Teacher on Board

Just to be clear regarding my last post, any decision to take "flight" would not involve withdrawing Jack from school this time around. The question for me was, do I just ignore the school district's non-compliance and, as Susan suggested, just wait it out until a teacher is found, or do I file a complaint and make a point of the district's non-compliance.  For the time being, I don't have to do either because I received an email yesterday letting me know that they found a teacher (for the first quarter, anyway).  She came today and the word I hear from Kristi is that she was quick on the uptake with regard to learning and using the eye gaze communication device.  So, it's all good for now.

I called the urologist's office today to find out if they received the report from the Chicago lab regarding the composition of Jack's urine and what might be the culprit for the formation of Jack's kidney stones.  I was told the report is in, but, unfortunately, the urologist is out all week.  So, I won't get the results until next week.  If I wanted to push the issue, I could ask someone else in the practice to call me and read me the report, but our appointment with the nephrologist isn't for a few weeks, so I'm okay waiting until next week.

Hard as it is to believe, the month of October is nearly upon us and that means it's almost time for the 1500 mile trek to St. Louis.  Jack has appointments with six doctors over the course of four days, as well a bronchcoscopy/EUA.  Last month, I added an appointment with the St. Louis urologist - I want to get a second opinion on all the kidney stone stuff.  I've requested and received copies of the most recent CT scan and all reports from PCH that I will forward to the St. Louis urologist before our visit.  I also need to find out which report specifically documents what exactly happened that caused stones to end up in the peritoneal cavity.  Although I have confidence in the Phoenix urologist, I'm anxious to get someone else's take on this whole thing.

I feel like for the first time in a long time, things are settling down with Jack. (Do I dare articulate that?) He's had a good few weeks and he's so happy again.  And, a happy Jack makes for a happy mom.

My weekend away was fabulous.  I got to relax, read, sleep in, drink, eat s'mores and hike in the pines.  It doesn't get any better than that.

A few phone photos to share from my trip up North ...

The menu from the place we had lunch on Saturday. I couldn't agree more with Mr. Franklin :)

I could have hiked all day, but we only had a few hours because we had to head back home.  We've already planned our next hike - we're shooting for an all day hike.  Can't wait!

I love Arizona pine country. 

Have a great rest of the week y'all! :)

Fight or Flight

As the parent of a medically complex/disabled child, my scope of advocacy is wide-ranged.  Yet I learned early on that I can't fight every battle if I'm going to survive the duration of this journey.  Because Jack is a medically fragile kid, his medical needs trump everything else and that is where I focus my energy.  As a result, I made the decision years ago to forgo battles with the school district despite the fact that they fail miserably when it comes to meeting Jack's needs.  As some of you know, I got so fed up with the school district several years ago that I withdrew Jack completely from school and he was considered "home schooled".  I enjoyed the respite from everything IEP-related, including the consistent failure to implement the IEP and the b.s. excuses.  After a three year hiatus, I decided to give school another try because Jack was going to be in junior high - new school, new people. Unfortunately, the same school district.

Under the IEP signed in May, Jack is supposed to have a teacher who comes to the house 4 days a week, 1 hour each day.  The new school year started on Monday for our school district (we are modified year round and the kids only have 7 weeks off in the summer).  Monday came and went and no teacher showed up at the house and I didn't hear a word from the school to let me know what was going on.  On Tuesday, I emailed the special ed coordinator for Jack's school asking her why no one showed up the first day of school and her response was "I am in the process of finding a teacher.  I sent out another request to the district last week and am waiting to hear back. I will keep you in the loop and let you know when I hear back."

So, was she going to keep me in the loop before or after I contacted her to find out what exactly was going on?  And why is she just now in the process of finding a teacher?  And, more importantly, why does she think it's okay that Jack's IEP says he will have teacher four days a week/1 hour a day and that's not happening?  Apparently, our school district just likes to sign IEPs for the hell of it.  This is their M.O.  This is exactly the reason I withdrew Jack from school four years ago because I cannot stand their don't.give.a.crap attitude.  They don't care that they are not in compliance with the IEP. What's my recourse?  I can file a complaint with the Department of Education and they will be found in non-compliance with the IEP. An order will be issued directing them to make up the hours and the order will be ignored just like it was in the past.

