After emailing our transplant coordinator last week to check on some things, timing-wise, I found out a few things that had me discouraged and a little upset.
Particularly, though all along, we’ve been told that he’d need to be appropriately vaccinated for his age, all of a sudden, and only because I asked specifically about it, we learned that he needs 2 doses of MMR, and 2 doses of varicella (whereas normally the 2nd dose isn’t given until 4). This is the first time this has ever come up. MMR freaks me out. It beyond freaks me out. My MMR booster gave me ITP, an autoimmune disorder that causes low platelet counts, and was a serious health issue that I struggled with for the entirety of my teen years. High doses of prednisone, weight gain, round face, out of control emotions. It was awesome (not). Giving two doses of MMR, particularly with a very short interval between them (4 weeks is the CDC minimum – which they basically say they think should be safe, but they don’t know for sure – NICE), is seriously making me have a bit of a panic attack.
And I know it’s not a HUGE deal, but it’s frustrating.
And then the ensuing barrage of emails back and forth was further frustrating, with the doctor (who I found out later is going to be Teddy’s primary after transplant, sigh) saying things like “I know it’s confusing when you don’t read medical journals” and “this is just what transplant programs do.” Neither of which really flies with me. I could not give a rip if the Pope himself does something in any particular way, if he does so without evidence.
Also, whereas after Teddy was approved for Transplant, I was told that he needed to hit 9.5 kg (which he did) and get his MMR. Now all of a sudden, it’s TWO MMR and TWO chicken pox. That’s what I found most disturbing – this is the first time it’s come up, and it only came up because I specifically brought it up. I asked them on Monday at my appointment if there was anything ELSE that he needed to get done, and was assured there was not.
Then I asked about a dental visit. Turns out, yeah, they want him to have one of those, too.
It’s starting to get a little frustrating. You would really think they would have some sort of checklist somewhere, right?
However, the GOOD news is that I also found out on Monday that we have an approved donor!! The donor is a friend of mine who wishes to remain private, but we are thrilled to have THAT big hurdle out of the way!