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.

___________________________

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.

_______________________


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.