Last we talked, we were in-patient and had been working through the heart transplant discussion. A lot has changed since then and we wanted to give you an update.
We were discharged from the hospital last Thursday, based on Audrey’s awesome persistence in pushing but also due to the great work from our transplant team to get us home. Kate is still on IV drugs. We have a small backpack that stays with her 100% of the time. We have twice-weekly at home nurse visits to help deal with the IVs and general care. Other than the backpack with IVs, Kate is pretty much a normal, healthy, happy 17 week, almost 4 month, old. Her personality is coming out more and more. She likes being active and going on adventures with us and she likes playing with her toys. She does not want to nap.
Over the weekend we had a great time escaping the events of the past week. We went up to Duluth for the Festival of Sail where we got to explore a bunch of sailboats and enjoy some of our favorite haunts in Duluth. It wasn’t a trip without it’s issues but it was nice to be up in Duluth as a family, enjoying a little R&R.
On the health front, we are officially listed on the Heart Transplant list. Our awesome heart transplant team really pushed to get all the paperwork and tests completed and after the final sign-off by insurance, we are racking up time on the list, which is how we get to a heart. Other than regular check-ins with the heart clinic, we are on a wait and see basis. We’re hoping that Kate’s health doesn’t deteriorate and that we get a heart soon. We are hopeful as we have been given restrictions on her vaccines. Kate can’t get any live-virus vaccines like MMR and Chickenpox at this point because the transplant team thinks she’s close to getting a heart. Post-transplant Kate will be on immune suppressing drugs the rest of her life so she will have to rely on herd immunity and others getting their immunizations.
It’s been an interesting emotional journey going through this. It’s agonizing knowing that for Kate to survive long-term, someone else’s little one has to die. It’s gut-wrenching to think about. It’s something I don’t like to dwell on but it’s still something that I keep in mind as I’m enjoying all the little moments with Kate now.
Thanks again to all the friends and family that have been supportive. We’re still working on some specific ways people can help but one easy thing you can do is make sure you and your family are up to date on your vaccinations. Get your boosters and get your flu shot. Doing that will help keep Kate safe post-transplant.
