Ten Day Mark

Today is the 10-day mark for this hospital admission and we are assured another 7 days, at least.  What I wouldn't give to sleep in a bed again.  After a week of sleeping on a fold-out chair for 7 nights, when the nurse manager came into Jack's room last Sunday and asked how things were going and if I needed anything, I jumped at the opportunity to request a room that has a bench bed.  They moved Jack that night into a new room.  At least the accommodations have improved this last week.

It is the little things after all.

Morning rounds were much improved on day 2 and 3. That said, I don't feel as welcome to participate with this team as I did with last week's team.  But that's okay. This week should be a low key week as long as Jack stays the status quo.  Speaking of staying the status quo, Jack wasn't on his home vent but two hours and he needed to go back on the hospital vent because his CO2s were too high after he had another episode of pain.

The urologist called me yesterday with the plan which was neph tubes placed in IR on Wednesday and surgery next Monday.  I'm not real happy with the five day lag between tube placement and surgery, but the thinking is that if there are pieces of stone breaking off from the large stone (how that would happen I don't know, it's not as if Jack is engaging in contact sports), then putting in the neph tube will give the stone an exit from the kidney without causing Jack any pain.

Jack had the nephrostomy tubes placed today.  They placed two tubes because there are stones in  different parts of Jack's kidney and the urologist wants two routes to go in and get them out.  I wish I could just say that Jack went to IR, got the neph tubes and I'm 100% comfortable tonight with where we are.  It took two and a half hours to get the tubes in.  That's really much longer than it typically takes for these things.  Jack's anatomy makes the placement much more difficult.  When Jack returned from IR, I saw two really thin tubes extending out of Jack's back and they are both capped off.  One is a long tube that extends past Jack's back so he doesn't lay on the cap and the other one is really short causing Jack to lay on top of it. Several things immediately jump out at me: (1) there is no bag attached to either of the tubes; (2) the neph tubes look nothing like the neph tube he had last time - and came home from the hospital with; and (3) the cap on the tubes has two hard plastic "wings" and Jack is laying on the cap and the wings are digging into his skin.

I raise my concerns with Jack's nurse and the NP.  Jack's nurse wrapped a big wad of gauze around the cap, so I think we are okay with preventing any skin breakdown from that.  The NP told me that the IR doctor said that both tubes are supposed to be capped.  That's not what the urologist told me when he stopped by Jack's room this morning.  I was told that one of the tubes would drain urine. When the resident stopped by Jack's room later, I raised the question with him and he agreed that it was his understanding that the neph tube was supposed to allow urine to drain.  But, he reiterated what the IR doctor said.

Am I missing something here? Why would you even ask the IR doctor - she just placed the tubes at the direction of the urologist. The urologist is the guy in charge of the whole kidney stone thing.  So I called the urologist's office and left a message for him.  He called me back right away (love him!)  We talked and he confirmed that, yes, one of the tubes was supposed to be hooked to a bag to drain urine.  He said he'd call the unit.  Shortly thereafter, everyone was on the same page. However, the challenge became finding the supplies to hook up to the tube.  After a little creative thinking and a little cutting and taping, they came up with  tubing that would hook to the neph tube to drain the urine.  Here's the problem, not one drop of urine has drained from the neph tube and it's been 6 hours since they hooked everything up.  Clearly, something is wrong.

*Sigh*  Can't anything ever go according to "plan"?

Don't answer that.

I realize with each passing day my perspective becomes skewed.  What starts out as a team effort (Rah! Rah!) becomes an "us" against "them" mentality.  I know in my heart that these are good people who all want to help Jack as best they can.  I remember when my mom came out to visit me, oh so many years ago, when Jack was taking up residence in the St. Louis Children's Hospital PICU.  She spent one evening with me in the PICU (I think Jack had been inpatient about 2 months by this point) and she told me I had "ICU-itis" and I needed a break.  Turns out, I just needed a little Xanax. :-)

Well, my friends, that's the update for today.  I'm hoping Jack has a good night and that the urologist can shed some light on the situation tomorrow morning.

Onward.

Changing of the Guard

I now know why you don't want to spend more than a week in the hospital.  Today started a new week and a new team consisting of a new intensivist and a new resident.  This morning, we were the last stop on rounds and by the time they got to Jack's room at 10:30am, I was more than a little stir crazy.

The resident starts giving her report on Jack and states that he is a 13 year old with muscular dystrophy, who is ventilator dependent and who presented with increased secretions. 

What? Did she really just say my child was admitted to the PICU because he had increased secretions?   After everything Jack has been through the last week in this unit and that's what this team thinks he's in here for?  The intensivist then proceeds to ask why is Jack on regularly scheduled iv pain meds and why is he on the hospital vent instead of his own.  Legitimate questions for a kid with increased secretions, but my kid isn't here for increased secretions!  Apparently, the team that just finished the week in the unit does not give report to the team coming on board. I lost all interest in participating in the discussion because they were so off base and I didn't get the sense that my input was desired at this point.  After they left, all I could think was if they proceed to undo all that the team spent last week doing to make sure Jack is comfortable, I was going to lose it.  Clearly, it is going to be my job to educate the team on where we started, where we are now and what the plan is based on all that transpired last week.  I should just tell them to read my blog entries for the week, it would be a lot easier.

In any event, I had to go into the office today, so Mark stayed with Jack.  I called Mark as I was driving to the office and asked him to please ask to speak with the resident and make sure she gets the accurate story of what is going on with Jack.  He called me later and told me he talked with her, but I'm not convinced we are on the same page yet.  They proceeded to put Jack back on his home vent and switch him from iv to oral pain meds.  It's as if they are preparing for discharge, however, that was not the plan when the team signed off on Sunday.  Furthermore, since they are busy changing everything up, I wish they'd go ahead and stop the continuous feeds as well because I do not want Jack going home on those.  

I think tomorrow will bring more clarity once our urologist is back in the picture. We should know when Jack can get on IRs schedule and, based on that, when surgery will be scheduled.  And, I will be more prepared to actively participate in rounds tomorrow morning, keeping in mind that

is a two way street. 

Onward.

Another Day in Paradise

I'm starting this post at 3 o'clock in the afternoon, that way I'm assured of finishing it the same day I start it.

