Last week I got a very unexpected call from a growth hormone company, saying they were sending me free drugs before we’re even approved by insurance, so we can start now and don’t have to wait. But see, they’re confused. I want to wait. I do not want to poke my daughter with a needle every day. Still she proceeds to give me all the information I’ll need to know about the packages coming to our house, and the nurse that will be calling to come teach my husband and I how to properly stab our sweet daughter. Sigh. I’m not ready for this. Which no one takes into account, and these beauties show up at my door. 
A literal backpack full of torture supplies. I went to my cousin’s wedding in Utah this weekend, and figured I’d be nice and not leave Brandon to do this all by himself the first couple of times it has to be done. The nurse came yesterday after he got off work. We got to practice how to swab everything with alcohol, attach the needle, and on a cute blue little pillow…. STAB. She screamed and wiggled as soon as she smelled the alcohol, then I wiped her leg…not good. Brandon had to hold her down. It was done and over with quick enough, but really? Every day? The nurse said some people give it to their kids after they go to sleep. We’re going to try it tonight, see if she stays asleep.
So yesterday was…awful. It ended with the stabbing in the leg, but began with the dreaded taking of the blood pressure and temperature. She may scream louder at having her arm or leg “hugged” by the BP cuff than she does being poked by needles. We went up to Oakland Children’s Hospital to get a ACTH Stem test. Something with Cortisol levels. I don’t even know anymore what they are doing to her. Luckily this test only lasted an hour. The one we were scheduled for, though we talked the doctor out of it, was a 4 hour growth hormone stimulation test. No, thank you!
We went into the day hospital. I see all these tiny kids hooked up to all sorts of machines with lots of tubes and IVs running everywhere. That scared me more than anything. But no one was screaming. They were calmly eating the lunches provided, or watching their own little TV, or playing the Playstations hooked up to their little TVs (crazy right?) So I felt a little better.
I don’t remember any other kid crying the whole time we were there. Maggie however, screamed about the BP, screamed about the thermometer, and when they put the name tag bracelet on her ankle, went off the edge. She eventually calmed down, but kept telling me, “I’m all done with the bracelet. Share it with Mommy! Please Wendy(the nurse) can I have the bracelet off?” Oh, it was so sad! Luckily I had Regina Spektor and a slinky. Then they come strap her arm to a board so she cant move her wrist once the needle is in. They took her blood, then gave her some medication, then we had to wait an hour and they took more blood. Fingers crossed we don’t have to do that anytime soon. Oh, wait. She has to get blood drawn every 3-6 months while on growth hormone to make sure it’s working. Sigh. Hopefully she’ll get used to this soon, and it won’t be so traumatic every time.
We have a before, trying to pull off the bracelet, then trying to get the board off with her knee because we’d already discussed that peeling off the tape is a bad choice and would make it break. She calmed down quickly, but kept exploring the tape and tubes board and gauze with her left hand. Last is the end, we had to keep it one long enough that she was for sure not bleeding anymore. I’m glad that’s over.
How am I going to do this every day?? Luckily we have a slinky right?
Oh Demarae I feel for you. I went through all of this when I was her age. Is there a reason they are giving her the injections in the leg instead of the butt? It seems horrible now but she will adapt and hopefully she will have good results. Hang in there Mom and Dad.
ReplyDeleteThank heaven for slinky's! It will get better, and it will all be worth it.
ReplyDeleteXoxo
Hi,
ReplyDeleteSo sorry you are going through that. We had to give Tommy shots every 3 days for a year when he was about 2 years old. I waited until he was in a deep sleep and then would creep into his room to give the shot. I learned quickly that if you have one of those flashlights strapped to your head it frees up both of your hands.
Hope the shots help you guys get the results you want.
Does she have a blanket or stuffed toy that gives her comfort?
Cynthia
What a nightmare! Poor, sweet Maggie. I hope she gets used to it eventually :(
ReplyDeleteI'm sorry y'all have to go through that. Just keep telling yourself it will help her. I am wondering, though, why you are giving her the shots when you said you wanted to do more tests first?
ReplyDeleteTalking with my dad and Maggie's doctor, if the growth hormone levels are low, then they're low. More testing is unnecessary, though would provide a more accurate idea of levels. However, we are still doing the MRI just to see what has changed since her last one, which was when she was 5 months old.
ReplyDelete