It is never what I think it is going to be. That has struck me a lot with life with Kiran. Even when I hold a lot of anxiety, it’s never about the right thing.
First, I have to say: This little boy amazes me. Four hours. FOUR hours, during which he had vitals, had an echo, had an ekg, had labs drawn, had doctors examining him … for four hours, he had a mask on his face. Well, several. I’ll have to count for sure but i think we went through 9-10. He’s such a rockstar.
Cardiology was all good news. Heart function looks great. I could get into details, but important thing is heart is stable. Dr R thinks it will be at least five years before we will need to be concerned about a valve replacement. Annual appt remains annual!
Endocrinology was all looking good too…except one possible concern that I am taking with a grain of salt until we see how this next year goes. This is where it’s never what I think it will be – I held no anxiety about this appt; I used it all up on his heart!
First of all, the nurse who did his intake at the very beginning, for whatever reason, didn’t get a height. I would usually ask about this, but I wasn’t on my A game as I had a lot on my mind going into these appts. (Gotta request K for echo, need to remember to ask Dr R about Covid vaccine, have to ask for lidocaine in the j-tip before labs are drawn….you know, the usual appt day stuff). Endo obviously wanted his height since hormones are what they look at, and the growth hormone – so growth stats – are important. So the nurse comes in, in the middle of his final appt, to get the height. It was around 11:30 at that point. We got up at 5:15 this morning and had been at the hospital since 8. Kiran was done. He didn’t want to put his head down on the table to get an accurate height, and the nurse sorta let him get away with it. I didn’t foresee that being an issue because I had no concerns about his growth, but I did make sure to let Dr K know that I don’t feel today’s height was accurate.
That is important, because his height is getting lower on the growth chart. His growth hormone lab result happened to come back during our appt, and it is within normal limits – which doesn’t necessarily mean he isn’t growth hormone deficient but is another piece of info to take into account.
I gave away the big reveal. His endocrinologist is concerned he may be growth hormone deficient. To remind you, the whole reason we see endo is preventative. Because he has a small optic nerve, that can affect pituitary gland and hormones so we want to keep an eye on them. That’s a simplified explanation. So we anticipate potential hormonal issues like this one.
Since the lab came back normal and the height is questionable, we are definitely at a wait and see place with this. What threw me a bit, too, is she said we can, if he has or develops a growth hormone deficiency, choose to treat it … or not.
In our case, we can opt to let Kiran grow according to his body’s natural ability, even if it means he is smaller than the average teen/adult. (Again – IF he has this deficiency – I hold great skepticism still). It would have no effect on how his organs develop or his body works – everything would develop proportionately – and it would make his cares more manageable in the home for the duration of his life. If we choose to treat, it’s a shot every day.
I am thankful to have this information in advance of any sort of definitive diagnosis regarding this, but I am not going to spend too much time dwelling on the decision until it’s one we actually have to make. I am glad to know we need to be watching his height chart, and I am glad to know what the process will look like to do more testing ….
But ultimately, I was just glad to be done with our long morning !!!
Kiran is sound asleep next to me, in the backseat, while I tube him his lunch. These days are not easy, but he amazes me every single time. I’m so lucky to be his caregiver, his advocate, his mama.