The issues when Jack was admitted one week ago were three-fold: (1) kidney stone; (2) UTI; and (3) impaction/slow gut.  In a week's time, they have resolved the UTI, determined that Jack has no significant GI issues and adjusted his feeds to account for the slow gut.  We knew Jack had the kidney stone coming in, but didn't believe it to be the most pressing issue because we've (knowingly) been dealing with kidney stones since February and haven't seen Jack decompensate due to pain like he has this past week.  I really thought we were on our way out of here by tomorrow at the latest, but Jack had another episode of decompensation this morning and the intensivist says that it has to be due to the kidney stone  at this point.  So, where do we go from here?

We could go home, try to manage Jack's pain with round-the-clock pain meds and, if necessary, continue to bag Jack through periods of distress until he can get on the surgical schedule for removal of the stone.  I think the docs here would rather not send us home knowing that Jack would likely continue to decompensate when his pain level is high.

The other option is to try and get Jack on the schedule now to have the stone removed.  I know our urologist will do everything he can to get Jack on his surgery schedule as soon as possible. The hold up is interventional radiology.  The first step in having the stone removed is to have a nephrostomy tube placed and that is done in IR and getting on IR's schedule is the challenge.  The reason it is so difficult to get on IR's schedule is because they only work 8-5, M-F.  It's beyond my comprehension why this is.  But, I'll refrain from a commentary on all the things that bother me about PCH.

Jack's urologist has been called and I was told he'll be in to see Jack either today or tomorrow.  It's really going to be his call whether we have the surgery done sooner than later.  I think he'll do everything he can to open up his schedule.  But, he's also going to have to be the one to push IR to fit Jack in their schedule.

What we are running up against is our trip to St. Louis. The further we push this out, the closer we are to the first week in October the less time Jack would have to recover from surgery to make the trip. The original plan was to have the surgery to remove the stone when we got back from St. Louis, but there is no way that Jack can wait that long.  If it looks like Jack will have the surgery too close the the St. Louis trip, I'll be on the phone trying to rearrange our St. Louis appointments.  All of Jack's St. Louis doctors know we travel far to see them and I'm fairly certain that if I am unable to get everything rescheduled in the same week by going through their schedulers, I can go directly to the doctors and they will get it done for us.

Could I just skip the trip to St. Louis?  My answer would be no, for several reasons.  During this hospital admission, we've noticed that one of Jack's eyes has a cloudy half-moon area just below the pupil.  Looks like a new cataract has formed on the eye he had surgery on last year.  While not an urgent issue, he needs to be seen by his ophthalmologist and when it comes to Jack's eyes (which are  very complicated -- surprising, I know), I'm sticking with the guy who has been operating on them since Jack was one year old.  The other issue I really feel needs to get checked out this year is Jack's heart.  He's been through a lot this year and I want to make sure his heart hasn't taken a hit as a result, or if it has, I guess I want to know that too.  The Heart Center at SLCH is one stop shopping, so to speak and, it's where I'm most comfortable with Jack's heart care.  Seeing the neurologist, ENT and ortho doc are not necessary, but if we are out there, we might as well see them.

That's what I know as of now.  Jack's days are good as long as his pain is under control. As of today, they are giving him a scheduled dose of a non-narcotic pain med with orders for ativan/morphine for breakthrough pain.  So far, he's not needed anything but the scheduled pain med.

I realize that these updates are ridiculously detailed. But, hey, I'm a detail kind of person, so it's what you are going to get from me!


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UPDATE: As I was typing this entry, the urologist called me on my cell phone and said that he will contact IR on Tuesday and try and get something set up. He also said that he has to get the equipment lined up that he has to use for the surgery and he has to clear his schedule.  He is hoping to get Jack on IR's schedule this coming week and have the surgery the end of the week or next Monday at the latest.  Looks like we are here for at least 2 more weeks.  Serenity now.


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Just have to share that while I'm hanging out in hotel PCH, my sister Joan and her family are enjoying parents' weekend at the United States Air Force Academy in Colorado Springs where my nephew is a first year cadet (or whatever they are called):

and my sister, Maureen is spending the weekend in California where she and her daughters ran the Disney half and then are spending a few days enjoying the park:

(My nieces, Bridget and Kelsey before the race)

Yea, I know ... life isn't fair.  *Sigh*


Thanks for loving my Jack, y'all!

Report

I'm going to try and make this a short report because, big surprise .... I'm tired.

I believe I left off at the decision to commence clean-out number 3 and the PICC line.

Yesterday afternoon when I came back up to Jack's room after he had the PICC line put in, I was stopped by the GI nurse practitioner.  The PICU team had requested a GI consult and apparently, the GI docs are too important to conduct the initial consultation, they only talk to you after their NP has.

The NP made a comment about us being from St. Louis, telling me that she was from St. Louis too and had worked at Barnes (the adult hospital next to SLCH) for years.  The St. Louis connection gave me a comfort level with her she probably wish I didn't have.  I pretty much unleashed all my frustration on her and told her that I thought Jack needed a scope, that I was tired of all the admissions and getting no resolution to Jack's pain and if something wasn't done soon to help Jack, I was putting him in the car and driving  to St. Louis (as if that was even a possibility or that she cared?!)  She asked a few questions, but mostly just listened.

A couple of hours later, Jack's nurse came in and turned off the GoLYTELY. When I asked her why, she said because GI said the KUB did NOT show stool in the bowel.  I was a little annoyed that GI was all the sudden calling the shots when I hadn't even been graced by a physician's presence yet.  I asked Jack's nurse to let the resident know that I wanted to talk with her.  A few minutes later, both the resident and the Intensivist showed up.  I asked why the change in plans and why GI was now calling the shots.  (I'm not even sure why I was upset that GI was calling the shots, I wanted them involved, didn't I? I think it was their approach.  I prefer the team approach, not being told what we are going to do).  In any event, the Intensivist said that he asked GI to consult and that we just need to remember that whatever GI comes up with, it's only their opinion.  He said we were free to accept or reject their opinion, but that we at least needed to hear it.

I have to digress here and say that all the planets and stars must have been aligned just right (and by the grace of God), the Intensivist covering the PICU this week couldn't have been a better fit with my personality.  He's a high energy guy and he handles my high maintenance energy personality very well. He "gets" me and he and I think alike.  I also get the sense that he is very protective of his patients, he likes to provide all the care as much as possible and he doesn't like specialists coming in and tromping on his territory.  

