I feel like I’m just running on adrenaline. Thursday we found out Kieran’s lab work showed a “questionable positive” for one of the inborn errors of metabolism (IEM). I have no idea what that means and of course I didn’t think about asking for the exact levels when I got the call. Not that I would’ve remembered them – I was driving to meet a couple to teach them NFP.
Anyway, now we must wait for insurance to approve coverage since none of the pediatric geneticists are covered by our insurance. I’m also waiting for insurance to approve Leo’s specialist, as they stopped covering that doctor (there aren’t any pediatric gastroenterologists covered by his insurance now, either).
I made the mistake of googling IEMs, trying to figure out which one he might have. Bad idea. For one, it’s hard finding information about those that may not present until age 5, as the bulk of information is about those that present in the neonatal stage. Then the information I do find of course talks about the worst possible outcomes. Yes, the best possible outcomes are also mentioned, but a mother worries. I stopped googling when I realised I was hyperventilating.
I feel somewhat like I did when Leo had his diagnosis. When he was first seen for the symptoms, he had the ultrasound the following day and we knew the results the day after that, so at least I didn’t have to wait. But then we did have to wait to get into GI, and we had no idea what to expect. This time the pediatrician can’t order the necessary tests, so we have to wait until we can get into the geneticist. Who knows how long that will take, and I just want answers so we know how to treat this! I know a lot are managed by diet, but again I won’t know exactly what kind of diet until the tests are done. So there’s this constant thought circle going through my head, it seems.
Hard as it is, I do try to follow the sage advice of a Benedictine monk I once heard: when things seem to be at their worst, pray the Glory Be. So Glory Be to the Father, and to the Son, and to the Holy Spirit, as it was in the beginning, is now, and ever shall be, world without end. Amen. Mother Mary, pray for us, for Kieran.