Madison's journey continues to be successful as she just had cardiology post transplant visit number 27. (about 41 appointments since birth) Sometimes I just have to laugh.. that is a lot of appointments! Holy Cow! But I am also grateful; there are other heart babies who have had a lot more visits.
Madison's appointment went well. We were able to meet the new cardiologist. I can't remember her name. Has anyone met her yet? She was nice, but I do miss Dr. Everitt. I get so attached and don't like change, especially when it comes to doctors.
Although Maddie's appointment went well, it was during this appointment that I realized... she's officially 2! If there was a hidden camera in our room, someone was laughing pretty hard at us. Madison was into everything! I came prepared for her appointment.. I had a whole bag of toys, books and snacks packed just for her... she didn't want any of it. Instead she wanted to rearrange all the baby hospital gowns. Yes, the ones that are sanitized and folded very neatly in the exam table drawers. Madison is also going through a phase of taking all of her clothes off, including her diaper. She can undress herself faster than I can blink, so at one point, she was completely naked and rummaging through stuff. She also wanted all the band aids and binkies. For an entire hour, I was guarding the exam table like it was a hot stove, trying to redirect her. It was exhausting and all could think about was my diet coke sitting in my car. No laughing.. we ended up coming home with three binkies and a handful of band aids. I'm not even going to ask if we were charged for them.
To give Madison some (small) credit.. we did have a 45 minute wait to see the doctor. And her cardiology appointments are usually about 3 hours long.
In addition to a busy two year old and a long appointment, the lab messed up on Madison's lab order. Few things tick me off more than a lab tech that can't read doctors orders. It was over an hour wait for the IV team, so I took a deep breath and let the lab tech draw Madison's blood work. I even pointed to the exact vein that Madison prefers. Again, she didn't cry. It went well until they called Madison's name over the intercom at the hospital for us to return back to labs. Upon returning, I was told that they forgot to get her Prograf and Cellcept levels. What? Were they kidding? Those are the two most important levels for a transplant patient. I explained to them that I already gave her meds to her and so we would need to redo her labs the next day. And that is what we did. Dang it. I was ticked.
Her labs have lead to more Prograf drama. Nothing serious, just transplant drama. Her Prograf level came back quite low. I've decided that if drugs are a gender, than Prograf is definitely female. Anyway since increasing her Prograf, she has broken out in a bumpy rash? Has anyone seen this before? It looks like goose-bumps. They are white little bumps; not red, but it is spreading. It started on her bum cheeks, thighs, stomach, upper and under arms. Today her ankles were covered and she has a few bumps on her nose. It's not very noticeable unless rubbing her skin, or looking for them. Maybe it's eczema?? I did call the transplant coordinators and they said it sounded like something Prograf would do and they did increase her dosage quite a bit. Maybe? I hope she's not allergic to Prograf... I really have no idea. They asked me to watch it and let them know if it gets worse. We have a pedatrician appointment on Monday, maybe he'll know what it is.. The good news is that it doesn't seem to bother her.
Let me know if you have any suggestions..
1 week ago