Wednesday, December 2, 2009

Foibles & Follies

So Skyler had his endocrine appointment yesterday. It was hectic, I had a lot to do at work and I had someone come in to cover me from 10:30 until 1pm because I was under the impression that the appointment was at 11:15, Chuck was supposed to get me at 10:30. He slept in until I called him at 10:40, and then came to get me at 11:15 saying that the appointment was actually at 11:45. We didn't get in to see the doctor until 12:45. Didn't get out of there until 1:40 and I didn't get back to work until 2:40. Timewise it was all quite ridiculous. However the appointment itself went quite well.

Our endocrinologist has apparently vanished into thin air and no one told us until we got into the exam room yesterday. And by vanished I mean he went into research in something to do with lipids. Which is actually fine by me because he always seemed way too nervous when he was speaking with us. And from talking to this new endocrinologist who is only covering his position for a while I think I can see why he seemed so nervous. New endocrinologist (female this time) said Skyler has been on way too much prednisone. We had been following old endocrinologists instructions and giving him stress pred for every little cough, sneeze, funny look, etc. He instructed us to give him stress if he showed any signs of anything. New endocrinologist says that the dose we were told to give him is a triple dose, and should only be given if he`s really ill like projectile vomiting with the scarlet fever. She said we should only give him a double dose (not triple like the other endocrinologist said) for stress if he has a fever of 39c. Anything less than that he should be on normal dose. He has been on a triple stress dose for months now! Because he`s been teething and had a cold and every other little thing the old endocrine told us to look for. I`m sort of mad at the old endocrinologist now.. I feel like maybe he didn`t know exactly what to do with us because it`s so rare.

New endocrinologist said we weren`t going to check his growth hormone yet. She said that she wants us to do this reduced prednisone thing for four months because, guess what, too much steroids will cause him to stop growing. She thinks he`s had too much prednisone and if we reduce it he should start growing again. If he doesn`t in the next four months then we`ll look at his HGH levels. She said that she was taught in Montreal and that depending on where they take their schooling they are taught different ways to prescribe the steroid for adrenal insufficiency because as she put it we don`t know exactly how much cortisol our bodies produce in a day or when under stress and each person is different. She said the idea is that normal everyday stress like teething or simple colds he should be able to handle with a normal dose because otherwise he would be in a stressful state all the time, and he shouldn`t have that much prednisone in his body. She also said when we stress dose him just give it to him twice and after that go back to the regular dose.

This means we`ve been overdosing our son with steroids. Sigh.. Add that to my list of things that make me a great mother. I know I was just following his doctors orders at the time. But somehow it doesn`t make me feel any better. I honestly am just trying to do the best I can. I love him so much. I wish I just instinctly knew how to take care of him without a bunch of stupid professionals who (some of them) clearly don`t know what they`re doing.

And now to cheer me up, and remind me that he is at least loved and happy even if he is a roid baby.


Poppy said...

I've been reading your blog for quite awhile, so long now that I can't remember how I stumbled upon it.

The reason I've continued to read, beside the fact that you have a beautiful little boy, is how impressed I've been by the love, the care, the amount of time you put into being the best mom Skyler can possibly have. Truly, impressive.

I'm not sure what your age is, but I'm assuming mid 20's...and I find it refreshing and inspirational to see a young mom take the bull by the horns and learn all that you have learned about Skyler's problems and find ways to circumvent those problems and give that little boy everything you can. The way you have embraced his blindness, opposed to curling up and freaking out, as I think many would, is heartwarming to me.

I have a perfectly healthy granddaughter and her mother can't be bothered to part her hair. Heaven only knows what would've happened to her had she had any type of disability.

So don't beat yourself up too hard about the od'ing of steroids. You were following your doctors orders and you should be able to feel confident in your doctors. It's unfortunate that this particular doctor didn't know his stuff as well as he should've. I have a feeling that your little guy is going to begin growing as his system flushes out and regulates itself to proper dosing of the his meds.

And now that I've yammered on way too much, I'll slip back behind the plants :)

Seriously are a wonderful mother and I applaud you for stepping up as you have for your son.

Best to you.

Stacie said...

Any comment I leave now won't compare to what Poppy already said.

You are truly an amazing person AND mother. Please don't beat yourself up over not knowing that Sky was being overdose on medications. At least you know now, and it is being addressed.

P.S. He is SOOOOOOOO cute in his little jeans. I love it!

John C said...

I like the latest picture. He is a happy baby.

LuckyOnce said...

As I go through this journey of m/c and pregnancy, the thing that keeps happening is that every time I feel like a doctor has given me the wrong information, I've gone out and learned more about whatever it was so that I can feel like I'm more prepared the next time something comes up. I feel like you've been doing the same thing for Skyler. You've continued to take the doctor's advice on things that you don't know about, but you've also learned a tremendous amount about Skyler's condition. You're doing the very best thing you can do for him. By the time he's 18, you'll probably know enough to head off to medical school and become an endocrinologist. :) Keep plugging.

Karen said...

I agree with Poppy and Lucky. You're doing a great job. Don't be hard on yourself for not double checking the expert. As far as 'screw ups' go, that's not a bad one at all. After 16 years and four kids I've screwed up so many times I feel like I'm in a Monty Python skit.

Stacie said...

Skylar is one lucky boy. You are a mother who is caring and determined to give him the very best care and life he can possibly have. You do that through many hours of time spent researching anything and everything you can about his particular illness, working with him and loving him, following your gut, and always trying your best. That is evident in every single post you write!

But, you are not perfect.

Please don't beat yourself up over this issue. You did what was prescribed! Now you know the proper way to dose him (shaking fist at the first doctor). He will grow, and this will soon be a distant memory. Hugs!

Ashley's Mom said...

I think this picture is one of my favorite ever!!

You are a magnificent Mom - don't ever think otherwise. One need only see the smile on that cute baby's face to know that!

Trish said...

good golly, he's cute.

And you know.. You're a good mom. Plain and simple.

ParkerMama said...

He's a doll! You are very blessed.

And listen to Poppy. She's gives some great insight.