch of HLHS kids, and Lillian was one of the babies that she asked to include. I've included the video below.
Sunday, February 13, 2011
Some interesting things have been happening today and the last few as well. Lillian has been losing interest in eating lately; now she likes to fight us every time we try to feed her. And today after eating 20mLs we had to bolus the rest and we tried doing a drawback on the feeding tube to get any air out her stomach and instead we got some bright yellow liquid, which is not what we were expecting. The doctors don't seem too worried about it at the moment, but Andrew and I have noticed that she seems extremely lethargic today and is much fussier than normal. We're a little worried because these mirror the initial heart failure symptoms. And no one can explain the yellow liquid in her stomach. Normally any formula residuals don't change color so we don't think it is that, and it isn't nec either as that would produce a black or red liquid. We'll just have to wait and see for now.
Saturday, February 12, 2011
Sorry about the lack of updates again, hopefully the mobile app means I can post a little more often. Anyways, Lillian is still waiting for her transplant but doing relatively well considering. We are remind daily at Children's that no matter how dire your situation there is always someone worse off. It's not an encouraging thought but it teaches us to be grateful for the health Lillian does have. We're always thankful that Lillian is relatively normal in terms of her development so that once we get a heart we can hopefully move on with our lives. She has been sitting up on her own, something the nurses tell us kids generally don't do in the hospital. I'm a little worried about the next stage of crawling/walking with the PICC line in her leg, but she's done well so far.
Lillian has been going up and down a bit recently in her health, but relatively minorly. She lost six ounces about a week and a half ago, almost enough to send her back to the CICU to get her Milrinone increased, but we've avoided that scenario for now. I'm grateful for that too as an increase in Milrinone does mean that we're starting the decline as she outgrows her heart. The weight loss was mainly related to Lillian's frequent emisis and lack of digestion but we've been able to counter that so far by increasing her calories in certain feeds and checking her residuals to try and reduce overloading her and making her spit up. I am worried about the lack of digestion, but it's not unexpected either. As she gets bigger she will begin to start outgrowing her heart and a consequence of that is less blood to the stomach and thus poor digestion. We still have many options to manage her heart failure and keep her running while waiting for a heart including putting her back on continuous feeds or TPN, increasing Milrinone or even putting her on a Berlin heart if need be. We would just like to avoid doing them as long as possible as they either set us back in terms of development (learning to eat again) or substantially reduces her quality of life (the Berlin heart requires you to be in the CICU and likely paralyzed).
But again, she's doing ok at the moment, and even though we're a couple more lost ounces from the CICU, we've avoided it for now and she would be back fairly quickly if she went.