I'm angry and I'm expending energy I don't have.  Do I walk away again?  Do I fight or flee?  When it comes to Jack, the fight or flight response varies depending on the issue at hand.  Right now, I'm fighting to make sure all of Jack's medical needs are met with respect to the kidney stone/GI/pain issues.  I'm not sure I have the fight in me to take on the educational stuff right now, especially because I know if I took this to the highest level again, it won't change a thing. Part of me wants to fight this on principle alone.  The school district should be called out for violating Jack's IEP.  On the other hand, I'd rather just take flight and not deal with it.

Today, a parent on the Facebook page for the school that Eric attends responded to a post about the buses not having air conditioning and breaking down all the time, with a comment that "Transportation is last on the list (it seems) for funding." I had to walk away from my computer to keep myself from responding that, "no, special education is the last on the list for funding!" I expect that they wouldn't get it even if I did say something because in their world, a hot school bus is a big deal.  For some reason, the fact that Eric has to spend a half hour on a hot school bus isn't at the top of my list of concerns.  He's getting an excellent education. Our school district has funneled a lot of money and resources into the gifted program Eric attends.  It's a unique situation I find myself in -- having children at both ends of the spectrum receiving the best and the worst of services from the same school district.

In any event, I'm taking this weekend to ponder my next move and I'll be pondering it in the quiet of my friend's parent's condo up North where it's cooler, quieter and where I'm getting away for a girls' weekend.  I'll probably be doing a lot more drinking and sleeping than pondering, but that's okay too.

Jack is doing well - still having a few episodes of pain and distress, but not nearly as many as before.  At this point, we wait to see the nephrologist to find out what the plan of action is.  Thanks for checking in.

I Can Relate

Awhile ago, I happened upon a blog that is written by a father of a severely disabled boy.  He recently wrote a blog post about what the lack of sleep will do to you.  A lot of what he wrote really resonates with me.  For example, I use the "F" word a lot when I'm tired and cranky.  And, the whole thing about anger ... I can totally relate to that.  In my mind, there is no greater form of torture than sleep deprivation.  It's been awhile since I've been up through the night attending to Jack's needs. On second thought, it was only a week or so ago that I was up through the entire night during Jack's last hospital admission.  In any event, because I don't have night nursing, I never truly sleep through the night (unless, I escape  from the house for a short get-away, which I try to do several times a year to preserve my sanity).  Certainly, the lack of sleep is a "killer" for caregivers of medically fragile/chronically ill children.  We get used to it emotionally - as in, "I can do this",  but, physically, it causes incredible wear and tear on us over the long haul.

Regardless, it is what it is.  I really just wanted to share the link to this blog post. I know many of my SN moms and dads who read my blog can likewise relate to much of what this dad writes.

Here is the link:

Nine Plus Years of Sleep Deprivation


As for Jack, he continues to maintain the status quo. Yay!

Tide is Turning

After an absolutely crappy week last week, I was ready to call the urologist first thing Monday morning and tell him we have to do something now about the remaining kidney stones.  The original plan was to wait until Jack sees the nephrologist and then follow up with the urologist. Jack doesn't have an appointment with the nephrologist until mid-August.  We just completed the 24 hour urine collection today and we sent it off to a lab in Chicago.  If you are wondering - and to quote my friend Karen - "what the hell are they testing for that it can't be done in Arizona?", the urine sample is being sent to a lab that specializes in kidney stone prevention.  This lab will try and figure out what is in Jack's urine that is causing the stones to form and, based on this information, the nephrologist will prescribe medication to combat the culprit.

I wasn't prepared to wait until the nephrologist did his thing to deal with Jack's continuous and relentless pain issues.

