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!

Friday, April 15, 2011

Wish Us Luck

Update:  For those who didn't get the update on Facebook - we are home and Jack did well.  Dealing with lots of blood in the mouth right now, but he's acting fine.  Thanks for checking in and have a great weekend everyone!


Today, Jack is having a procedure done under anesthesia.  He is having dental work done - x-ray, cleaning, sealing and a tooth pulled.  He's reached the point of having to do this under anesthesia because of his jaw contractures. To say I'm nervous is an understatement.  I'm not worried about the work being done, I'm worried about the going under anesthesia part.  Unlike when Jack has a procedure done under anesthesia in St. Louis, there has been no anesthesia pre-op consultation - not even by phone.  No contact at all.  My kid has a neuromuscular disease (which affects the type of anesthesia that can be used) and is on a vent and you don't want to know any information about him prior to the ten minutes before surgery when you come and give me "the talk" about everything that could go wrong?  As if I don't already know everything that could go wrong, but, of course, you don't know what I already know because you haven't done a pre-op consult!

Okay, so I have a bad attitude when dealing with the medical professionals/facilities in this City. But, how can I not given what I've experienced at SLCH? This will be Jack's first experience with this hospital (and with this dentist.)  It's the hospital my girls were born at, the hospital my mom worked at for 35 years and the hospital I volunteered at during my college/pre-med days.  I think it's a good hospital, it's just no SLCH.  We don't know them and they don't know Jack.

Wish us luck today.


(I'm sure everything will be fine, but I'll update when we get home.)


Thanks for all your supportive comments on my last post.  Love ya' lots!

Monday, April 11, 2011

For the Record

For the record  . . .

I cry.

Not every day.  Some weeks more than others. 

Usually in the morning on my drive to work when I have peace and quiet and time to think.

Sometimes at night after I tuck Jack in for the night. 

I cry when I look into Jack’s eyes and he looks so intently and deeply into mine and it’s clear that he has so much he wants to tell me, but can’t. Imagine having a headache, an itch, a desire to adjust your weight or reposition your arm or leg, play with a toy, read a book, choose the movie you want to watch or the music you want to hear, or being thirsty or hungry or wanting to give your mom a hug and you can’t tell anyone where it hurts, what you want or how you feel and you can’t do anything by yourself. 

I cry when I think about how absolutely wrong it is that Jack was given a mind that is completely “tuned in” but a body that holds his thoughts, feelings and desires hostage.

I cry when I look at old pictures of Jack and see the progression of his disease a little more each year.

I cry when I look into Jack’s eyes and he looks distant and tired, as if he’s saying “enough”.

I cry when my phone rings at 5am and it’s my nurse calling out and I have to cancel a full schedule of clients because I can’t go into the office.  I cry out of frustration because I am a prisoner to the nursing I so desperately need in order to keep my job.

I cry when I ask how much longer does Jack have to continue to live this hell on earth and yet I cry when I think about how much time I have left with him. 

Crying is very cathartic.  It releases the sadness, the loss, the anger, and the hopelessness I feel.  Crying allows me to put it all out there on the table and then pick myself back up and keep on keeping on. 

For the record . . .

I smile, laugh and find happiness in this life too.   

Monday, April 04, 2011



Antibiotics on board.  Hoping to see Jack's sweet (blemish-free) face soon! All our docs came through for Jack today.  Yea!

Thanks Angie - I always enjoy when you are working and we get to do Jack's doctor's appointments together! :)


Lots of stuff going on with Jack.  None of it serious, but bothersome nonetheless.  A couple of months ago Jack's face started breaking out with all these little bumps.  It didn't look like acne to me and when I asked his pediatrician about it, he didn't really have much to offer in terms of what it was or what could help.  Fast forward a month or so and I decided to take Jack to my dermatologist to see what she had to say.  She thought it was acne (Jack is 12 1/2, so acne isn't out of the question).  She also swabbed his face for a culture to make sure it wasn't a staph infection.  Last week she called to tell me that the culture grew out Serratia - which is not typically found on the skin.  She changed the creme we were putting on Jack's face to a gentamiacin creme.  Jack has also been having issues with styes that started about the same time as the "acne".  After hearing that the culture came back positive for Serratia, I called his pediatrician because I was worried about Jack's eyes - wondering if the styes were related to the Serratia.  My thinking is that we need to treat this thing aggressively if it is in fact Serratia.  Jack's pediatrician basically took the position that it is very usual to find Serratia on the skin and therefore, it mustn't be correct.  He questioned who my dermatologist was and said he'd want a second opinion.  Apparently, just because he doesn't know her, she must not be any good?!  As if I'm not competent to know who is or isn't a good doctor. Pisses me off.

Long story short, Jack's face looks TERRIBLE since we switched to the gentamiacin creme.  And, I mean terrible! It's broken out all over, red and inflamed.  I have no idea what is going on.  So, tomorrow, I will be calling both the dermatologist and the pediatrician and hope to get in to see both and someone better do something!

Jack is scheduled to be put under general anesthesia for dental work in two weeks, but if his face isn't cleared up, I will probably reschedule because I don't want to risk having whatever is invading his face to invade his mouth, especially if they pull teeth and create a means for the infection to get into his mouth.

Add to all that, Jack is draining puss out of one of his ear.  I'm really wondering if it's all related and he's got an infection that is manifesting itself in multiple places.

As I said, not serious stuff . . .  yet.  However, if I can't find a doctor willing to help, it could turn into something serious.  It's times like this that I wish we still lived in St. Louis.  I am so much more comfortable with the care Jack receives there.  *sigh*

Speaking of St. Louis doctors ... I was looking through a bunch of Jack's medical records as I was looking for his MRI report to send to Dr. B at the NIH and I came across a bunch of "Referring Physician Letters" that had been sent from Jack's St. Louis pulmonologist to his St. Louis pediatrician.  This was back when I was in complete denial that Jack had a neuromuscular disease and I was determined that he would get off the vent.  I found this in one of the reports from October of 2000:

.... I became involved in his care last month, at which time he was having difficulties with end tidal CO2s that were in the 60-80 range.  At my recommendation, we had gone to a cuffed trach.  The mother has also determined that this is causing him problems, and has changed the cuffed trach to a Shiley 5.0 uncuffed trach. She has also weaned his ventilator settings and has him off the ventilator completely for two hours at a time. ...  I have suggested that he be off the ventilator for not more than one hour on his trach collar.  I would prefer that we not attempt trach collar trials at this time, but this is something that is not acceptable to his mother.  

This totally cracked me up. You'd have to know this doctor.  She is very much a take charge kind of person.  In fact, I was told by several people when I decided to switch to her to follow Jack on his vent, that she and I would not get along because we were both very strong willed.  Funny thing is, we got along very well.  She clearly respected my opinion and my wishes - although never at Jack's expense.  I read this report and realize how forthright I was!  Thankfully, she put up with me. The day she told me she was leaving St. Louis Children's Hospital was a very sad day.  She practices in Florida now -- a bit too far of a drive for Jack to still see her!

Not a very exciting or interesting update, but sometimes life is neither exciting nor interesting!  I'm so looking forward to starting off my week dealing with doctors (not!)

Wishing you all a pleasant Monday!