Wednesday, May 30, 2012

Catching You All Up

For my IRL* friends who I know aren't on Facebook (and why, exactly, aren't you?) and for everyone else who follows our journey, it's time to catch you all up.  I have to go to my Facebook page to find out what I've been doing.

Since my last post,

I fit in a very early morning hike and captured a beautiful sunrise:


Jack made a return visit to Phoenix Children's to see his orthopedic doctor and get an x-ray of his shoulder.  Good news - the break has completely healed.  Our Phoenix ortho told me he just returned from a conference in Colorado where he co-lead a discussion with our St. Louis ortho.  I won't repeat how our Phoenix ortho described our St. Louis ortho, but let's just say the two are about as opposite as they come.  Our Phoenix ortho (who specializes in spines and scoliosis surgery same as our St. Louis ortho) plays in a rock band and is the ultimate in laid back, non-arrogant, easy going all around nice guy and our St. Louis ortho is an academic type, uptight and not friendly (but, a good surgeon, nonetheless).  I have always liked our Phoenix ortho and the only reason I didn't have Jack's spinal fusion surgery done here was because I didn't have (and still don't have) confidence in the hospital or the care following surgery.  In any event, it was good to see our ortho again.

May is always a busy month with graduations and graduation parties.  I have a niece who graduated from college and a nephew and niece who both graduate high school.  My nephew lives here, my niece lives in Columbus, Ohio.  I pulled out a picture of the first "wave" of grandkids for my parents and we are finally down to the youngest two in this picture graduating from high school:

I can't believe these kids are all grown up ... or that we (the parents) are all so old!  Times flies so very fast.  Seriously .... "don't blink". Oh, and Mary was quick to point out that she didn't think it was right that she and her cousin Michael have the same haircut.  Made me laugh out loud. (You should be able to identify Mary in the picture based on that comment.)  After this picture was taken, there were five more grandkids added to the total, two of whom are mine!


We celebrated Memorial Weekend by getting out of the house and enjoying the unusually cool weather for Phoenix in May.  We took advantage of the fact that Mary didn't have to work and everyone was agreeable to spending time together as a family.  Everyone agreed on dinner, a round of miniature golf and closing out the evening with a stop at Sonic for ice cream.  It was so much fun!

Jack was our caddy. 

At the end of our game


Today was Eric's last day of 4th grade.  I'm glad to have this year over. I didn't really care for Eric's teacher.  I don't think it was a good match for him - although, Eric did well academically, he had some struggles with fitting in and making friends.  

We've got Eric signed up for swim team four days a week this summer, with meets on the weekends.  It will be good for him, but crazy for us as we try to fit in getting him where he needs to be with our work schedules and reliance on nurses.  Eric will also be going to summer camp a few days a week.  I like the program our school district offers because it's not an all or nothing program, you can go all week or pick (and only pay for) those days you want to attend.  I'm trying to keep him busy, but also giving him a bit of a summer break to just "chill" too.  Our school district is modified year round, so Eric only gets seven weeks off and then he's back in school at the end of July.

Last day of school - looking all serious and handsome (if I do say so myself!)


On the Jack front,  we are still battling "issues".  Jack was on antibiotics nonstop from March 21st through April 30th and we are now dealing with what I believe is c-diff.  Based on several identifiable factors, not the least of which is the smell of his stools -- there is no question in my mind that he has c-diff. However, the initial test for c-diff came back negative.  In talking with my friend who is an ER doc - she said that there is a 30% chance of false negatives with c-diff tests and that we should have the test repeated three times, if necessary and get three negatives before we can rule out c-diff.  She also said that Jack should be treated empirically for c-diff based on his symptoms.  Unfortunately, I can't get my pediatrician on the same page.  He agreed to re-run the test and we don't have the results back yet.  If it comes back negative again, I guess I'll have to make an appointment with a GI doc because I don't think my pediatrician will treat for c-diff.  It's all very frustrating.  Jack is still not 100% and, at times, he still feel like crap (no pun intended).  It's been a very long three months!

I received a phone call today from the urologist's office and Jack is scheduled for his final procedure next week to have the stent removed and then we can close the chapter on the whole kidney stone saga once and for all. I did find out what the stone was composed of and I'll elaborate more on that in the next update.

I've got more to update on, but it can wait until the next post .... this is already long enough.

Thanks for checking in ... thanks for caring. 