Anyway, later that afternoon, the GI doc came by Jack's room to talk with me.  He, obviously, had been prepped by the NP because he didn't really have much to say, but suggested that maybe we should scope Jack's stomach.  I added that I thought it would be a good idea to get a colonoscopy too.  He was okay with that, but told me that he wasn't covering the hospital on Friday and that it would be another GI doc performing the scopes.  Shortly after the GI doc left, the Intensivist stopped by and asked if I was okay with the plan, which I totally was.  He also told me that the GI doc who would be performing the scopes was very good - that she was a "thinker" and a good person to have trying to figure out Jack.

The scopes were done this afternoon and I was so hopeful that they would give us the information we needed to pinpoint the source of Jack's pain. After the scopes were finished, the GI doc went over the procedure and provided me with copies of her reports.  To give you an idea of how things went, the Endoscopy Report provides "the procedure was incomplete".  The reason it was incomplete was because she was unable to get the scope down Jack's throat due to his enlarged tongue and his jaw contractures, which made it impossible for her to manipulate his jaw and neck to get the scope in.  Rather ingeniously, however, she scoped his stomach through his g-tube site.  She didn't find any ulcers or anything obvious in the stomach that would be causing him pain. She did take biopsies.

The next report was the Colonoscopy Report, which likewise provides "the procedure was incomplete".  In this case, she could only go so far with the scope because it would have required manipulation of Jack's body that she was not comfortable with given his fragile bones. She didn't feel it was necessary to see further into the colon because there wasn't a concern that Jack had a bowel disease that would require looking further up (such as Crohn's).

The doctor felt like she saw enough of what she needed to see to come to the conclusion that Jack doesn't have an ulcer, impacted stool or anything obvious that would explain his pain. She thinks it's a motility issue.  The recommendation is to change his formula to a pre-digested formula and give it to him over time instead of giving bolus feeding.  I asked her how someone like Jack - who has had severe muscle weakness all his life, can all the sudden have motility issues. She mentioned something about maybe having a virus or some infection that triggered it.  Doesn't make sense to me.  (According to my friend who is a doctor "motility is what they end up with when they don't know what else to call it").

The Intensivist and I are both a bit skeptical because Jack had another pain episode this morning and he hadn't had any food in his stomach for several days (only the clean-out).  However, we have nothing else to go on right now.  They started Jack on feeds tonight at a very slow drip (starting at 5cc/hour) and we'll see how it goes until, as the Intensivist said - "he throws us another curve ball".

The one thing they have not checked is Jack's gall bladder.  I mentioned it to the resident this evening and she seemed to be on board with ordering an ultrasound of the gall bladder.  If they don't bring it up in rounds tomorrow morning, I will. The GI's biopsy results won't be back until Tuesday.  At this point, I don't have any idea how long we will be here. I just know that I'm not leaving until I'm comfortable that I won't be back within the week.

Obviously, we won't be going to California and I won't be participating in the Disney Half Marathon with Team Cure CMD.  I'm sad and I'm mad.  Yea, I know .... life isn't fair. The only thing worse than spending the weekend in the hospital is spending a three-day weekend in the hospital.  But, here we are and all we can do is try and make the best of it!

So much for a short report.  For the third time, I've started a post on one day and finished it the next!  Have a great weekend friends.

Where Are We?

I've started the first sentence of this post about ten times already and can't seem to go anywhere.  I'm so tired I can't think, but I want to give you all an update.  As I sit here trying to compose something, three feet away the nurse practitioner is poking all over Jack with a needle trying to get a line in him for the third time today.  He lost two lines today.  They've exhausted the feet and hands, they are now going for the chest.  The day Jack was admitted, the IV team suggested that they order a PICC line. Apparently, no one listened and Jack is suffering the consequences.  He's now on IR's schedule tomorrow for a PICC line.

Anyway, here's where we are.  Yesterday evening they decided to start Jack back on his regular feeds, with the hopes of discharge today.  We usually just pour the entire can of Pediasure in his feeding tube, so they did the same.  Mark was here for the evening feeding and he said that Jack seemed uncomfortable when they fed him, but he was tolerating it okay. After I got back to the hospital later that night, the nurse gave him another can.  Within minutes of giving him the can, he started showing signs of being in distress again.  He was crying (Jack almost never cries), grimacing, turning red, heart rate going up and sats going down. As I've described it before, it looks like the pain comes in waves and it is relentless. I asked the nurse if she could pull the food back out of his stomach to see if it would give him some relief.  While she was doing that, Jack's heart rate shot up to over 200.  The highest I saw was 220.  I haven't seen numbers that high since Jack was a baby.  The nurse was really studying the monitor while this was going on (I now know she was paying attention to the heart wave).  His heart rate then dropped down to 100 pretty quickly and then went back up.  At this point, she listened to him with her stethoscope and called the resident. I'm looking at Jack and he is still crying and he's clamping down and not breathing well and the monitor is alarming for all kinds of reasons. The room filled with people and a bunch of tests were ordered "stat". From what I could decipher, Jack was in ventricular tachycardia.  They gave him several meds, including ativan and he eventually settled down and his heart rhythm returned to normal. Also, earlier in the day they had switched him over to his home vent as another step towards discharge. During the event with his heart, they put him back on the hospital vent.  I asked the resident this evening exactly what happened to cause the v-tach and he said that Jack was hypo-ventilating (due to the pain) and he became acidotic and that's what caused the heart arrhythmia. 

Needless to say, I couldn't sleep after watching all that transpired. Thankfully, Jack feel asleep with the ativan on board. Too bad it wasn't a buy one, get one free deal, because I could have used some ativan myself. 