Then, this weekend, Jack seemed to turn the corner - he had a pain-free, perfect weekend.  He was happy.  I had started a pain log and the last incident recorded was Friday.  We've had four days of no issues and a very happy and content Jack. We've gone four straight days without having to bag Jack once because his sats tanked. It's easily been since February that we've gone this long without having to bag Jack out of distress.  I cannot tell you how unnerving it is to have to revive your child on a daily, if not twice daily, basis.

Given the streak of good days, I'm cautiously optimistic that the tide is turning.  We know the kidney stones are still there, but maybe they are stable and now that we've (apparently) resolved the GI issues, just maybe we've resolved Jack's pain issues.  I sure hope so.  He desperately needs a break and so do we.  For the time being, I'm holding off on calling the urologist and, if things stay the status quo, I'll wait until after the appointment with the nephrologist to find out the plan of action for dealing with the kidney stones.

Right now, I'm just reveling in the fact that I have my happy Jack back.

Admission and Home

So last week went something like this ....

Monday:  Call from urologist regarding results of CT.  Urologist said he'd call my pediatrician regarding impaction issue to see if he could help speed up getting in to see GI doc.

Tuesday:  Go into the office for a few hours; on drive home, pediatrician calls and says that Jack needs to be admitted to have this dealt with.  I tell pediatrician that I'm on my way home to get Jack and take him to appointment to see oral surgeon.  Pediatrician says he'll call GI group.  Within minutes of getting home, receive call from GI's office telling me Jack has an appointment on Thursday morning at 9am.  Load Jack up for the trip to Mayo Clinic to see oral surgeon.  Driving down the road, realize air conditioning is not working (it's 109 freaking degrees outside).  Roll down windows and keep driving.  Arrive at Mayo Clinic, greeted by unfriendly, annoyingly slow registration person.  Meet with oral surgeon -- love him!  (he has gorgeous blue eyes, which didn't hurt either ;-)  Oral surgeon says no need to schedule surgery specifically for impacted tooth - let him know when urologist is going to put him under to deal with kidney stone and he'll pop in and get the tooth out.  I was astounded that a doctor in this City actually suggested coordinating procedures with another doctor and I told him so.  (Incidentally, I'm not going to coordinate it with anything the urologist might do in the future, but I will coordinate it with the dentist when he puts Jack under to clean his teeth.)  Drive home at 4pm in rush hour traffic and no air conditioning in the car.

Wednesday (July 4th): Worked most of the day because I missed half a day on Tuesday and was going to miss half a day on Thursday.  Did end the day on a good note -- Diamondback's baseball game with my sisters, a couple of my kids and a great fireworks show!

(my sister got great tickets from a friend - right behind home plate.  The kids were in the cheap seats in another part of the stadium.  Is that wrong?)

Thursday: Appointment with GI doc.  Saw the CT scan and a section of Jack's bowel was very large and distended.  Discussed option of doing the "clean-out" at home. Would require me to give him Miralax (or something similar) every half hour around the clock until he was cleaned out, with no way to keep him hydrated because his g-tube is his only source of hydration and we would be using it as a route to give him the clean-out medicine.  When exactly was I going to sleep?  Decided to admit him so he could get "Go-Lightly" continuously via a pump and fluids via an IV.  Choices included waiting for a pre-auth or going through the ER.  I told him I had better things to do with my time than sit in the ER.  Dropped Jack and his nurse off at home and went into work for a few hours.  Didn't hear anything by 1pm whether they got the pre-authorization from insurance. Called the GI's office and got the scheduling nurse's voicemail.  Waited an hour, no phone call yet. Called my insurance company and asked if anyone had even called yet to get a pre-auth.  Told that there was nothing in the system that showed a pre-auth was requested. Called GI's office again and left a very terse message that I needed a status update asap.  Received a phone call back from a very helpful nurse who said she'd find out what was going on.  Finally received a call from the hospital that a bed was ready.  Left the office, got down to Phoenix Children's at 5pm to start the "process".  Slept at the hospital with Jack in one of those chairs that they call a "bed".  This is Jack's third admission and I've yet to get a room with a bench/bed.  Phoenix Children's has a brand new building with state of art everything but they didn't put beds in every room, only every other room.  Makes no sense!

