Did you know that a person who has a fontan most likely will experience some damage to their liver? Shouldn't that be something that is discussed with the parent beforehand? I honestly didn't realize that the fontan could cause liver issues. I knew we were checking her liver function once a month because of the bosentan she is taking for her pulmonary hypertension. So it seems that there is some sort of mild concern over the way her liver feels...it feels worse than the last visit. I think he was also concerned that Friday morning, before our follow up appointment, Gracie threw up four times, one in the car on the way to the appointment. She's better now and has a lot of energy. She went to dance class and bowled Saturday at a friend's birthday party. She enjoyed the bowling but enjoyed the popcorn even more. She is still pink but I have that kind of waiting for the shoe to drop feeling since Friday when we saw the cardiologist. The whole liver thing has kind of put me into a quiver. If it's not one thing, it's another. But no matter what the hurdle is, we can overcome, as we always do...with patience and prayer. I watch her and think to myself how amazing she is, not because she is my daughter but because she is out there taking risks left and right and not showing all the major stuff she has gone through. My girl has some serious gumption.
Monday, April 23, 2012
Monday, April 16, 2012
The heart cath was a tough day. It was super long. They didn't get started until 10 a.m. (we had been there since 7a.m.) Gracie was pretty anxious as we all were. Initially we were told it would be like 3 hours. We got one update like 11ish. Then around 12:30, 1ish, the nurse came out and said he was still gathering data. Okay, I knew then and there that something wasn't right. Dr. C is a cautious guy but if he could have closed it after the first try, he would have. We all knew this was pretty much our last effort before something else, which I don't want to talk about for a long, long time (the "t" word). Thankfully, our friend, who is a picu doctor, came by, and found out what was going on and told us. The first effort didn't work. The fontan function dropped drastically and he wouldn't be able to close. Dr. C and another cardiologist put their heads together and brainstormed why and decided it was lack of volume (due to not eating or drinking and being under anesthesia for a significant amount of time)...they added volume with calcium and waited before attempting the mimic closure of the fenestration (pop-off valve) on the fontan. After some time, they tried it again and the function was within normal range. He did it again and the same results. So, Dr. C. closed the fenestration. She pinked up. Her oxygen saturation levels were in the 90s. Because she was under anesthesia for so long (like until 3ish), they had her recover in PICU and we spent the night there. Gracie was like a rock star with all of our favorite nurses coming by and seeing her, especially sweet Katie O'Dear. We got released the next morning from the hospital and Gracie is still doing well. She's pink and has oxygen saturation levels around 90-94! She went from 79 to 94 in one day! Amazing!
Posted by Jamie at 2:16 PM
Tuesday, April 03, 2012
I turned 40 on Friday. It came and went without a whole lot of hoopla. It was because of me that I didn't want anyone to fuss. I was never afraid of turning 40 because frankly there is no going over the hill...life is always about ups and downs in the hills of life. I actually think as I am getting older, I am getting wiser, despite sleep deprivation.
The day before I tuarned 40 I got some news that I wasn't ready to hear. Gracie had a blue spell earlier in the week...enough of turning blue and breathing funny that her teacher called, which is VERY rare. I, of course, was out of pocket being part of testing so I missed the calls. She was okay but it was alarming for me. We saw our cardiologist Thursday and we had a long discussion about my girl...she struggles a lot more than before with her stamina...when she gets sick (which she was for most of February and didn't get over it until spring break) it really takes its toll, especially in her oxygen saturation levels...she is overall a lot more bluer than before. The decision was made to do a heart catherization and try to close up the fenestration. The scary part is that if it cannot be closed due to high pulmonary pressures (which is what she had as a result of the fontan), most likely we will be facing heart transplanation. I knew the T word was a possibility in the far off future, not just this close. I am still dealing with that shock. I think I realized how concerned he was when he called the cath cardiologist, discussed my girl right then and there and then called the scheduling nurse to set up the appointment for ASAP...and we weren't able to register for dance class in the summer. I thought to myself, "Holy cow! I can't believe we are back on this roller coaster ride, yet again." I pray that they are able to successfully close the fenestration and that there will be no effusion as a result. I pray that she gets pinker and her o2 sats increase. I have to try to keep a positive mind and be strong for her so that she won't be scared. She is a miracle girl. She continually surprises me. She has a strong spirit and she really is my super girl.
Posted by Jamie at 11:00 AM