Catching You All Up

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

Since my last post,

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

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

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

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

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

Jack was our caddy. 

At the end of our game

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

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

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

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

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

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

Thanks for checking in ... thanks for caring. 

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*IRL = in real life 

You've Come A Long Way Baby

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

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

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

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

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

Ding Dong The Stone Is Gone

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

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


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

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

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

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

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

Out and About

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

Smiles come easy to these two!

Happy Cinco de Mayo!

Making Progress

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

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

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

Thanks!

The Sib's Perspective

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

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

Answering Your Questions

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

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

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

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

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

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

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

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

Postscript

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

Loading into the car for the ride home.

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

Plan B

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


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


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

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

Have a great weekend!

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

The Kidney Stone Saga

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

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

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

Thanks for checking in.

Quick Update

Surgery is now scheduled for next week.  Tuesday is interventional radiology to have the tube placed in the kidney; Wednesday the urologist does his thing (through the tube that has been placed) to get as much of the stone out as he can; then on Friday, a second look by the urologist to get any remaining stone. Three times going under anesthesia - that makes me nervous. Well, actually, the whole thing makes me nervous. But, it has to be done. Jack, of course, has no idea what is about to hit him. I realize this isn't a major surgery, but with a kid like Jack - there are so many ways things can go wrong. Wish I was in St. Louis for this ... but que sera, sera.

I'm off to St. Louis this morning for the "Go St. Louis" half marathon with Team Cure CMD. I wasn't sure if I was going to make the race, but Jack is stable, I've got nursing set up for the weekend and I figured it would be a good thing for me -- and all the people I'll be encountering next week -- if I pounded the pavement for 13.1 miles and released some of the stress and frustration of the last month! 


I'll update more later ...

For All My Non-Facebook Friends

For all my non-Facebook friends, an update is in order.

Since my last update, I've talked to both the St. Louis urologist and the Phoenix urologist regarding what will be involved in having Jack's kidney stone removed.

Let me step back first at bit.  The week after Jack was discharged, I called the surgery scheduler for the Phoenix urologist and left messages on two separate days.  I received no return phone call.  I then called and left a message with the secretary for the St. Louis urologist whose name I had been given by Jack's neurologist.  Within 10 minutes of leaving a message, I received a return phone call.  I was asked to fax the report I had from Phoenix Children's and she would have the doctor look at it and get back with me.  Two days later, I received a phone call from the head of the urology department at St. Louis Children's.  That is just one of the many examples of why I love SLCH.  After talking with the St. Louis urologist about all that would be involved with having the stone removed, I called the Phoenix urologist office because I also wanted to talk with him about the procedure as well. I did receive a phone call back from the Phoenix urologist - and he was great.  The fact is, Jack doesn't have the kind of kidney stone that can easily be removed or passed.  The process of getting the stone out will involve having a tube inserted into his kidney and then going in through the tube to break up the stone and remove it.  I was told by both urologists that, due to the size of the kidney stone, it will likely take more than one procedure to get the stone out and that Jack would be in the hospital the entire time - a minimum of a 5-day hospital stay.

When I heard that Jack would need to undergo anesthesia several times and an extended hospital stay would be involved, I was pretty convinced St. Louis was best place for him to be.  At SLCH, Jack can get an anesthesiologist who knows him and the care he'd receive on the floor at SLCH would be exponentially better than what I experienced the two days we spent at PCH.  However, the logistics of getting Jack to St. Louis and being away so long with Eric still in school really didn't appeal to me.  Fortunately, one of Jack's former docs was able to put me in contact with a doc at PCH who I was able to talk with about my concerns and what I needed for Jack to have the surgery done there.  So, as of now, we've decided to have the procedure done here in Phoenix - we are just waiting to get on the surgical schedule.  In the meantime, I received a phone call from the St. Louis urologist with a date for the surgery there. It was really difficult to tell them that we decided to stay here.

I received a copy of all the reports from the tests Jack had done when he was at PCH and his CT scan says the following: "Large staghorn calculus is filling the collecting system in the right kidney.  A small calculus is seen more peripherally in the right mid kidney."  I don't know about you, but a stone that is filling the collecting system of the kidney seems like it should justify some sense of urgency in getting Jack on the schedule to get the damn thing out!  If Jack doesn't get on the surgical schedule here soon, we may be heading to St. Louis anyway.