Insert here: I was very happy with the speed at which Jack was admitted, IV started and Go-lightly administered. The house staff were all terrific.  A much better experience than our experience on the floor back in March (prior to his surgery).

Friday: Jack is starting to make progress. :-)  I have to go to the office because I have an appointment that I can't miss.  Kristi comes by the hospital to watch Jack for a few hours while I go to the office.  Get the call around 4pm that Jack is all cleaned out and they are going to discharge him.  Drive the hour from work to the hospital, load Jack up and head home.  Side note: Van had been dropped off at mechanics to have air conditioning repaired.  Mark had to rush out of the hospital at 4:30pm (as I'm on my way back to the hospital) to go pick up the van before the repair shop closed.  Thousand plus dollars later and the van now has working air conditioning. Yay!

Friday evening: HOME.

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Now, maybe the above doesn't sound like much and it's nothing compared to what my friend Christy does on a daily basis, but trying to meet my responsibilities at work while meeting Jack's needs this last week (and the last few months for that matter) is KILLING me.  I'm the first to admit, I cannot do it all.  I am flat out exhausted.

How is Jack?

He's much more comfortable. But, I'm still worried about him, for a couple of reasons.

1.  His heart rate all weekend was very low for him - in the 50s and 60s most the weekend and he seemed really tired.  Jack's baseline when he is awake is generally in the 80s and 90s.  Today, his heart rate bumped up a little into the 70s and 80s, but tonight, it's down to 50s-60s again.  Not sure what the unusually low heart rate means, if anything.  His body is less stressed now, which would account for some of the drop in his heart rate, but under any circumstance, 60 is low for an awake heart rate for Jack.

2.  He still has stones that have to be dealt with.  I got a copy of the report from the last CT scan and it indicated that there is a "conglomeration of stones in the ureter".  I asked the urologist about this and he said that he reviewed the CT with the radiologist and they both agree that what they are seeing are stones that would be in the ureter based on their position, but, in actuality, they are the stones that leaked out through the hole that was created in the renal pelvis (not according to plan) and they are really located in the peritoneal cavity, not the ureter.  These stones are different from the 1-2cm stone that is forming in the kidney.  You know what really stinks is that Jack's CT scan will always be deceiving because unless the person reading it knows the history, they will read it as stones in the ureter when they are actually in the peritoneal cavity - or are they? How do they really know?  Pisses me off that this is even an issue.

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The plan this week is to not have one single doctors appointment so that I can actually get in an entire week at the office. Is that too much to ask?  Jack had an appointment scheduled with his pulmonologist this week, but I cancelled.  I need a week off.

We are to get a 24 hour urine in 7 days.  Since he was off his formula during the clean-out, they want him on the Pediasure for 7 days before we collect the urine.  After that, we will see the nephrologist and see what we can do to stop the stones from coming back. And, then ... we'll discuss how to get rid of the stone that has regenerated.  No doubt, another KUB or CT scan is in the future and yet another trip down to PCH and yet another half day or two or three missed of work.

Did I mention that I can't do it all?

Talked to the Urologist Today

Talked with Jack's urologist today regarding the CT from last week.  Two things are at issue:

(1) a new stone is forming in the kidney and it's already 1.5-2cm in size.  This stone wasn't seen on the last x-ray that was taken the end of May, but one month later and it appears on the CT.  The urologist said he talked with the nephrologist and the plan is to have a 24 hour urine test done, determine the composition of the urine and treat whatever is causing the stone to develop.  In addition, Jack will need yet another lithotripsy to deal with the new stone.  I don't know when that will be.  According to the urologist, there is no hydronephrosis (swelling of the kidney due to back up of urine), so, there is no stone blocking anything and the stone isn't likely the source of Jack's "episodes".

