Today was a big day for Emu. A day that will hopefully be a turning point. A day that hopefully means that we are not far from getting answers. It's a bittersweet kind of day though...it's a day that also means life may never be the same for him/us. A day that could bring the unexpected. A day that could bring answers that we don't want or a day that means our worst fears may soon come true. We fear the unexpected...but we fear the unknown too. So, hopefully, in a few weeks we will at least have some answers...some sense of direction.
As you know, Emu has been closely watched for more than a year, as he has literally not grown since his 2 year check up and most recently, he has had a borderline abnormal bone age scan and was then refered to an Endocrinologist. His initial workup from the Endocrinologist indicated that he has a Growth Hormone Deficiency because his IGF (insulin growth like factor) was extremely low. So, today...he had his Growth Hormone Study done. He spent 1/2 a day in the hospital having a Growth Hormone Stimulation Test in which they gave him 2 different drugs to stimulate his pituitary gland to release growth hormone. A GH-releasing hormone was given to him through his iv, the other drug was given to him orally. Then, his blood was drawn every 20 minutes for...I think it was actually 2 hours, maybe a bit longer.
Last week, we went to the $1 store and he got to pick 6 things to take in a hospital "goody" bag. He was suppossed to choose from these items throughout the day, both as a distraction and as a reward. He had one backpack of fun things to do and another for his special "goody sack".
Apparently, everyone didn't get the memo, because he was fishing long before he was ever poked!
They drew his initial blood, then gave him his meds. Then we had some waiting to do...so, we had some time to play :)
We counted! We smiled We counted some more! We fished some more...not allowing his "unbendable" arm to hold him back! |
The next time they drew his blood, he got pale and had the same "look". I asked if he could be lightheaded and the nurse then explained to me that the drugs they gave him have one side effect...nausea and vomiting. The other nurse quickly went and grabbed a puke pan and a towel, obviously she knew his fate. Nurse 1 explained that sometimes they will get really pale...(yep, check there)...and their lips can turn grayish...(yep, check again). He slouched over and was pretty much "done". Not long after, I was cuddling him in the momma's boy kind of way when he started to vomit. Falcon said that he never saw me move so fast...but by golly...we didn't miss his puke pan :)
A side effect of the med soon hit him...and he spent the next few hours like this and like this (when he wasn't being snuggled and "babied" by Momma |
Once he had iv fluids going for a while, he started perking back up and he started playing again. Soon after, he had his last blood draw and got an Icee treat. He swore it was soda and needless to say, he was very happy.
He deserved this treat, don't you think? Feeling well enough to play darts :) |
Breakfast in bed |
He got his "Certificate of Bravery" and went home feeling great.
Now, we anxiously await for when we will get the results that we pretty much already know...he is Growth Hormone Deficient. What happens if it actually comes back normal, then what? What happens if it comes back as abnormal as we think it is? Then, why is he deficient...is it a pituitary tumor, an infection, a syndrome, or no real reason at all? What testing will they do next, what else will he have to go through, what are we facing then? Do we take the risks (diabetes, cancer, etc) and chose Growth Hormone Therapy if it's simply a deficiency? So many questions!!! So much uncertainty and so much worry!!!!
At least we are one step closer. We are either ruling something out or confirming what we think we know.
All I know right now, is that I have one amazing, happy, smart and brave LITTLE boy!
He was such a BRAVE boy today! |
No comments:
Post a Comment