Hello!
Whoa! Does anyone want to tell me where the last couple of years went? I cannot believe that Amelia is 2 years post Glenn 2.0! It's been a wonderful/scary/relaxing/anxiety ridden 2 years.
Just really quickly, I want to fill you in on how Amelia has spent the last 2 years.
She started school! She did an early childhood special ed program, when she was 3! When I say that she loved school and riding the bus more than she has ever loved anything in her life, I mean it. Homegirl, LOVES school. Since starting school in 2017, she also started dance, swim lessons, and 4k! In February, we had the fantastic opportunity to go to Disney World with Make A Wish! It was an amazing trip, so magical. Now here we are, just finished celebrating her 5th birthday. She's real ticked that her birthday is over, and that its time to move onto Mabel's birthday. haha!!
Health wise, Amelia has been pretty good. We have gone to regular cardio appts in Madison. When she started school last year, we had an IEP meeting with the special education director, and all of the people who would be working with Amelia. We had goals for her to hit, and she did great, hitting those goals. She was having physical therapy and speech therapy. By the end of the year, PT thought she would be fine without for this next school year. At the first meeting, back in the fall of 2017, I remember talking about what she was capable of doing, and what her stamina was like. She could walk the hallways without assistance, and she rarely wanted help or breaks. When we had her IEP meeting this fall, that was different. She's needing many more breaks, she's asking to be held more, and she can't make it more than the length of a school hallway before she's needing help. There wasn't an event that I can remember, where it was apparent that things had changed, but it did kind of happen all of a sudden.
So now we have these conversations about next steps. Amelia is outgrowing the Glenn 2.0. She's not in dire need of anything right this very second, but we need to be making plans right now. As a parent, one thing that you really don't want to hear is, a brilliant cardiologist tell you that they're not sure what to do. Amelia isn't a good candidate for Fontan, but its not out of the question. Amelia had a cath, back in September, to measure many things, but most importantly, the pressure into the lungs. Ideally that number is low. A few months after Amelia's Glenn 2.0 surgery, she had a cath and those numbers were suuuuper high. Thats when she was put on a handful of medications to help with that. This last cath, the numbers came down considerably, but not enough to make this a super clear answer. She has other things going on that can't be measured with a cath or MRI, that could make the pressure number actually much higher. SO, This month, she had an MRI, to see if they could get an even better picture. Eh. They got more info, but it doesn't help answer the question, of what the next step is.
So, we went to Milwaukee yesterday, to meet with a new cardiologist at the Children's hospital of Wisconsin(CHOW). American Family Children's in Madison doesn't have a heart failure/transplant team, and CHOW does. Going into the appt, I was already snobby against CHOW, because there isn't a better place than AFCH, but I was pleasantly surprised to see how much I liked CHOW. The Dr. is fantastic. His name is Dr. Kindel, and he did a great job, explaining the process of a transplant. He spent an hour and a half, talking about a fontan for Amelia, and a transplant for Amelia. We have zero answers with what we are going to do next, but we have a clearer, more accurate picture of what a transplant looks like.
Now Dr. Kindel is going to present Amelia at conference, and see what other doctors have to say about her complex case. They could all recommend Fontan, or they could recommend transplant. Our regular Cardiologist has said that she will likely agree with what they say.
SO, now we wait to hear back from Kindel in Milwaukee. It could be a couple weeks. If they recommend listing Amelia for a transplant, he thinks she could be evaluated and listed by February or March. If the plan is to go forward with the Fontan, then that will happen some time this Summer.
Everything is so up in the air right now, and I don't even know how I feel about any of it.
I really wish that Walt Disney World had a program where you can hide from reality, in the castle, for as long as you need. For me, it would be until Jesus comes back.
We don't have answers. We don't even know what we are hoping for. Truthfully, the Fontan is so scary for us. We've done it, and it went terribly, but it would be great if we could do it, and everything went well. Transplant is complicated, and can happen at any time.
Right now we would love prayers for Amelia's lung pressures. It would be wonderful if they could come down even more. We would also love prayer for the teams that are trying to come up with a plan for Amelia. A clear direction and answer, would be lovely. Also-if you want to pray for Jesus to come back, I wouldn't stop you. :)
Love y'all!