This morning during rounds the plan was to start Jack on his feeds more slowly using the feeding pump.  I can tell you, I knew it wasn't going to make any difference slowing the feeds down, he wasn't going to tolerate them. But, it's not as if they were going to take my word for it.  They started his feeds with the intent of giving him one can over two hours.  I think he got about a twenty minutes into the feeding and it started up again - the pain and everything that goes with it.  I asked Jack's nurse to get the resident and Intensivist in the room so they could observe what was happening.  They stopped the feedings and ordered a KUB.  The Intensivist called me over to look at the x-ray and it showed that Jack was still impacted in the middle part of his colon. (Yet, he'd just had a KUB in the ER two days earlier and nothing was noticed and, he was supposedly all clear at the end of his last admission less than 10 days ago.)  The plan - do another clean-out.  Been there, done that and it hasn't resolved the problem yet.  I'm becoming very irritated with this plan and I'm sure Jack is pretty darn sick of it too.  Regardless, I don't get to write the orders.  So, we are doing clean-out number three.  After they think Jack is cleaned out they will get (yet another) KUB to make sure.  Then what?  I'm going to make sure that he stays in this place for at least 24 hours, maybe more, to make absolutely sure that Jack tolerates his feedings once they are resumed.  Every other time we've gone home after a clean-out, Jack is good for about a day or two and then the pain rears its ugly head little by little until it reaches the point of no return - which is the point where Jack's breathing is affected and we are back to bagging him again.  Do I think the third time will be the charm? No. My gut tells me there is more going on, we just haven't figured it out yet.  

Another thing that I observed, as has the Intensivist, is why can Jack tolerate the GoLytely (the clean out solution), but not his food?  If it is a matter of his intestines being inflamed and irritated because of the UTI and/or impaction, he should be just as uncomfortable with the GoLytely as he is with his food.  Is it possible that Jack has developed a sudden intolerance to his formula?  I think we need to get GI involved and I think they will if, after this clean out, Jack continues to decompensate when he is fed. I really have no idea where we are going with this. But, if it is as simple as a clean out, then, in my opinion, it would have worked before.  I get that we were dealing with an undiagnosed UTI with the prior admissions. However, the Intensivist also wonders why, with the UTI resolved, is Jack still having all the GI problems.  

Jack is just complicated because his body is a complicated mess due to the progression of his disease. I always request copies of the written reports from all of Jack's tests that he has done here at PCH.  I received the reports from his last stay in the mail yesterday.  Reading through the various reports and the description of Jack's body from a clinical perspective, it really hit me that we will never get Jack back to 100%.  At this point, it's more a matter of keeping Jack pain-free and comfortable - basically, palliative care.  It puts making the trips to St. Louis in a new light - not that I'm going to stop taking Jack to his St. Louis doctors anytime in the near future, but it's food for thought.  In any event, right now we have our work cut out for us with the kidney stone, UTI and GI issues and I just hope and pray that we can get these resolved here and now with this admission because Jack is tired ... and so am I.

It's 1:30am again as I finish this post and I wonder why I'm so tired I can't keep my eyes open during the day?

Thanks for all the love you share with your comments here and on Facebook, and for your texts, emails and phone calls.  It's the most awesome feeling to know that my Jack is loved by so many.  I'll close with part of an email I received from a friend of mine who also takes care of Jack as his nurse on a PRN basis:

"I love that kid and it breaks my heart that he's going through this.  There is something so deep about Jack that I love and he is so much fun to hang out with."

There truly is something very "deep" about Jack that is hard to explain, but you can't help but feel it when you take the time to be present in his presence.

Love ya'-

How We Got Here and What We Know

Disclaimer: This is written on about 2 hours of sleep and 40 cups of coffee since Sunday morning (it's now 11pm Monday night), so cut me some slack on the typos, okay?

I knew the weekend was going to be a long one after getting a report from Jack's nurse, Kristi on how his Friday went.  Jack's episodes of distress where his heart rate skyrockets and his sats tank have been happening more and more frequently over the last few months.  We know he has a new stone in his kidney and we know he has issues with being impacted.  We keep finding ourselves inpatient to deal with these issues and, yet, Jack's episodes of distress haven't really let up.

All hell broke loose starting Saturday morning during Jack's vest treatment.  About half way through Jack's treatment, he had an "episode", so I stopped the treatment and proceeded to suction Jack.  The suctioning didn't help and his sats continued to drop.  I grab the ambu bag, turn on the oxygen tank and bag him until his sats go back up and the color returns to his face.  I skip the rest of the vest treatment and give him about a half a can of Pediasure.  I turn on his TV and step out of his room to go do something else. It had to be no less than 15 minutes when I hear his pulse-ox alarming low sats again.  I go back into his room and the color is fading from his face again, he looks distressed and his sats are dropping.  I bag him again until I get his numbers to an acceptable level.

The dropping sats, distressed Jack and need for bagging at least once every hour continued throughout the day. Mark and I were convinced that Jack still had bowel issues because we didn't believe they got him completely cleaned out either time he was inpatient to deal with the issue.  Believing it to be an impaction issue, we didn't think there was really anything we could do to help Jack except continue with the Miralax routine prescribed by the GI doc and just continue to support him through the periods of distress.  However, by late Saturday afternoon, I was a little worried because we had never had to bag Jack so continuously to make him comfortable. Maybe once or twice a day, but certainly not all day long.  I decided to increase the rate on his vent significantly and to give him continuous oxygen bled into his ventilator.  I was able to keep his sats up by doing this, but it was clear that Jack's distress was not respiratory, it was pain related.  I also decided to give him a dose of Lortab, which I had been avoiding because it would only contribute to the constipation issue. As much as I hated to admit it, I needed to take this kid to the emergency room because he was really hurting and I couldn't help him.

After having made the decision to take him in, it hit me that we didn't have our van because Mark took it in for service prior to our upcoming trip to California.  It was after 5pm and the shop was closed until Monday.  We don't own another vehicle that will transport, or even hold, Jack's wheelchair and Jack.  I was stuck.  The only choice I had was to call 9-1-1.  I really didn't want to make the call and was trying to come up with something ... anything that I could try to make Jack comfortable and avoid taking him in.  All the time hearing the pulse-ox alarming and knowing that Mark was bagging Jack.  So, I bit the bullet and dialed 9-1-1.

"9-1-1, what's your emergency?"

"I have a 13 year old son who has muscular dystrophy, is trached and ventilator dependent and he is in respiratory distress.  I need to get him to the emergency room, but I don't have a vehicle to transport him. I don't need the flashing lights and sirens, I've got things under control, I just need a ride."

"Ma'am, if you have a child in respiratory distress, you are going to get the lights and sirens."

Well, crap.

