The general consensus seems to be that I look really really good for someone who has so many things wrong with me. I’ve been eating like a champ this week and more importantly, eating like a champ from a bottle. My OT Lisa, says that it’s safe for me to try 3 meals a day from a bottle and at each of them I’m getting more and more confident about how I eat and I’m taking around 60mL each time. Impressive, if I do say so myself, for a girl who couldn’t even suck a few weeks ago.
The rest of my OT exercise is coming along really well too! Lisa is very impressed with how strong my neck muscles are getting again and how strong my right arm is now, especially since it was just last week that it was laying limp beside me. It seems that at some point this week, I not only remembered that it was there, I decided to start using it all of the time! I’m sucking my thumb again and grasping things (like the mom’s hands) and I’m even holding on to a set of jingle bells and moving them all around so they make beautiful music. We won’t talk about how I often hit myself in the face with the jingle bells because, well, that’s just embarrassing. My legs still need some work – I move them a lot when I’m angry or frustrated, but they don’t move around a lot more than that. I also need to work more on my tummy time, because I really really hate it, but it seems that no one is doing anything to really make me cry these days.
On Monday, I had another Echo done so that the doctors could look at my heart and see how the blood clot was doing. About an hour after I got back to my room, my cardiologist came upstairs to “see me with her own eyes” (her wording, not mine). It seems that after all of that worrying we had done since Friday, the Echo showed that my blood clot was gone. They didn’t know for sure where it seemed to be – either it had been broken down by the Heparin that they started or it had dislodged and passed into my lungs but in small enough pieces that it didn’t cause any problems. My cardiologist was shocked and said that while this was the absolute best case scenario, she wasn’t expecting it at all because the clot was quite big in the pictures and they were pretty certain that it was going to cause way more problems. She told the mom’s that they were still going to do the MRI that they had scheduled for Tuesday, just so they could see if it was in my lungs and to look at my brain to make sure there wasn’t any bleeding (because of my brain injury, Heparin can make bleeding in my brain more likely).
I had the MRI on Tuesday and that was a long day. After it was all done, I really didn’t want to sleep and so I stayed up really late and even pulled out my Ng tube (I told you my hands were getting better!) just so that I could stay up late with Mama C. The mom’s didn’t hear anything about the MRI results though until Wednesday morning. That’s when my cardiologist came upstairs very quickly to let the mom’s know that they had decided to move me back down to the cardiac floor (my home!). During the MRI, they were able to see my pulmonary veins (the one’s I talk about here…. http://giggleandhugs.wordpress.com/2011/06/18/you-take-the-good-you-take-the-bad/). It turns out that my surgeon tried to open up the veins a bit during my AVSD repair and they were hoping that this would buy me 6 months of time before it became an issue again. In the end, that work only bought them 6 weeks of time. On my left side, the lower pulmonary vein is completely dead and the upper one only has a tiny bit of blood flowing through it (about 10% of all the blood – my right side is filtering through the other 90%! This isn’t fair to ask my right lung, especially without a lot of notice, so the hope is that they can fix my veins for a long enough time to allow my right lung to learn how to deal with all of that blood working it’s way through.
So, tomorrow morning at 9am, they’re going to come and take me to the catheter lab, where they will insert a catheter which will snake it’s way down to my vein and use a balloon and a stent to open it back up. They don’t know how long this will last and they can’t even say what they would do for a “typical” child – because apparently this is incredibly incredibly rare (2 in every 10 thousand!) and so they take each case at with their own set of challenges. The plan is to avoid a heart-lung transplant, which could be an option but only in a worst-case scenario. Apparently the survival rate for infants/babies and transplants is pretty low, so we want to make sure, that if we get to the point where the doctor’s think a heart-lung transplant is my only option, I’m as big and strong and healthy as I can possibly be!