(2) Jack is backed up - literally.  He is impacted with stool in a large section of his bowel.  The urologist said that you can't even see any air pockets it's so compacted.  I'm guessing this is the source of Jack's pain.  Despite my pleas, we can't get in to see a GI doc until the first of August. I would think my pediatrician could make a call and get us in sooner, but - to date, he hasn't. His suggestion has been to go to the ER.  Easy for him to say.  The urologist is going to call the pediatrician tomorrow and get his thoughts. This weekend, we tried everything to try and get things moving and were not successful.  I even contemplated a trip to the ER - it was that bad at one point. (had Jack dressed and ready to go.)  Then, I remembered it was July 1st -- the absolute worst day to be anywhere near a teaching hospital! (for those who don't know, it's the beginning of the academic year in the medical world and it's when all the new interns and residents start).  The real reason I didn't take him in was because he eventually got back to baseline and was fine the rest of the day.  I'm not certain we won't end up in the hospital (or at least in the ER) to get this issue resolved.  I should know more tomorrow.

Poor Jack.  The kid has not felt well for months.

Tomorrow we go see an oral surgeon at the Mayo Clinic (in Scottsdale, AZ not Rochester, MN) because Jack has an impacted tooth that must be dealt with.  I'm pretty sure it's not causing him any pain right now, it just showed up on the x-ray a year ago and Jack's dentist said it needs to be dealt with now before he goes back under to have his teeth cleaned.  This oral surgeon is an MD/DDS and he is part of the cranio-facial team.  While Jack doesn't have a cranio-facial condition, he does have jaw contractures and can't open his mouth, so I know this surgeon will understand Jack's limitations and won't break his jaw trying to extract the tooth (well, that's the hope anyway). We will likely be adding an oral surgery to Jack's schedule in the near future as well.

I honestly don't have a clue as to when Jack will be back to 100%, if ever.  But, despite everything he has to deal with, Jack still manages to smile when he's not hurting and if he can keep on smiling, well ... I guess I have to at least try to do the same.

The kid is killing me .... but, I love him to the moon and back, so I'll go to the moon and back to make sure he is taken care of.

No Answers

Jack saw the orthopedist today and had an x-ray of his spine.  According to the ortho,  Jack can't have a compression fracture because his spine is fused.  I'm guessing he knows what he is talking about, but I wish he would have spent more than 2 seconds looking at the x-ray to say from his perspective, he can't find the source of Jack's pain.  The hardware in Jack's back all looks good and, apparently, the x-ray didn't show any obvious breaks or anything else that might explain Jack's pain.  I trust this doctor, but I guess not enough that I'm won't seek a second opinion.  I intend to get a copy of the x-ray on disk and send it to our St. Louis ortho for his opinion.

I was able to arrange the CT scan today so that we went right from the ortho appointment to the radiology appointment for the CT (both places in the same building).  I called the urologist's office after we got home and was told that Jack's urologist is out all week. Grrrr!  I asked if anyone else in the office could pull up the CT and read it.  I was told that they haven't received the report yet and that they will call once they receive the report.  I then informed the person at the other end of the phone that Dr. Z (Jack's urologist) doesn't wait for the report, he sits down at his computer and pulls up the actual film and looks at it!  To which I was told that "our process is to wait for the report and then call".  To which I wanted to respond .... you are wrong because Dr. Z does NOT wait for the report to call me.  Ugh!  Sometimes it's just not worth the argument.  So, my plan is to call tomorrow and tell them to fax me the report and I'll read it!  At least I'll know if something is going on before next week when Jack's urologist will be back and can call me.

*Sigh*

I have a real fear that the CT scan will show nothing and then we are sitting here not knowing what is causing Jack to be in pain.  Then what?  I guess we discuss how to manage Jack's pain because if we can't find the source, we certainly aren't going to ignore the pain.

Time will tell .... in the meantime, we continue to bag Jack through his periods of distress and I'm stocking up on the wine.

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 

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 tracheostomy.com 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! :)

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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. 