That's the update for now.  Jack is hanging in there and seems to be doing well.  The pain he was experiencing over the last few months must have been primarily due to the infection because since he has been on the antibiotic, he has felt much better.

Thanks for checking in - have a great week!

What a Week...

This is old news for those who follow me on Facebook, but ....

We picked up Jack at Ryan House Monday afternoon around 3pm.  Jack look tired and a bit out of it, but, for the most part, he held up well during our absence.  The simple fact is, there is no place Jack can go that is as good as home.  I struggle with the knowledge that Jack is happiest at home and knowing that it's important for the rest of us to get away from home.  There is no "win-win" situation.

Tuesday, I ran around in the morning getting ready for my CHOC Clinical Grand Rounds - TouchStones of Compassionate Care presentation the next day.  I was flying out to LA that evening because we had to be at the hospital by 8am.  When I went into Jack's room around 2pm, I took one look at his heart rate and face and I knew there was no way I could let whatever was going on, go on for another 24 hours.  I told Kristi to get Jack ready, we were heading to the emergency room.  Now, those who know me know that it takes a LOT for me to agree to go to an ER with Jack.   I simply don't "do" ERs or hospitals.   But, my mommy-gut told me that whatever was going on with Jack was internal.  I was thinking appendix or gall bladder.

When we got to the ER at Phoenix Children's the waiting room was jammed packed and it was 2:30 in afternoon!  I told the woman who was registering us that there was no way I was waiting in the waiting room with Jack, when they were ready for us, we'd be waiting outside.  She showed me to a quiet area near the waiting room instead.  They took Jack back within a half hour and we saw the resident fairly quickly. She was very good, listened to what I had to say and started the process of trying to figure out what was going on.  The first thing they discovered fairly quickly was that Jack had a urinary tract infection.  With that information, they did an x-ray of the stomach and saw a large stone in Jack's kidney. From there, they did an ultrasound of the kidney and determined that he had something called a staghorn kidney stone. They admitted Jack with what I thought was the intention of dealing with the stone.

My experience with the ER at Phoenix Children's was excellent and I was optimistic that I had made the right decision to come to this hospital. (There is another Children's Hospital much closer to my house, but my past few experiences with Jack in their ER and PICU have not been good.)   Jack got to his room around 10pm that night.  We saw the urologist in the morning and he said he was going to order some tests and once he got the results of the test, we'd know more about what needed to be done.  This was the beginning of the end of my good experience with Phoenix Children's.  Actually, almost all the people I dealt with were wonderful and caring and treated Jack and me well.  The problem was not the people, it was the delivery of health care.  The tests were ordered Tuesday morning.  I was later informed that Jack couldn't get on the schedule for two of the tests until Thursday and he couldn't get on the schedule for the third test until Friday.  So, we were to sit in the hospital and wait for three freaking days to have all the tests done ... and we were inpatient!  I couldn't believe it.  The general peds attending's comment to me was "this is a big hospital with lots of kids."  And your point is?  Let's just say, she was not the brightest light in my book.  I was NOT happy and was not shy about sharing with anyone who entered the room how insane it was that a child who is inpatient had to wait three days to have relatively routine tests done.  I then found out that after all the tests were done, they wouldn't even be able to get Jack on the schedule to have the kidney stone removed for 2 to 3 WEEKS! Is that not insane?  By Thursday, I was ready to just leave and come back for the final test as an out-patient.  Ultimately, they got enough information from the two tests they did on Thursday that they didn't need the test scheduled for Friday. So, they discharged Jack on Thursday afternoon.

The kind of kidney stone Jack has can cause damage to the kidney and the loss of a kidney is a real risk.  The test showed that, as of now, the stone is not blocking the flow of urine and the kidney is not damaged.  So, we wait to get on the surgery schedule because it is not the kind of kidney stone that can be passed - it has to be removed.  To put things in perspective, most kidney stones are measured in terms of mm.  Jack's kidney stone measured 5cm x 1.4cm x 1.9cm.  I'm fairly certain that at any of the top Children's Hospitals, including St. Louis Children's Hospital, Jack would have been admitted and the stone would have been removed before he was discharged.

