Medical updates- Mattie

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Orthopaedics- Mattie fell off of a swing 3 weeks ago today. She managed to break the end off of her radial bone. (radial head fracture) Mattie had to have her arm set in the ER. She was a trooper as usual. They normally knock the kids out…but we were having anesthesia issues and she had it set with just a block. She had an orange cast for a week and a pink one for  a week. She got her cast off last Thursday and has started physical therapy and occupational therapy to try and gain back some of the range of motion that was lost with the break.  The doctors were torn on letting her try the cast and therapy or to put pins in the elbow and cast her for 6-8 weeks. In the end they decided to get her in and out of the cast and get the arm moving asap.  We will go back in 2 weeks and see how things are progressing.

MJ cast at Stone Mountain

While we were in having the arm looked at we also decided to talk to the docs about her spine. We haven’t had a local spine doc in 7 years and decided it was time that we see someone local. (We will still follow up with Dr. Betz in Philadelphia) Mattie was given a script for a new cervical collar and we picked it up today. She will use the brace to help with muscle strain on days that she is feeling more fatigued or having pain. We will have a full spine check and x-rays when we go back for the arm check.

Eye- We noticed a small bump on Mattie’s eye 6 months or so ago. She went in for an eye exam and they told us that we needed to have the bump removed if it didn’t clear up in 3 months. That was 3 months ago and we are going to be heading in to surgery next Friday. The bump is just a blocked oil gland and it should be an easy non eventful surgery. The eye doc told us that Mattie will need glasses some time in the future. She is less than thrilled. Hopefully it will be a year or two before we have to get them.

GI- Lots of icky details here that I am sure you would rather not read, and Mattie would prefer I not share with the world.  Mattie will have some testing tacked on to her surgery Friday. She is having a scope of her esophagus, stomach, and the top of her small intestine. They will also be taking a couple of biopsies.  This should also be an easy procedure with short recovery time.

Mitochondrial Myopathy- We met with the docs again this week and got a few more test results and info. They believe the mito is a nuclear gene defect.. but still have not identified it. Her labs from our last visit look pretty good. They drew a little more blood to take another look at her Vitamin D. They also upped one of her other supplements. She is up to 82 pills a week. YUCK! We also discussed her autonomic issues and got a bit more information on how we need to be caring for M. The fevers that she is running when she is out in the heat or exercising are causing her to have spiking lactate levels and also increase her alanine amino acids. Long story short, she can’t run any more fevers. We are looking for a cooling vest for the summer and are trying to come up with a plan to keep her cool and still let her be 10.  It sucks.. not sure what else to say about that.

Pulmonology-  Mattie’s pulmonary function test looked pretty good. She is having a lot of dips in her O2 saturation. We are keeping a diary of the numbers and may need to do some more testing in the next few months. They talked to me about doing another sleep study and an exercise test. She seems a bit overwhelmed with all of the medical junk going on at the moment and we are going to try to hold off on the testing until our next visit in 3 months. They discussed the possibility of Mattie needing oxygen at home or just better asthma care.  We will know more when they look at our diary in a couple months. They have also advised us that if the numbers dip below 92 that she needs to go to the ER. We have done that a few times in the last few months and am trying not to worry about it too much.

That is all I can think of at the moment. I will update more next week. Thanks for your prayers…. and thank you to my wonderful friends that put up with my craziness, sanity trips to Huddle House, dirty house, and insane need for child care. You know who you are, and I love you!

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