I didn't have too much time to worry about what the neighbors would think of all the commotion because within 2 minutes there were five fire department personnel at the door.  Mark escorted them to Jack's room where I had taken over bagging him. I explained to them what was going on and said we just needed a ride to Phoenix Children's.  Wisely, they didn't feel the need to do a whole lot to Jack other than get an EKG strip.  They asked a lot of questions, but pretty much took their lead from us. They loaded Jack in the back of the ambulance and told (requested) me to ride in the back with Jack.  They said they don't usually let parents ride in the back with their kid, but they'd really appreciate it if I did.

By this time, the Lortab had kicked in and Jack was a little less distressed.  He was hooked up to  oxygen, so his sats were good.  I'm looking at Jack thinking "Really? REALLY?"  You make me call 9-1-1, take a 30 minute ambulance trip down to PCH and your numbers are all good.  Kid, you are killing me!

PCH wasn't terribly busy, we were seen by a first year resident who was 12 years old.  (Really, she looked 12 years old, I'm not kidding!)  I hand her Jack's 3-page history that I keep current and take with me every time we see a new doctor or visit an emergency room.  I tell her what has been going on.  After conferring with the attending (I'm assuming), she orders a KUB.  After the KUB comes back "clear", we talk about our concerns and she agrees to order the CT that I wanted before our "clean-out" discharge earlier in the week.  The report gives us the same findings we always get - kidney stone.  Nothing new.  The resident looks at us like, what do you want to do? I told her that admitting us won't bump up the surgery to have the stone removed.  Been there, done that.  It's 1am and I just want to get home.  Of course, we need an ambulance ride home.  I can only imagine what this evening just cost our insurance company.  We get home around 2am and I pump another dose of Lortab into Jack and just hope he will get some sleep.  Then I think about what just transpired and I'm not happy.  Why didn't they do any blood work, get a chest x-ray or run any other tests?  I'm more mad at myself for not asking "why" when we were at the hospital.

Jack's Sunday pretty much matched his Saturday, except by Sunday afternoon, I could tell his pain was unbearable and I couldn't stand to watch him suffer any more. I decided to call PCH and find out who was on call for urology, hoping it would be Jack's urologist because I needed to hear from him whether or not he thought it was the stone causing Jack all this pain.  I felt like the stone was a red herring and everyone jumped to that as the source of the pain because it was an easy find.  Thankfully, Jack's urologist was on call.   He called right back, said he'd take a look at the CT and KUB that were just done and compare to the previous ones and call me back.  About an hour later, he called and said that the stone looked stable and he didn't think it was the source of the pain.  We needed to take him back in.  Two trips to the ER in a 24 hour period - you know I had to be worried to agree to that.  The urologist called the ER and gave them a heads-up and he told me not to let them discharge us to home this time.

I was NOT going to take another ambulance ride down to PCH. So, I asked our friends who have one of those big, four door horse trailer pulling trucks if they would drive us down to PCH. We put Jack's wheelchair in the back of the truck and laid Jack down in the back seat with his head on my lap.  And, no, he wasn't seat belted in (nor was I) because there was no way to do it.  It was Sunday evening and the ER was packed. I knew exactly how to get us right back.  We put Jack in his wheelchair and unhooked the oxygen from his vent.  I knew his sats would drop pretty quickly (but also knew we were steps away from the ER doors and an abundance of oxygen).  I rolled Jack through the doors bagging him and his color wasn't looking good. I looked right at them and said "this kid needs oxygen".  They took one look at Jack and back we went and, in a flash, we were surrounded by people.

This time around, they did an array of tests and the plan was to admit him.  I told them I wanted to be admitted to the PICU.  The ER doctor said he didn't know if that was possible.  I made it clear that the PICU was the only place I was going to go (and knew that if I needed to, I'd get "my people" to talk to "his people" and make it happen).  They got Jack a bed in the PICU.  No need to get the "peoples" involved. Yay!

Are you still with me?

The entire time we are in the ER, Jack is clearly in extreme pain.  He is grimacing, his heart rate and blood pressure are high and, despite being on a vent, he is taking really shallow, short breaths.  I have never in my life seen Jack in this much pain and it was relentless.  They got him settled in the PICU, but hadn't yet done anything to address his pain.  I forced myself to call the Intensivist into Jack's room when he walked by and asked him if we could talk about code status.  In all of Jack's hospital admissions, we have never thought about or brought up the issue of whether Jack was a full code (which, made him a full code).  But, it's something Mark and I have been discussing and we've made certain decisions about how far we want them to go if Jack ever codes.  Articulating our wishes for the very first time was extremely difficult.

We got to the PICU around 9pm and it had been since at least 3pm that Jack had been suffering immensely with pain.  Something had to be done now.  They started off giving him Tylenol, which did not make me happy because I could do that at home.  I asked them if they expected him to continue on like this through the night?  It was unbearable for me to watch and, quite frankly, had me in tears.  They transferred Jack over to the hospital vent and gave him some morphine.  They also checked his blood gases and his CO2 came back at over 100! (normal is 30-40s.)  At this point, they significantly increased the vent support and around 2am, Jack finally fell asleep.  Last night was by far, one of the most brutal nights for both me and Jack since he was born.  I couldn't sleep and have yet to sleep because the stress was so intense.

So that's how we got here and here is what we know based on my conversations with a very knowledgeable PICU Intensivist:  Jack has a significant urinary tract infection and has probably had it for months. The urinary tract infection causes pain and slows down the GI tract - which is why Jack is having issues with constipation/impaction.  The constipation/impaction causes pain.  The pain from the UTI and inflamed GI tract results in suppressed breathing.  In other words, the pain is so bad, Jack is essentially holding his breath to get through it.  The suppressed breathing caused elevated CO2 and is also why Jack needed so much bagging.  This all makes sense to me and explains why even though Jack would get "cleaned out", a week later he would be full of stool again - because his gut has slowed down and is not moving things through.  The Intensivist was the first person who was able to put all the pieces of the puzzle together and explain how everything going on with Jack was interrelated.  As he told me, the specialists only focus on their area of expertise, while he focuses on the entire child and all that is going on when making his assessment.  His approach was very logical.

We now have a PLAN that makes sense to me.  Treat UTI + stay on top of pain before it gets out of hand (with non-narcotic pain meds) + help move things through GI tract (with Miralax and laxatives) = normal breathing while we wait for surgery to remove the kidney stone and find out why the stones are forming so we can prevent them from coming back.