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

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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

I've Been Remiss

I am so sorry for the lag in blog posts.  We just returned from a week long family vacation in the San Diego area. It was a family reunion of sorts - it was me, my sisters, brothers and our kids and my dad who all met up in California for the week.  I do have lots to blog about, but I'm too tired tonight to think.  I will share some of my favorite photos from our trip.  All my photos were taken with my iPhone, so they aren't the best, but they are pretty darn good for phone photos.  I've got a busy week/weekend coming up, but I promise a more substantial update next week.


We stayed at Camp Pendleton - Del Mar Beach.  Because access is restricted to military families - the beach wasn't super crowded, which was great.

The "big" cousins helping the "little" cousins build a sand castle

Kite flying

Jack was not a big fan of the beach, but we made him go out a couple of times.  The beach wheelchair does not work for Jack because he has no tone and can't sit in the chair.  My nephews, brothers and brothers-in-law were great in helping carry Jack (in his wheelchair) out onto the beach.  It took four guys to carry him out.

Eric got good and dirty and had the time of his life!

Some in the group went to Sea World for the day 

Eric and his cousins at Sea World

Seaport Village in San Diego (one of the few days Jack was happy)

Mr. "GQ" 

Sunset on the last day of our vacation - awesome!

Thanks for checking in.  More later ... I promise!

The Kidney Stone Saga Continues ....

We were back down to Phoenix Children's today for another procedure under anesthesia to have the stent removed.  The urologist said that the KUB (x-ray of the kidney, ureters & bladder) showed that there are still some small pieces of stone remaining in the kidney AND as a result of causing a hole in the kidney (either from when the neph tube was place or during the surgery to break up and remove the stone) pieces of stone leaked out and now there are pieces of stone in Jack's peritoneal cavity.  Based on an article I read: "Extravasation of irrigation fluid during percutaneous nephrostolithotomy is a major complication that can result in severe morbidity."  Fortunately, as of now - Jack seems to be okay with these pieces of stone floating around his insides.  The urologist said they shouldn't cause him problems - or pain. He also said he doesn't even know how he'd remove them, as he's never encountered this before.  The urologist also doesn't think that the small pieces of stone remaining in the kidney will cause him pain.  I guess that remains to be seen.  It's times like this that Jack's inability to communicate and express how he feels makes it really, really difficult - for him ... and for me.  

The plan is to have a repeat KUB in 6 weeks and if there are still pieces of stone in the kidney, the urologist will do another lithotripsy to try and break them up more.  

As for the composition of the stone, it was determined to be "carbonate apetite".  I got on PubMed to see what I could find out about stones with this composition and found a recent article that discussed the composition of kidney stones in patients with musculoskeletal anomalies - which includes individuals with muscular dystrophy.  I could only get the abstract on PubMed, so I emailed one of the authors and he sent me a copy of the complete article.  On a side note - I sent an email on Saturday night, received a response from the doctor who co-authored the article on Sunday morning and first thing Monday morning - I had a copy of the full article along with another article the doctor thought might be relevant and of interest.  How cool is that?  Just another example of a doctor who cares!  

Based on the article, kidney stones in individuals like Jack - individuals who are unable to move -  were once thought to be caused by infection, but now they are finding that many are of metabolic etiology - possibly due to high urinary pH.  I was initially told that Jack's type of kidney stone was likely caused by infection. However, after removing the stone, the urologist said that it didn't look like it was due to infection. So, Jack's is likely a metabolic stone. They are now testing his urine and we should know more in a few days.  Problem is, according to the urologist, the treatments they have used to lower urinary pH have serious side effects. 

There you have it - more than you ever wanted to know about my kid's kidney stones! :)

And in the meantime  - we will continue to do what we do best .........

Keep calm and carry on! 

(okay, the keeping calm part might be a bit of a stretch.)

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:

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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!

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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

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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!)

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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. 

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*IRL = in real life 

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.

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.

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!

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.

Thanks!

