Wednesday, April 20, 2011

Just A Short Update

A lot of this post will be a repeat for people who are on FB.  Just a short Jack update, just because some of you have asked.

Jack's dental procedure

Jack recovered from his dental procedure just fine. The dentist said that he doesn't need to go under for cleaning/dental work every six months (I can't even imagine), but he probably will every 12-18 months.  Jack's teeth aren't too bad because he doesn't eat anything by mouth.  He does have an impacted tooth that will eventually have to be dealt with by an oral surgeon.  When I was looking for a dentist to take over Jack's care, I decided to go with the dentist who is with the pediatric cranio-facial team at one of the hospitals in town.  I figured he likely has the most experience dealing with complicated jaws/mouths. The team also includes an oral surgeon - who we will need to see sometime in the future.

When the anesthesiologist came to talk with me before surgery he told me that he hadn't heard of Jack's form of muscular dystrophy (which was listed on a detailed medical history that I typed up and had put with Jack's chart) and, therefore, he did what any good doctor would do, he "Googled" it!  He said he got a lot of hits with my name :)  Then he asked ... "so, you are a lawyer?"  Seriously, I hate when I'm asked that question! I always want to plead the Fifth, but that would probably be a give away, eh? He asked me if Jack was a difficult stick and I said "yes" and told him he might want to just start with the feet because he was not going to have any luck with the arms/hands.  So, naturally, he had to try the arms/hands before he ultimately got an IV in his foot.  Jack was stuck no less than 8 times based on the number of bruises I counted.  Sucks.

I had some concerns about the anesthesia and whether the anesthesiologist was aware of the contradictions of certain anesthesia and muscular dystrophies.  I don't think he got that Jack's type of congenital muscular dystrophy - while rare and not widely published - carries the same anesthesia risks as the more prevalent and studied forms of MD.  Because the surgery was short and didn't require a deep level of anesthesia, I didn't push the issue.  But, in talking about this with Anne R (of Cure CMD), she indicated that this highlights the need to get information out regarding the anesthesia risks for our CMD kids.

Jack's face

After ten days on Cipro, Jack's face isn't looking all that much better.  His face is still so red and bumpy.   We have a follow-up appointment with the dermatologist next week and I'm hoping she can come up with a magic potion because, as far as I'm concerned, Jack is too young to be dealing with acne (or whatever it is) issues.

We went to an Easter party at Ryan House last weekend.  Eric enjoyed hooking up with a friend he met at the Sibshops put on by Ryan House. We learned that both our families live in the same area of town, so we are hoping to get the boys together more regularly.  They seem to be a perfect match for each other.  Jack enjoyed seeing "Grandma Bev" again. She is so good with Jack.  She was happy to "take" Jack from me and go hang out with him in the Sanctuary room where they read books together.

Jack and Grandma Bev
you can obviously see how red Jack's face is :(

Hanging out with some weird looking bunny :)

Finally, here is a link to a post on the website where I posted an article that discusses quality of life for children with chronic health problems.  I can't add an attachment to the Blog, but if you go to the link, you can download the article from the post.  I think it's an interesting article and one that was well worth reading.

Enjoy the rest of your week y'all!


worthy said...

ow, Jacks face does look sore. hope you can get the magic potion! That bunny is scary :O

John and Jenna Gensic said...

I'm sorry Jack had to be stuck so many times. Poor kiddo. Thanks for the article link.

CS said...

1. That bunny is freaky.

2. It's interesting about the awareness of MH in MD kids. Could it be regional? Every single anesthesia team we've encountered has been very vigilant about Nate and he doesn't even have a diagnosis. Nate's always first case so there's not a chance of cross contamination of drugs. Both the nurse anesthetist and the anesthesiologist talk with us extensively beforehand. The anesthesiologist makes sure to talk with us afterwards. Maybe because there ISN'T a diagnosis they're extra careful? I'm intrigued.

3. Get cards made to take to procedures: Parent first, lawyer second. We'll see which face you get depending on how well you do your job. By the way, the parent face is much scarier.

Anonymous said...

Poor Jack! His face looks uncomfortable. I hope they can get it cleared up very soon! As usual, wishing you a happy and healthy day:)

Susan said...

I hope you all have a nice Easter.

tess said...

Grandma Bev looks so sweet and kind. I am so glad you are enjoying Ryan House. Aby hasn't been to the Rotary Home since Christmas. I might have to give them a call. xoxoxo Tess