*IRL = in real life 

Thursday, May 17, 2012

You've Come A Long Way Baby

Over ten years ago, one of Jack's doctors told me (in a nice way) that I needed to "make peace with the ventilator".  I hated the ventilator, the trach and everything to do with "this" life Jack has to live and I wasn't shy about making my feelings known. 

Today, this essay I wrote:  "Management of a Ventilator Dependent Child - A Caregiver's Perspective" was published on the Cure CMD website. 

Going from someone who wanted nothing more than to get rid of the vent to someone who is now writing about how to manage your child on a vent, I've definitely come a LONG WAY baby!

For the record, I still hate the vent ... but, I love my kid, so I've learned to put up with the vent.  In other words, I've made "peace" with the vent! 

P.S. Part II of my perspective will be published next week.

Thursday, May 10, 2012

Ding Dong The Stone Is Gone

Yesterday Jack made another trip to the OR at Phoenix Children's and we can now say the kidney stone from hell is officially gone!  Jack was in the OR an hour and the urologist did lithotripsy.  Here is how lithotripsy works:

The person receiving the treatment either lies down in a water bath or on a cushion. The doctor employs an x-ray or ultrasound machine to locate the stone. The ultrasound machine sends out numerous high-energy shockwaves which pinpoint and shatter the kidney stones into a fine powder that can be passed out of the body through the urine with no pain or discomfort.

Jack wasn't in a water bath for the lithotripsy - but,  he was in a water bath for the 3 hour procedure back in April where they destroyed the stone with a laser through the neph tube.  We aren't quite done with our trips to PCH, however.  Jack has to go back in four weeks for an x-ray and in six weeks to have the stent removed (which is another trip to the OR).  We'll also be going back in two weeks to see the orthopedic doctor to follow-up on the broken shoulder.  It's not really a good thing when the parking lot attendant at the hospital knows who you are - just sayin'!

The urologist said the stone was a total size of 6cm.  To put that in perspective, 6cm = 2.36 inches.  The diameter of a baseball is 2.8-3 inches.  The kidney is about 3 inches wide. So, he basically had a kidney stone the size of a baseball filling up the entire width of his kidney.  Now, that's just insane.  I asked the urologist if it was big enough to make the record books.  He said it was the biggest one he has ever dealt with (considering the urologist graduated medical school the same year Jack was born, he probably hasn't seen that many kidney stones, but, nevertheless - I don't think anyone can dispute that it was a huge stone).

I would venture to guess that not too many people have stones that get that big because the pain they experience never allows it to get that bad.  Jack, on the other hand, has no way of telling us (1) he hurts; and (2) where it hurts.  The poor kid has probably been in pain for years, but we didn't know it.  Only when the pain became extreme and persistent did I have some idea that something was wrong.  It just breaks my heart that he had to suffer so much before we finally did something to help him.  *Sigh*

In any event, it is good to have this behind us and I'm just hoping to not see the inside of PCH as an inpatient ever again!

Jack waiting to go to the OR. They were two hours behind schedule.  Jack didn't seem to mind.  I, on the other hand, was climbing the walls.

Saturday, May 05, 2012

Out and About

Now that the tube is out of Jack's back and his shoulder has had a few weeks to heal, he's able to tolerate being in his wheelchair again.  We all went out to dinner on Thursday.  He's not sharing a whole lot of smiles, but he did well and I think he enjoyed the change of scenery.

Smiles come easy to these two!

Happy Cinco de Mayo!

Tuesday, May 01, 2012

Making Progress

The nephrostogram showed that there was no leak (meaning the hole in the kidney had closed up), so they pulled the nephrostomy tube yesterday.  Jack seemed much more comfortable last night.  Today when I got home from work, he was very stressed and hurting.  It was the first day of using the lift again and having him in his chair.  It's difficult to know what hurts - the kidney area or the broken arm.  I'm about out of pain meds - so, I'll be making a call tomorrow to try and get some more.  The hole where the neph tube was isn't insignificant and he's still leaking urine out of it.

I received a phone call today from the urologist's scheduler and the next procedure is next Wednesday.  It will be done in the main OR under anesthesia and the plan is to discharge after recovery.  They will blast the remaining stone from the outside this time.  The urologist told me today that the procedure causes the kidney to swell - so, although it's not an invasive procedure - it's not risk-free either.  In another six weeks, they will pull the stent (through his penis -- ouch!!) In adults, they do this in the office, with kids - they do it under anesthesia.

More exciting stuff on the Touchstones front.  I'll share all that is going on in another post.