Jack is still having periods of pain and is not tolerating any food in his stomach yet.  We need to get the UTI under control and, as of now he is on a broad spectrum antibiotic until the culture comes back and gives them the sensitivities.  They are weaning down the vent settings because now he is over ventilated (his CO2 was in the 20s), but he is still on the hospital vent.  They are giving him IV Toradol  on a regular basis to deal with pain. He'll need to stay on antibiotics prophylactically to prevent a recurring UTI until he has surgery to remove the stone (or, maybe even longer).  I'm guessing we are here at least through Wednesday.  I'm still hoping we can make our trip to California over Labor Day weekend for the Disney 1/2 and mini-family vacation.  If we can get Jack comfortable, there really is no reason he wouldn't tolerate the trip. In theory, he should feel better than he has in a long time.

It's now 1:30 am on Tuesday and I've been awake for too long - I am fading fast.  Hopefully, this amount of detail was worthwhile and digestible.  Summing up Jack in a few paragraphs is impossible.  Thanks for checking in, thanks for reading and thanks for caring about my sweet Jack!  We love you all.

As Expected

As I expected, the GI doctor wasn't going to fit Jack in his schedule, so off to the ER we went after I finished up a couple of appointments Thursday morning at work.  I told the ER docs to look at Tuesday's CT scan that was in the system and that we were here to be admitted to get the issue resolved.  I think the ER Attending spent all of 10 seconds in Jack's room (and will no doubt bill us $1,000 for his services) and we were a pretty quick admit to the floor.  They started the same routine they did last time and Jack pretty much had the same results as last time.  I went head-to-head with the Attending (Hospitalist) on the floor because I wanted a CT to confirm that this time Jack was cleaned out. The Attending took the position that because it's been a month since Jack's last admission, this was a new episode and that as long as the KUB showed he was cleaned out, that was good enough. However, because I persisted, he called in the GI doc to back him up and I asked the urologist to back me up.  (As a side note, the Attending told me that Jack's GI  doc was a friend of his, so he called him and asked him to come talk to me.  I had to bite my lip not to say how considerate it is of the GI doc come to talk to me about HIS own patient just because the Attending asked him to.  At PCH, the GI docs don't follow their patients when they are admitted, they turn the care over to the Hospitalists.  On the other hand, the urologist was there because he heard Jack got admitted, so he stopped by to check on him and talk with me. This, even though Jack wasn't admitted for a urologic issue.)  In the end, we both compromised. I didn't get my CT, but they did do something called a Gastrografin enema in radiology which, they assured me, showed that Jack was all cleaned out.  I can tell you as I sit here today, I'm skeptical.  Trust me, you don't want all the details of bowel clean-outs, but based on the results I saw, it's simply not logical that all the impacted stool cleared from Jack's bowel.  One of us is wrong and I'm just hoping it's not them because Jack will be the one suffering the consequences.  Time will tell ... once again.  Jack was discharged 24 hours after he was admitted.

Jack's urologist got us in to see a new nephrologist in the group.  When I looked her up, I saw she did her residency at St. Louis Children's Hospital.  I already like her! :)  We are scheduled to see her mid-September.

We also have Jack's next surgery for the kidney stone removal on the books.  Originally, we talked about having it done the first week in September to give Jack time to recover before our trip to St. Louis. But, I really want to get a second opinion from the St. Louis urologist, so I asked our urologist here if he thought it would be a problem waiting until we got back from St. Louis for the surgery. He  didn't think it would be a problem because the stone isn't blocking anything.  We are on the schedule for the third week in October for the surgery.  After my experience this time on the floor and dealing with a condescending Hospitalist, I reminded the urologist that I again wanted Jack to go to the PICU following surgery, not the floor.  He agreed.  I absolutely will not deal, post-op, with physicians who are on power trips and, for some reason, there seem to be an abundance of them on the floor.

It's been an absolutely crazy year with all these hospital admissions.  I feel like I did Jack's first year of life when he bounced in and out of the hospital many times and no one could seem to just fix the problems that kept landing us there.  You'd think by now I'd accept that doctors don't have all the answers and they can't fix all the problems - especially when it comes to Jack.  It's still beyond frustrating at times.

I'm just hoping the next few weeks are calm.  In two weeks, I'll be joining Team Cure CMD for another half marathon. This time it's the Disneyland half.  We are all going over and we'll spend a few days at Disney after the race.  If nothing else, Jack will ride Small World (at least 10 times with me, hehe) because I know that ride is wheelchair accessible and I know he'll love it!

That's the update from here.  I'll leave you with a few pictures from our stay at Phoenix Children's.

Looking out the window of Jack's room at sunset.  

(iPhone camera with an HDR filter)

The next evening - looking to the Northeast out a window on the 6th floor

Jack happy to be bailing from the hospital

CT Scan Update

The urologist called me today regarding the CT scan.  Where do I begin?

First we talked about the appointment with the nephrologist yesterday and I shared with him that I didn't think the guy was a good match for me or Jack and told him why.  I asked whether it was possible to switch doctors within the group and told him who our pulmonologist recommended.  He said that it is not a problem at all, that it happens and that it's okay to say that it's not a good fit.  The guy our pulmonologist recommended is also the same guy the urologist has spoken with in the past regarding Jack.

We then talked about the kidney stone, which has gotten larger since the CT in June. It is now 1.7 x 1.6 cm in size.  He discussed all the options for treating the stone, but based on its size, he suggests the same procedure he had last time, the percutaneous nephrolithotomy (another 5-day minimum hospital stay).   I told him we were going to St. Louis in October, so if we are going to have this done, it needs to be done soon or we'd have to wait until we got back from St. Louis because we don't want to travel with Jack right after surgery. (I didn't share that I might just wait until after we see the St. Louis urologist to make a decision.)

Finally, he said that the CT showed that Jack is still impacted with stool!  He said he measured the amount of stool and there is 6-7cm of stool in the colon.  It's near the rectum and it's pushing on his bladder  - which explains why Jack doesn't tolerate his wheelchair. When he sits, he hurts and it's reflected in his sats (low) and his heart rate (high). We knew back in July after the inpatient "go-lightly" treatment that the stool was not out - regardless of what the KUB supposedly showed.  It was obvious to us that the issue was not resolved, but x-rays don't lie, right? (wrong!)

