Elise likes sitting more upright in her new car seat. Notice the no oxygen!
Here is her travel "crib" in the hotel the night before her cath. She slept surprisingly well in it.
Saying "good-bye" before going to the cath lab.
This is after the cath upon her returning to her room. She had to lay flat for 4 hours!
Elise's day of cardiac cath didn't go smoothly, but the results really made up for it. Compared to the first cath she had in August, her average pulmonary pressures were about half. This means that she has had a significant improvement from development of her pulmonary vessels and dilation with the Flolan. We don't know how much of the improvement in her pulmonary pressures are due to the Flolan, but we think this is encouraging as to the possibility of her coming off it long-term (years). Babies develop as many as 15 times the air sacs from birth to age 18 months. This is like dropping the pressure in a water hose by poking several holes in it. We hope that the improvement is steady and we can see another remarkable change in future catheterizations. She was scheduled to be the first case, but it ended up being about 5pm when she was cathed. So we drove home late and got home about 1. We are glad to get her back home, we're settling her in, and trying her off oxygen again. Love you all,Jason
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.So that's Jason's version of the trip and here's mine. We have been able to keep her off oxygen since Monday, so our trip was a lot easier. Although we still brought all our oxygen just in case. Her appts on Tues went really well. The surgeon was happy with how her Gtube looked and won't need to see us again unless we have problems. Next was her cardiology pre-admit appt where they did an EKG and chest xray. They where pretty stoked to see her off oxygen. When they told us we were being moved from the first case of the day to noon, we weren't too happy, but we understood there are sick babies needing the procedure more than Elise. We then took Elise out to lunch at our favorite pizza place in STL, and then settled into our hotel. My friend Leslie gave us that travel crib in the picture, and this was the first time we have been able to use it. And Elise LOVED it. Jason kept calling it her box, but she liked snuggling up in it. Our hotel had an Applebee's restaurant in it, so we met our friends Zac and Miranda for dinner. Elise go to sit in a highchair, and was eavesdropping on everyone's conversation around us. She was flirting with every table around us, really putting on a show. It was our first overnight trip out as a family.
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.We were able to piddle around our room Wed a.m. since we didn't have to be at the hospital until 11:30, which was nice. They took Elise into the cath lab at 12:50 and told us they would update us again at 2:30. Well at 2:20 the doctor came in to tell us that they weren't able to sedate Elise enough with IV medicines to do the procedure and that she has been pretty upset, which caused her oxygen saturation to drop, and that they were going to have to get anesthesia involved now. So for 1 1/2 hours Elise had been back there upset, and the whole time we thought she was almost done. This made Jason and I very nervous, and we discussed with the doctors calling off the whole procedure and coming back another day. But they reassured us that the procedure was very necessary, and that she was fine and had been sleeping in a nurse's arms for awhile.
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So they ended up finally starting her procedure at 3pm and had to intubate her. We didn't get to see her until 6:30pm when she came up from recovery. They initially wanted us to stay the night since she had to stay flat for 4 hours and that put us at 9:15pm, but she was very alert and acting like herself, so they ok'd for us to go home. So we ended up getting in after 1am, but all of us were happy to be home. She did have to come home on some oxygen, but we were able to take her off of it this afternoon.
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.The results of the cath were better than the doctors had expected. I'll try to make it simple. Back in august her main pressures were 50, this time they were 25. Which is the high side of normal for someone her age. The doctor used the words, "remarkably better." It was great to hear him have such good news for us. So now the plan is to keep her flolan at the current dose and stop increasing each week. This will essentially let her grow out of today's dose, and we'll see if her oxygen need goes up because of it. If not, then he said we could consider a slow wean off the flolan that would take quite a long time. So like Jason said, good news in the end. I'll post again on Monday, hope you all have a great week. I know we are. Love you all, Kristin
