Transplant Clinic Day 9/12/16

Today was Emma's monthly transplant clinic day. She hadn't gone to sleep until after midnight so it was hard to wake up early. But we got up bright and early and got ready to go. We put wet/heat packs on her arms in preparation for her blood draw and drew up her 8am meds so we would have them ready. Then we headed to the hospital to check in.

Her blood draw was first. As soon as the phlebotomist put on the blue gloves Emma lost it. The whole thing was traumatizing as usual. She hates the whole experience, not just the poke. The first poke didn't go so well, but it did draw a tiny bit of blood. They were able to get the rest with the second poke which was good considering how hard of a stick she can be. 

Then we checked in for echo and clinic. Since we have to get the blood draw first because of timing and drug levels, she's always traumatized about everything else that happens after the blood draw. So she wasn't happy about echo. She eventually settled down and watched Mickey Mouse after she realized the echo didn't hurt her.  Then it was time for ekg, blood pressure, pulse ox, weight, and height. Emma wanted none of it! She kept signing "all done" and pushing things away from her. Poor baby has had enough, and isn't old enough to understand that all these tests are helping her stay healthy. 

Next we met with a transplant nurse coordinator, transplant pharmacist, and then the transplant Doctor.

Emma's BNP is higher than it should be, which could indicate some heart failure or rejection. But it wasn't high enough to be alarming, it's just something to be monitored. The doctor said that her heart function is not as good as it should be for someone her age. Her blood pressure was also high, so they'll be monitoring that as well. Because of this they'll be doing a cath in January, rather than waiting until Spring like they talked about last month. It's scary to think that something could be wrong, but we are thankful that it's nothing emergent at this time, and we are continuing to trust God with Emma's life. He knew the plan for her life before she was ever born! 

Some good news is that Emma only has two more weeks of her pulmonary hypertension medication and then she will be done with that! One more med down!! We were comparing her current med list of 10 medications and 3 med times to her med list when she first left the hospital of 24 medications and 8 med times and wondering when we ever slept or how we kept up with washing that many syringes!! But more than that, it's just a reminder of how amazing it is that she's alive! 

We are in the process of transitioning to two med times, which is exciting! It will mean no more midnight meds! So she'll get her transplant meds at 9am and 9am, and two other meds at 3pm.

Because the med times changed, she will have to get another blood draw next week to check drug levels, but hopefully it will go smoothly. 

On the way home we stopped to get Chick Fil A. It's Emma's favorite restaurant, so it's becoming our tradition to go there on our way home from the hospital, so she can get a special treat. :) Her favorite part was pushing the rolling highchair back and forth from the table, and dropping little pieces of food between the holes in the table. But she also enjoyed the food! ;)

The drive home went well until the last couple hours when she was just done with being in the car! This picture was taken during one of our stops when she just needed to get out and stretch and look out the window! 

Thank you for your prayers! We would appreciate continued prayers for Emma's health, specifically her heart function and blood pressure. 

Blessings to you all!