Well we’re back!
Today we are back at Children’s Hospital. This time it’s for another Heart Cath. to check the internal pressures in the heart.. This was planned for a while and it’s been a year since Kate last had one. I’m writing this as Kate is back in the OR so I don’t know what the results will be.
It’s been just over a year since Kate’s last heart cath. Last time this procedure was supposed to be an outpatient visit. That ended up with us being in for 11 days and Kate coming home with IV lines and on the Heart Transplant list. Needless to say, there is a little anticipation and stress associated with this today.
In some ways, Kate has been doing great. Back in January she was down around the 2nd percentile for weight. Now she’s up in the middle teens! She’s developing and growing a lot and it’s really fun to see. She seems to be getting just about all her teeth at once, which is not fun but at least is perfectly normal for a toddler. She’s super close to walking on her own (which is scary as heck!) She’s been enjoying doing all sorts of fun things this summer, from splashing at the beach to going for a bike ride or getting out and just watching all the people she can get her eyes on!
In other ways she is super sick. Kate gets fed 100% via her g-tube and it’s running 21.5 hours out of the day at a very slow rate. Her gut has a very hard time processing food and she regularly throws up, sometimes as much as 4-5 times per day at 20-25% of her total volume taken in. She gets meds every 2 hours. Kate is a trooper. She does really well with all the procedures we have to put her through.
Long term, we are trying to keep Kate at home as long as she is having fun and enjoying life. To that end, come late September or early October, we are planning that we will likely decide it’s time to start the next phase and come back in. Kate has been on the Transplant list for over a year now. She is currently a 1b status, which is the highest status she can be and stay out o the hospital. Realistically, she won’t get a heart on that status. If we are in the hospital, she will be a status 1a and will automatically move ahead of anyone on a 1b status. With her being on the list for a year now, she will likely move very close to the front of the 1a list which would help. We’re still expecting this to be a long time in the hospital though. It’s a tough balancing act.
Just heard from the team doing the procedure today that Kate is about as expected. She’s still sick but not any worse than the were thinking. This is good, in general. We might get to go home today! We came into today ready for this to be the start of the long haul but it seems like we might get a bit more time outside!
Update: It’s 7pm and we’re back home! The results of the test were about as expected. We’ll get more details later this week.
