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!


Anonymous said...

Frustrating stuff, to be sure! I hope Jack's doctors figure out how to work together for his sake. Can you email a picture of his face to your team in St. Louis? I'm sure you've already thought of that, but it has helped us living so far away from N's team. Hoping for a good week full of answers!

worthy said...

Urgh, poor Jack, that's not fun. Hope you get some answers soon. Kristy's suggestion of emailing a pic to St Louis is a good one. Best of luck xxx

CS said...

Stuff indeed! Whoa. The ped would tick me off royally. As if you would take anything so lightly and let any doctor test him! urgh. I hope you were able to get something figured out today.

I love the report/letter. It's hilarious how the doctor is very diplomatically saying what to expect from a Mama Bear. Yay for Ann! Kicking butts and taking doctors' names.

Anonymous said...

That doesn't sound very comfortable. Hope they can figure out what is going on. Poor Jack.


Anonymous said...

Crap. That is a bugger. Very frustrating indeed. I hope they can figure it out soon for Jack.
Tess xoxo

Christy said...

What do you mean not serious??? The more I read the more I gasped! I guess it was the pus that threw me over the edge. I really hope that the antibiotics take care of that stuff and that he's feeling better soon!


Susan said...

Shoot! That's not what I wanted to hear. Jack is ususally so "stable", ie not a ton of medical stuff popping up. I hope they figure this out. My adoptive brother and dad who both had MD, both got styes. Interesting. Jack is about at the age to have acne but I'm glad you are getting it checked out. Hang in there.