After we talked through all the above issues, the urologist said (1) he would call the other nephrologist and see if he will see Jack asap; (2) he would call one of the general surgeons regarding the bowel issue because at this point, he said, it's more than likely a surgical issue, not a GI issue; and (3) he would check his schedule and see if he can get Jack's surgery scheduled within the next three weeks.

I am now sick to my stomach.  My heart just aches for Jack and all that he has to put up with because he can't tell us how much he hurts.

A half hour after the urologist first called me, he called again to let me know he talked with the other nephrologist and, unfortunately, the guy is having surgery of his own tomorrow and will be out for two months. But, he did recommend a couple of other doctors in the group who would be aggressive in dealing with Jack's issues. The urologist said he will call tomorrow and see if he could get us in to see one of them.  He also said that he got ahold of one of the general surgeons who was able to pull up Jack's CT. The surgeon told him that it's bad, but not the worst he's seen.  He suggested a couple of things from doing mineral oil enemas to having GI do a colonoscopy.  I told the urologist that at this point I am not wasting time dealing with enemas. This needs to get resolved now and that I want the colonoscopy done asap.  The challenge is getting GI to see Jack.  Based on my previous experience with them, they don't really give a rip if you have an emergent issue, they will not fit you in their schedule.  The urologist did say he would give them a call, but he doesn't know if it will help.

My plan is to call the GI first thing in the morning and ask them to let the GI doc who saw Jack in July know what is going on and ask him to please review the CT.  Let him know that this needs to be dealt with now and that, based on the recommendation from the surgeon, I would like a colonoscopy to be scheduled asap.  I will let them know that I need to know what the GI says by noon because if he refuses to help us then I'll have to go with Plan B.  Plan B is to take Jack to the ER and get him admitted for a colonoscopy via the ER.  I'm fully prepared to leave work tomorrow afternoon and head to the ER because I absolutely refuse to allow Jack to suffer with this any longer.  I fully expect for GI to not help us on an outpatient basis, but one can always hope for the unexpected.

Kuddos to our urologist who has gone above and beyond by calling the nephrologist and the general surgeon to try and get Jack some help.  He's a great guy who really does care - which makes me feel a little guilty about considering having all this dealt with in St. Louis.  But, I suspect if we end up going that route he would understand.

I just want to get the GI issue dealt with first and then make a decision regarding the kidney stone.  You know, most people hear Jack has a kidney stone and they think no big deal. But, this is a big deal.  It's not the kind of stone that will pass. It requires a fairly major surgery to get it out and for a kid as compromised as Jack - surgery is a big deal on so many levels (not the least of which is the avoidance of breaking his bones in the process).

In any event, I think I've rambled on enough.  The news from the urologist has me overwhelmed, mostly because I'm already overwhelmed with work deadlines and with every day life.  I think I may need more than a few drinks to get me through the next few weeks (months) - a lot of chocolate is also in order.

Wish me luck tomorrow - it should prove to be a challenging day to get people to think outside the box to get Jack the help he needs.  I'll have my "Kindness" Touchstone held firmly in my grip to remind me to be firm, but kind.

Stay tuned...

And You Wonder Why I Drink?

I don't like to whine.  But, I left the house at 7:45am this morning and finished up with all of Jack's appointments at 5:15pm and it's freaking 115 degrees outside.  So, if this sounds whiney, blame it on the heat.

We saw the nephrologist today.  I didn't have high expectations and I was not disappointed.  The doctor was nice enough, but I left the appointment without having any confidence in him and the likelihood that he will help us with the "why" and "how do we resolve the problem" of the kidney stones.

Let me just take you through my day - because if you are reading this, then you must be interested in the minute details of my day, right?

Our appointment with the nephrologist was at 9:30am. I managed to schedule the CT scan that the urologist ordered for 10:30am.  I was instructed by the radiology scheduler to go to radiology and get registered before our appointment with the nephrologist so that we would be good to go once we arrived. We got on the road early and thank God for the commuter lane, arrived at Phoenix Children's by 8:45am.  When I signed in at the front desk and told them we needed to register for a CT scan with radiology, she looked at her "list" and told me we weren't on the "fast track" registration and that I needed to start with admitting.  Not what I wanted to hear.  Not what I was willing to do.  I informed her that I was told to go to radiology and register and I was not going to go to admitting.  She didn't argue with me. It is never my intention to be obnoxious, but darnit! I don't have the time or the energy to mess around doing things that I shouldn't have to do and I was not going to waste 20 minutes sitting in admitting to then go to radiology, especially because they have all our insurance information from the  multiple times we've been to this hospital in the last 5 months!  We were able to get registered at radiology and then head over to a different building to see the nephrologist.

From the get go, it was clear that the nephrologist was not comfortable with Jack. I had received a copy of the lab report from Jack's urologist, so I knew what all his numbers were and thanks to PubMed, I had a list of questions and ideas of what I was hoping the nephrologist might want to investigate as far as what might be causing the high calcium oxalate and low citrate.  I went in with an open mind willing to hear whatever this physician had to say.  Problem is, he didn't have anything particularly enlightening to say.  He discussed the results of the 24-hour urine collection - which I already knew because I had a copy of the report.  He suggested it might be due to his diet - contrary to what Jack's urologist and pulmonologist both said - they said because he is on Pediasure, it is not a dietary issue.  It really isn't worth repeating the play-by-play of the appointment, but I will say that he mentioned that he could put him on a citrate supplement to address with low citrate in his urine (citrate is what helps to keep stones from forming), yet we left his office with no prescription for citrate.  I asked if he might want to do some blood work - which he agreed to (but why did I have to suggest it?) and then he checks a bunch of boxes on the lab form and asks me if there is anything else we might want to check.  I suggested checking his Vitamin D level based on my discussions with Jack's St. Louis neurologist last week and his response was "that's a good one, we were just talking about that last week." Who is the doctor here?!  Really, I have no doubt this doctor is well educated and knows his stuff, but for Jack - he is not the right guy.  We left with no information and no plan.  Maybe when he calls me after he gets the results of his lab work, he'll have a plan.  But, again, I'm not optimistic.

Next stop was radiology and the CT scan. We got right in, right out and it was uneventful.

