I feel like it has been forever since I have updated everyone on Bea’s health. To me, this is a great sign as there hasn’t been much to report. We made it through the winter without any major scares or health concerns and then had a check up right before I went on maternity leave.
Like I mentioned in a post before, I really soaked in my maternity leave. I think I was also so relieved of any stress as it related to Bea’s health. We chatted with Dr Campbell before we had Louise and she gave us a “maternity leave” from blood work, appointments, etc. That 3 months were the longest we had gone from getting any testing done and it felt great. Better than great, it just felt normal.
SO, we took Bea in for extensive labs and brought her back to CCHMC this past Friday for her annual appointments: going over her lab results, having an ultrasound done on her liver, discussion on topics like vaccinations.
Long story short, the ultrasound came back beautifully. Her liver looks great and her kidneys are strong. The ultrasound tech was so impressed at how still she laid the entire time and I was just bursting with pride from the inside out. After her ultrasound we headed to drop some cookies and then to an appointment with Dr Campbell.
Blood work came back looking outstanding and her EBV is at an all time low. She is even running undetectable on her immunosuppressants. From the way I understand it, when you take a medication like Prograf (the medication that suppresses her immune system), each body can metabolize it differently. I could take .2MG and run a level of a 4. You may take it and run a level of a 6, etc. The higher the number the more immunocompromised you are.
Bea is taking .2MG and she is running “undetectable”. Basically, her body is metabolizing her medication that it almost is like she is not on anything AND her body is not rejecting her liver. It is a fantastic place to be and means her immune system is operating at a strong level.
We couldn’t be more thrilled about this but are also trying to remember that this isn’t necessarily where she will always be. Not that I’m waiting for the other shoe to drop, but while remaining positive, I also try and be realistic.
And another big thing:
Over the last (almost) 4 years since Bea’s transplant, we haven’t had to make many big decisions. It was all about her recovering, keeping her healthy, mitigating risk by keeping hand sanitizer everywhere, etc. It has been challenging, for sure, but we were in the rhythm of just following along without hitting major decisions or roadblocks.
One thing was always in the back of our minds – vaccinations. Because Bea is a liver transplant recipient, she was never given any live vacciness like the chicken pox vaccination and MMR (Measles, Mumps, & Rubella). Without getting into major detail – they don’t recommend transplanted kids to get live vaccines because they are immunosuppressed and can have adverse reactions to those live vaccines.
Knowing that Bea wouldn’t have protection against chicken pox, measles, mumps, or rubella has been a major stresser – especially as “non vaccination conversations” are happening all across our country. We’ve constantly been worried and had to check all of the schools she’s attended to make sure she is surrounded by vaccinated children – but at parks, play areas, etc – we can’t guarantee that she is. And her future elementary school – a lot of our stress has been around where we will send her. We live in a phenomenal public school district but in the state of Ohio you can’t require that kids are vaccinated. So do we go private? Do private schools require vaccinations or do they have to follow state policy?! With Bea starting her last year of preschool this year – these were obstacles we were planning to tackle before she starts kindergarten.
SO – long story long – we chatted with Infectious Disease and Dr Campbell about the risks and obvious benefits to vaccinating Bea and we are moving forward with vaccinations. This is HUGE for us. It will be a 6 month process and we will try the chicken pox first. The reason – if she has an adverse reaction – they can reverse it. The real risk is with MMR because they don’t have anything to reverse the reaction. But if she does well with the chicken pox vaccine – it’s HIGHLY likely she will do great with the MMR.
We start all of this in July with the hopes of having a fully vaccinated child in 6 months.
***If you have stuck with this post up until this point – I applaud you. :)***
That’s pretty much where we are with things – Bea is healthy and moving a step closer to being able to fully protect herself against these diseases! It’s truly a miracle how well she is doing and we are just praying that this positive path continues. She’s surprising us every day and I can honestly say – we do not take one day for granted with our kind, hilarious, inquisitive, friendly and loving little girl. We are so grateful for her health and also attribute so much of her success to our guardian angel 💚.
Oh – and vaccinate your kids. It’s the right thing to do for them and kids that can’t protect themselves.