The Sib's Perspective

Eric brought this home from the Sibshop he attended a few weeks ago.  I'm glad that he has a place like Sibshop that allows him to express his feelings on the subject and be around other kids who are in similar situations.  But, I'm sad that he isn't able to have a "normal" sibling relationship with his brother.  It all just sucks sometimes.  

On a Jack note, we head back to Phoenix Children's on Monday and back to interventional radiology.  Hopefully, the kidney has healed and they can pull the neph tube -we are all ready to just be done with the whole kidney stone thing!

Answering Your Questions

To answer Christy's questions in her comments to my last post:

Jack still has the nephrostomy tube in until next week. He has to go back to interventional radiology for a nephrostogram (shooting dye into the kidney) to see if the hole in the kidney is closed.  If the hole is closed, they will pull the tube.  In two weeks, he has to go back under anesthesia (I believe) to have the remainder of the stone removed.  I think the stent stays in for awhile, but eventually, that will have to come out too.

I am, of course, worried about the second procedure given Jack's broken arm.  He will need to be on his stomach again. I'm really not sure how they will protect his arm.  The break is near the shoulder, so it can't be casted.  For typical kids, they simply put the arm in a sling. They gave Jack a sling, but he really doesn't need it because he doesn't move his arm.  Wrapping the ace wrap around his arm/body is really what will protect it when he is not in bed.  It's been a huge challenge to provide his care with the broken arm because it's on the same side as the neph tube and to change Jack's diaper and check his neph tube, you have to roll him and, to roll him, you have to touch his broken arm.  It's fairly do-able with two people.  It's much tougher to not hurt Jack in the process when there is only one person doing the care - which is the case during the day.  You also can't put a shirt on Jack now because you can't move his arm without hurting him.  I bought a bunch of white t-shirts and a friend of mine made a cut down the arm of the shirt and ironed on velcro so that it can close like a hospital gown.  He won't have much variety in his wardrobe for awhile, but he probably doesn't care as much as I do. :)

I talked with the urologist today and he had heard about the broken arm.  I told him that when Jack comes back for the remaining procedures, I am wrapping him in bubble wrap!  I think the arm was broken when he was in IR on Friday having the stent and new neph tube placed because I didn't notice him being in pain until that night. But, it's hard to say exactly when it happened.

Jack is supposed to follow-up with the orthopedic doctor in three weeks.  Supposedly, the bone should be healed by then.  But, with all the manipulation that Jack still has to endure with the remaining procedures, I'm not convinced it will be healed in that time frame.

To answer Dana's question - yes, there is no question that his arm was broken at the hospital during one of the procedures.  Of course, it was not on purpose.  I warned the team every time I turned Jack over to them that they had to be careful because he was breakable.  I have no way of knowing how he was handled in IR or in the operating room.  I'm sure they understood that he was fragile, but I don't think they really understood just how fragile his bones are.  I'll be curious to see the reaction of the people in IR when we go back next week.

As far as whether I am happy with the care provided by Phoenix Children's this last stay - the answer is, yes. In my opinion, there is no comparison between St. Louis Children's and Phoenix Children's as far as overall being a top Children's hospital.  SLCH is in the top ten in the country, Phoenix Children's isn't even close.  I will continue to take Jack to SLCH to see his team of doctors, however, I need to be able to deal with his acute issues locally - whether I like it or not.  I was fortunate to be able to secure Jack a PICU admission during his stay.  The care in the PICU was comparable to the care at SLCH.  The attendings are around and accessible and when a test is ordered - it is performed the same day - not days out like Jack's prior PCH admission.  I'm very happy I didn't travel for this issue because there is just too much follow-up.

Thanks for checking in on Jack and for keeping him in your thoughts and prayers.

Postscript

X-ray showed broken arm near the shoulder. They put his arm in a sling, removed the PICC line and discharged Jack minus 80% of a kidney stone, plus a nephrostomy tube/urine collection bag and a broken arm.  Not sure Jack comes out a winner in this one. 

Loading into the car for the ride home.

Jack and I are both ready for our own beds tonight!

