Hypothyroidism is the most common endocrine problem in children with Down syndrome. It is estimated that approximately 10% of children with Down syndrome have congenital or acquired thyroid disease. Hypothyroidism can lead to symptoms of fatigue, mental sluggishness, weight fluctuations and irritability. Hypothyroidism can occur at any time from infancy through adulthood.
...Ellie has to get labs done every two years. Two years ago or so she was still in her medical fragile days and we had it done while in the hospital. But this time we were on our own and had to get it at our local hospital. We've done labs there before when she was only a few days old (same screening) so we knew our way around our local hospital and the children's section that handles minor childhood issues. But, a major factor when she went in to have the blood taken Friday - we (both I and the phlebotomist) were unprepared for how much Ellie was going to hate having her blood drawn!
It was rough. There were tears. Mine, hers...it did not go well! First the phlebotomist got the needle in, then Ellie started screaming and thrashing and knocked it out and when the lady tried to stick her again it went even more downhill from there. I could not console her - no lollipop or goldfish would do the trick. Running toward the exit was her way of communicating! So we left.
I worried/thought about it all weekend and started formulating a plan for how it could go better. I had a "vision" and prayed that it would work out. The big thing was whoever answered the phone at the lab Monday. I was lucky the girl was very nice and listened to my ideas. She spoke to her supervisors and they agreed to the plan. This time I took my faithful assistant - Julia!
Here are some notes so next time we need to get blood I'll know what worked. Some of this was taken from an experience we had back in that initial appointment right after she was born where they couldn't get enough blood to fill a tube. Back then we had been sent up to the children's floor to a nurse who was used to sticking new babies with tiny veins.
- We went to the children's floor and the phlebotomist met us up there along with a nurse I had requested to assist us.
- We played in the family toy room and picked out some special things Ellie liked and found a wagon to make our walk fun.
- We met the head of that floor who was the one that stuck her years ago and she was very happy to open an actual patient room for us.
- We logged onto the internet with our tablet and started playing Ellie's favorite show.
- I was holding her on the bed, the nurse made a curtain between her face and her arm with a blanket I'd brought from home, the video was playing to the side and Julia was doing a little story with Mr. Potato Head.
- The phlebotomist started and when I tell you I did not even KNOW the second she stuck her - there was no flinch, cry, whimper - nothing!!!! All of the sudden two tubes of blood were full, just like that.
- Then Ellie got to choose a Band-Aid from a book of hundreds of choices and we were on our way!