After CT, it was off to the lab.  Maybe I'm expecting too much, but PCH just built a brand spanking new Children's Hospital and you'd think along with the new clinics, facilities and offices, they would have nice big signs that direct you to where you need to go.  We were told the lab was on the second floor next to the clinic suites.  We arrived on the second floor and there was no sign that said outpatient lab anywhere.  I asked at one of the clinics where the lab was and was told "next to the bathrooms".  Nice.  We went around the corner to the bathrooms and saw a door with a small sign next to it that said "blood draws".  Right! Of course, the outpatient lab should be a closed door next to the bathrooms with a tiny sign that makes reference to blood.

The lab tech asks me where are they usually able to get a good blood draw on Jack.  I tell her that it usually takes the IV team to get a blood draw, but the best place to look are his feet.  To which she informs me that she can't draw blood from his feet that only the IV team can and if they can't get blood and need the IV team, then we have to get an order from the doctor who ordered the blood draw to request the IV team.  ARE YOU KIDDING ME? This is a Children's Hospital, right?

I won't even expand on my thoughts about the whole blood draw thing because it wouldn't be nice.  Fortunately, they were able to get blood from Jack's hand.  It took forever for him to bleed enough to fill all the vials, but they got what they needed ... I hope.

It's now noon and we are finally done at PCH. After I pull into the driveway at home, I hear Kristi say, "we have a problem".  I look at Jack and he is pale/gray and looking quite out of it.  #$%@!  I tell Kristi we need to bag him.  I grab the ambu bag and Kristi grabs the suction machine.  After a few minutes, we "revive" Jack.  The way our van is set up, Kristi sits in a seat behind Jack, so she can't see him when we are driving.  Not a good set up, obviously.  We don't travel with the pulse-ox and it's never been a problem, but apparently, we need to keep a better eye on Jack when we are driving around town with him.

We were home a few hours and then back on the road for an appointment with the pulmonolgist - who we were supposed to see in May to follow-up on the change over to the new vent but never did see because we've been dealing with kidney stone issues and hospital admissions and I've already missed a ton of work so there really was no time for a follow-up appointment in my schedule.  But, I like our pulmonologist - he totally gets me and he is so good to Jack. Knowing that we had multiple appointments today, I just bit the bullet and decided to take the day off and fit the pulmonologist appointment in.  I brought him up to date on the kidney stone saga and my thoughts on the appointment with the nephrologist today. He was understanding and supportive and gave me some ideas and also gave me the name of another nephrologist in the group we might want to see. He also suggested that we might just want to wait and have this dealt with in St. Louis.  I told him the problem is that I know too much. His response was that I can't ever know too much, that I have to stay on top of things to be the best advocate for Jack.  Like I said, he totally gets it.

So that was my day in not-so-much-a-nutshell.  I'm frustrated.  I want answers and I want a resolution to the kidney stone saga.  Is that asking too much?  I'll wait to hear from the urologist regarding what the CT shows and then I'll forward all the information I have to the St. Louis urologist and depending on what he says, we'll have to make the decision as to whether this issue will be resolved in St. Louis or Phoenix.  It's a difficult decision because this appears to be a chronic, ongoing issue.  Not something that is really conducive to appointments with doctors 1500 miles away.

And, my friends, you wonder why I drink?

The Saga Continues

I talked to the urologist today regarding the report from the lab in Chicago that analyzed Jack's urine.  According to the report, Jack has "extremely" high calcium in his urine, low citrate and lower than normal volume for a 24 hour period.  The question is "why?" That's where the nephrologist comes in.  For some reason, I'm not all that confident that we will get any answers to the "why" other than, "we just see this sometimes" and then they'll set about trying to treat it.  Call me a pessimist.  You'd be right.

We see the nephrologist next week.

Removal of the new stone that has formed still remains an issue.  The end of June, the stone was already 1.5-2cm.  Keep in mind that the majority of stones that send people screaming to their local emergency room are measured in terms of mm.  We have to get yet another CT scan to see just how big the stone has grown and then the urologist suggest going in again via the percutaneous nephrolithotomy to remove the stone.  Another big surgery, another 5-day hospital stay.  The urologist mentioned that we could try lithotripsy, but because of its size, it would require multiple treatments and he's not sure it would break up the entire thing.  I agree that the more extensive procedure is the way to go because I just want the thing out all at once.

More than one doctor has told me that the stone shouldn't be hurting Jack because it's not trying to pass through anything, it's just sitting there in the kidney.  I'm not convinced.  Our bodies do not like foreign objects in them and while Jack may not be in excruciating pain at the moment, I can tell he doesn't feel well.  He hasn't felt well for the majority of this year, and it's breaking my heart.

In the scheme of things, I realize things could be much worse than a kidney stone.  But, the fact is - there is very little I can do as Jack's mom to make a difference in his life given his disease.  I can't stop the disease from progressing, I can't do anything to help him walk, talk, eat or breath on his own.  The only thing I can do - and the one promise I made to him six years ago after his spinal fusion surgery, was that I would do everything in my power to make sure he doesn't hurt. Seeing what Jack went through with the spinal fusion surgery brought me to my knees and I vowed to protect him from having to endure that kind of pain ever again.  It's why I'm wicked protective when I turn over his care to anyone else.  I've not been successful in keeping my promise this last year and it makes me sad.

I hate that Jack has to endure another procedure and, to be honest, I'm losing confidence in having this dealt with locally.  As his urologist reminded me today, things didn't go as planned last time because they perforated his kidney.  Shit happens, I get that. But, what if it happens again? I'm once again struggling with whether to have this dealt with here or in St. Louis.  I hope to talk with the St. Louis urologist before our appointment in October.  Depending on what he says, we might just wait until we are in St. Louis to do anything about the stone.  I'll just have to take my cues from Jack as to when, where and how we move forward.

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Speaking of Jack's spinal fusion surgery, it's hard to believe that it's been six years since the surgery (on July 28th).  More unbelievable is that I have been blogging for six years.  That's crazy!  And some of you have been reading for all six of those years!  I never intended to become a blogger, but once I started, I found that sharing my experiences and my thoughts was both cathartic and a great way to meet some amazing people. It's been a ride and I'm thankful for all of you who have ridden alongside us, offering your unending love and support over the years.

A reminder of what Jack went through six years ago and why I made my promise to him -

How's that for some hardware in your back?

As straight as they could get him given the quality of his bones

This face pretty much says it all

________________________________________

And, speaking of reminders, here's another one .... For The Record  

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.