Plan B

Hospital life ... if it's anything, it's all about Plan B (or C, or D, or ....) Jack's CT scan and dye test yesterday showed that the nephrostomy tube has poked a hole in the kidney and, therefore, they can't go in and break up the stone now because they don't want the stuff going out of the kidney into the body cavity - that would not be good.  So, it's on to Plan B.   Today, Jack went back to interventional radiology they put in a "J"-stent and a new neph tube.  Jack will now come home with the neph tube and PICC line. He'll come back in about 10 days to have another dye test done to see if the hole in the kidney has closed up and, if it has, they will remove the neph tube and the PICC line.  Then, he will have to come back again to have the stone externally broken up with the lithotripsy (the procedure most people undergo for kidney stones). These follow-up procedures will all be outpatient.  I do think it's probably better for Jack that he is avoiding a second big surgery. What's not better is that he is coming home with a bunch of extra tubes sticking out of his body. 


The plan is to discharge tomorrow, however, his potassium has been low - even with them giving him IV potassium all day, so it may be delayed a day.  I also noticed this evening that when I moved Jack's arm (the one with the PICC line) - he grimaced.  I manipulated it several times and got the same reaction.  I know the look and it usually means a broken bone.  When I mentioned it to the nurse and said I wanted it x-rayed, she said she would run it by the doctors and see if they agree. At which point, I told her ... "it will be x-rayed and if the doctors don't think an x-ray is necessary, they need to come talk directly to me."  Fortunately, they have ordered an x-ray for the morning.  


I've been very happy with the care Jack's received here at Phoenix Children's, but have confirmed based on my experience a month ago, that the PICU is definitely where he needs to be.  It really was a Godsend that we were able to have this issue dealt with locally because of all the follow-up required.  I'm just hoping that Jack will be bailed tomorrow and it will be years before we are inpatient again.

I posted the first picture above on Facebook this morning and this afternoon, received this: 

Have a great weekend!

(p.s. - when I started typing this post, it was Friday, when I finished, it was Saturday.  So, despite the fact that the date of this post is Saturday, when I say "today", I mean Friday and "tomorrow", I mean Saturday)

The Kidney Stone Saga

You know, I would never have guessed that a kidney stone could cause so much trouble.  It's been a rough two days for Jack.  We arrived at the hospital Tuesday morning and Jack was taken to interventional radiology to have a nephrostomy tube placed.  The anesthesiologist immediately clued in to the fact that Jack has no good veins and access was going to be a problem.  Fortunately, they decided to put in a PICC line and I was very happy about that because with as many times as he has to go under anesthesia, I felt so much better knowing that he had good, stable access.  It took them twice as long as expected to get the nephrostomy tube in because of the size of the stone.  The resident told me that a couple of times they were ready to call it quits because they didn't think they were going to be able to do it (the process involves threading a thin wire through the kidney and into the bladder and using it as a guide for the tube).  But, they were able to brainstorm as a team and managed to find a way to get the tube in.  Needless to say, Jack wasn't happy when he woke up and had a tube coming out his back and a two-lumen PICC line coming out the upper part of his arm.

Today was the surgery to get the stone out.  He was in there for over three hours!  They were able to get 80% of the stone out this round.  On Friday, he goes under again and they try to get what's left out.  Jack's now has a tube draining bloody urine coming out of his back along with a foley catheter.  The kid's body has been brutalized all because of a kidney stone.  I feel so bad for Jack.  Granted, he doesn't spend a lot of time in hospitals or have to undergo a lot of procedures, but the fact is, he shouldn't have to deal with any of this.  Isn't it enough that he's trached, vented, g-tube fed and unable to move his body at all?  Enough already!

Anyway, I'm at the hospital with Jack, it's late and I'm falling asleep. I hope this update makes sense.  Tomorrow, Jack gets a CT scan to give the urologist a better idea of what's left and how best to approach the surgery on Friday.  Hopefully, Jack will rest tomorrow.  I don't think he'll be sharing any smiles though.  I don't expect to see one of those until we are wheeling him out of the doors of this place.

Thanks for checking in.