Monday, June 28, 2010

recent clinics

Today we headed to Children's for an urgent visit with Pulmonary/Sleep. We needed to discuss in person what to do next...what new medications or other alternatives could help with Maxwell's sleep issues. I felt like we were at a breaking point, and I am glad the team respected my concern and responded so quickly.

The decision is to try a different med as well as alternating some of his sleep patterns, including a possibility of an early nap (probably induced by med in the beginning).

I don't like that Maxwell needs medication to fall asleep or stay asleep, but it is vital to his health and well being that he gets enough quality rest. Keeping my fingers crossed that we find a peaceful solution very soon!

Last week, we were at Children's for GH (growth hormone) testing. It was for about 8 hours and two different medications were given to Maxwell to test his metabolism. The drugs have nothing to do with the GH, but the way they are metabolized provide valuable information on how the body is handling and/or producing GH. The side effects of those two meds include low blood pressure (causing a very deep sleep) and drastic sugar spikes (causing high energy followed by a crash and more deep sleep). The nurse does vitals on him every 20 minutes to ensure he is within safe levels of blood pressure, sugar, etc.

Max followed the "missing GH" curve exactly...hook, line and sinker. No doubt about it said the nurse...this sweet lil' boy is GH deficient.

His sugar dropped too low on the second test so they actually had to stop it early. Fortunately, they think they were able to get the required information. These tests are necessary to prove to insurance that a child is GH deficient and would benefit from shots.

I am calling the endocrine doctor tomorrow to learn the next step. There is still part of me that questions whether or not this is necessary for Maxwell...will it matter to him if he is only five feet tall? It is worth daily shots for the next 11 years...and possibly longer? Are we trying to make him fit into what we deem acceptable versus just accepting him for who he is?

His endocrine doctor emphasized how difficult it is for men to be short in our society. I very much appreciated that he cared for Max's well being and was treating him with such respect. But I also couldn't help but chuckle about his comment...I truly don't think his short height will make even his top 10 challenges in life. :) But again, I truly appreciated that the doctor was respectful of wanting Max to feel comfortable with his appearance.

Lots to decide. Meanwhile, here are some photos of my "lil' guy" during testing...yes, he indeed was in a very deep sleep!

(This deep sleep allowed me to run downstairs and get excited that Children's replaced Tullys with my favorite. This was great news for a momma who spends lots of time at the hospital!)


Stefanie said...

Sweet pictures--he is such a trooper. Hope you both get some good sleep soon.

Kurby Family said...

Sounds like a long day and more decisions ahead. I'm glad that Starbucks is at the hospital...its the little things, but I remember Starbucks being our saving grace when Josh was in the hospital. I hope you are able to get some rest.

Crystal M. said...

Sounds like a REALLY long day, I know I am going to have to do that with Eva soon and not looking forward to it. I hope the shots help.
Crystal and Eva

Leslie, Arlin and Katie Kauffman said...

What kinds of sleep meds have you tried so far, Amy? Katie has taken Trazodone for years, and it seems to work well for her. It was the only thing we found that worked for her. But I know of others for whom it didn't work so well, so I'm sure it all depends on the child. Hope you all are able to get some rest soon. I know how hard that lack of sleep can be on everyone!

Good luck with the decision on the GH shots. That's definitely a tough one.

Drew said...

sweet sleeping pics. Miss you guys.

Moriah Bettencourt said...

Hey Amy,

I just wanted to share with you that growth hormone caused Alex's scoliosis to go out of control. He is currently stable but it is so bad that in the future he will have to have the surgery to put the rods in his spine.

The GH definitely worked for Alex, although I hated giving him shots. But in hindsight I really wish we would have not done it because the potential 8 hour surgery in his future to fix his spine seems so much worse than being short :(

Kristi said...

You have so many things to weigh and decisions to make. I wish I had advice - - as you might remember we are in the throws of the same conversations regarding sleep and GH, but with a few different considerations for Gracie. So far, we haven't reached any GH conclusions (due to nutrition and existing scoliosis and hip issues) and sleep meds haven't been successful for any stretch of time.
I wish you much, much luck and mamaheart peace as you thoughtfully consider all of Max's options moving forward.

Kristi said...
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Kristi said...
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Kristi said...

Sorry for all the deletes... my comment posted several times! I guess I wasn't very patient when I clicked "publish!"