Monday, June 25, 2012

From What I Can Remember ... an Update of Sorts

In my last post I said I had a lot to update on and that I'd get an update to you this week. Now, I don't remember everything I had in mind as far as an update.  I need to start making myself notes! Well, actually, I already make myself notes, email myself reminders from home to work, from work to home, and have yellow stickies all over my desk. I guess I now need to start writing down my blog ideas as they come to mind, or else, "poof" they are gone.

Anyway, here is what I remember that I can update on:


Jack is still experiencing pain and it's hard to know what exactly the problem is.  Jack was pretty miserable most of our vacation - which was not fun for him or for us.  We know that he has residual stone in his kidney based on the x-ray following the lithotripsy.   The day after we got back from vacation, we took Jack down for another KUB (x-ray of kidney, ureter and bladder).  The urologist called me to let me know that there is "fading" of the remaining stones compared to the last x-ray. When I told him that Jack still has periods of pain, he said the only way to really tell if there were stones blocking something was to get a CT scan.  I asked him to please order one - and I'm now waiting to hear from scheduling at PCH.  

The other potential issue is GI.  I never did give you the follow-up on the c-diff.  Both cultures came back negative for c-diff, as did the culture for any type of bacteria.  The issue pretty much resolved on its own, but he's still not 100% back to his normal self as far as his GI tract and it makes no sense when you consider that he has been getting the same food for well over 10 years -- nothing has changed in his diet that would account for a change in his GI tract.  It's a mystery.  I decided to keep the appointment I could get with the GI doc in August.  If nothing else, I want to meet the guy and have him meet Jack so that we are no longer "new patients" who have to wait forever and a day to get an appointment.  Oh, and before Jack's issues resolved themselves, my pediatrician wanted to admit Jack to the hospital for a GI work-up because we couldn't get in to see a GI before August.  Needless to say, I wasn't too keen on the idea.  He said to think about it over the weekend and let him know on Monday.  Fortunately, things improved over the weekend (this was several weekends ago) and the urgency of the situation was greatly diminished.  Thank God, because I don't think I could have dealt with another hospital admission just to sit around and wait for tests to be ordered.

Another theory for Jack's pain as suggested by my doctor friend, Anne (the founder of Cure CMD and an expert in congenital muscular dystrophies) is that Jack might be suffering from compression fractures in his spine.  She said she has seen this with another CMD child who is about the same age as Jack.  In thinking about it, it could be a real possibility given the fragility of his bones and all the moving around he has been through the last several months.  I called Jack's ortho today to get an appointment and was told the earliest they could get me in was July 11th at a different office ... to which I told the woman, "I am not waiting until July 11th and I'm not going to a different office, let me talk to Patty."  (Patty is our ortho's right-hand-woman.)  I talked to Patty and she said "do you want to come in today or Wednesday?"  It sure helps to know who to go to when you need to get something done!  Anyway, I'm taking Jack in on Wednesday for x-rays.  I'm anxious to see what they show.  

Jack has had a very rough 2012 and it just breaks my heart that he is hurting so much. It's written all over his face, is reflected in his breathing and his sats.  He's requiring bagging almost every day and I relate his drop in sats to pain.  I sure hope that not only can we figure out the source of the pain, but also find a way to resolve it once and for all. 

TouchStones of Compassionate CareTM

In other news, the CHOC-Touchstones program was invited to present at the 2012 Patient and Family Centered Care Conference in Long Beach, California which was held last Friday.  We joined "nationally recognized faculty providing presentations related to Best Practice in delivering care that is truly Patient and Family Centered."  Pretty cool, huh?  It was a great experience - notwithstanding my complete fear of public speaking.  Everyone who attended our presentation seemed very interested in bringing the TouchStones program to their hospital.  I'm hopeful that we will be invited to share information about the program with other medical institutions.  Who knew my "Dear Future Physician" letter would take me where it has.  I owe a great deal to my friend, Sarah, who I met on the message board many years ago.  Sarah was moved by my letter and she is the one who pushed to make the program a reality at CHOC.  Sarah is on the Parent Advisory Committee at CHOC and she worked on people there for well over a year before someone would listen.  She is awesome - as is Dr. Katz at CHOC.  In order to get the program off the ground anywhere, we need what I call our "physician champion".  It was two of Jack's former doctors who supported me and helped me to get the message in my letter out there  - they were my "physician champions".  It was Dr. Katz at CHOC who went to bat for us to help us get CHOC on board. It's definitely a team effort and every team needs a physician champion to make it happen.

It's exciting stuff!

I don't know if I mentioned on my blog (I know I did on Facebook) that I've registered the "TouchStones of Compassionate Care" program (which includes the name, the stones, my letter and my video) with the United States Trademark office and once my application makes its way through the process, it will be a registered trademark under the category of "educational services".  More coolness! :)


Well, that's about all I've got for now.  I'll leave you with some pictures of Eric from one of his swim meets this summer. He is doing really well - especially considering a year ago he wouldn't even get in the swimming pool he was so afraid. 


I'll update after Wednesday and let you know what the x-ray showed.


Edited to add:  One more thing I wanted to share, Part II of my essay, "Management of a Ventilator Dependent Child - A Caregivers Perspective" was published on the Cure CMD website.  Here is the link - it's the "personal perspective".

Part II - The Personal Perspective


Christy said...

Wow, Ann. First of all, it breaks my heart that Jack is still in pain and that it shows in his sats and his face! Ugh! I am anxious to hear the results of those x-rays, too!

Awesome work on the Touchstones program and the essay. I hope that when Harlie is Jack's age, I'll have as much energy as you do! You are doing a lot!

Keep up the good work! And hugs to Jack!

Dana said...


I hate it that Jack is in pain. I hope they can figure this out.

I was just thinking about Laneah and Jack. She has low bone densisty. She has the only Dr. who is trying a new method to stregthen their bones. It is infusion therapy. She will be getting this treatment during a four hour period. It is suppose to help so that their bones don't break. Just wanted to tell you about it,and see if it was something you might want to look into for Jack. PM is you want more info.

Susan said...

Ann, I am so sorry that Jack's having such a tough time. It really breaks my heart, both for him and for you because I know it must be so hard for you.

I think the TouchStones program is so fantastic! Congrats on getting the Trademark. It really was a fabulous idea and I hope it takes off like crazy! Who knows how many lives it could touch. You amaze me!