In any event, we are home - Jack's pain is manageable and we wait to find out when Jack can get on the schedule.  Tomorrow, I get on the phone and do what I can to speed up the process.  I also call the urologist's office in St. Louis and find out how they would have handled this issue if Jack was in St. Louis and what do they think about having to wait 2-3 weeks to have the stone removed.

Jack enjoying some time with the hospital therapy dog. :)

Adding to the crappiness of the week, I missed participating in the presentation of the TouchStones program at CHOC.  I heard that it was well received. Another really cool thing I heard was that the stones were placed in separate bins (Kindness, Compassion and Care) and the doctors each got to pick which stone they wanted.  One doctor said he was okay with "caring", but needed to be more compassionate, so he chose the "compassion" stone.  Another doctor picked a stone, left and then came back and exchanged it for another stone.  Point being - that it really got the doctors to reflect about what areas they personally needed to work on.  How cool is that?  Who knows where the CHOC roll-out will lead us, but I'm excited about the possibilities.

I can now share the video, so here you go:



Onward my friends ....

I Think It's Time for A Blog Post ...

I feel bad that it's been so long since I've posted.  It's not for lack of anything going on, that's for sure.  Let's see, where did I leave off?

Eric's birthday, I believe.

I forced asked Eric to let me take his "10th birthday" pictures.  He wasn't thrilled with the idea, but he did his best to cooperate.  He prefers to not wear his glasses - he says he looks like a "nerd" with glasses.   He's now at the age where he's concerned with how he looks and he has more input into what he wears and how his hair looks.  He cracks me up.  He doesn't like the military-style hair cut that I prefer -- short sides and back.  He wants his hair to be longer because, you know, "everyone" has their hair long.  I'll concede on not having to have super short hair, but what you see below, is as long as it's going to get!

My handsome 10 year old

The birthday party was a success and Eric's friends donated over $100 for Ryan House.  Everyone had a great time.  I heard one kid say that it was "the best birthday party" he has ever been to.  Now, I seriously doubt that, but it's nice to know the kids had fun.

The Chair of Honor

a crazy group of boys

A few days after Eric's birthday, we headed to California for some R&R.  Jack was left in the loving care of the staff at Ryan House.  I was extremely nervous about leaving Jack at Ryan House this time, not because I was worried about the care Jack would receive while we were out of town, but because something is going on with Jack and he's not been feeling well for awhile now.  With a non-communicative child, it's so incredibly difficult and frustrating to try and figure out what hurts when he can't tell you.  Jack has been having episodes of high heart rate and he acts like something hurts him - based on the expression on his face.  Sometimes his O2 sats are affected, sometimes they are not.  I don't think it has anything to do with the new vent.  I've noticed that the episodes are often triggered after he is fed.  I called his pediatrician and asked him if it might be reflux.  He wants us to get Jack's g-tube site looked at first.  If everything checks out there, then we'll see a GI doc.  My "gut" tells me that whatever is going on has something to do with Jack's gut.  We couldn't get in to see the pediatric surgeon (the doctor who manages the g-tubes in this City) until next week.  In the meantime, Jack's pediatrician prescribed Prevacid and we are giving Jack Motrin on a regular basis - which seems to help with the pain (although, too much Motrin can lead to its own set of GI issues).  The other thing we are doing is slowing down Jack's feeds and not bolusing in as much as we typically do.  He's still having episodes of high heart rate and pain, but we are managing it as best we can until we can get to the bottom of it.  Based on the reports I'm getting from Ryan House staff and my friends who have check on Jack while we are out of town, Jack continues to have his moments of high heart rate and pain, but they are managing it with Motrin.  Jack has also been sleeping more than is typical - and that worries me too.  Overall, though, he has been happy and doing well while we have been gone.  We get back home tomorrow and I'm so anxious to go get him and take him home where I know he is most comfortable.  I just hope we can get some answers soon because I can't take seeing Jack in pain and not knowing why or how I can make it better.

Despite stressing out about Jack, we tried our best to give Eric a fun vacation.  We drove up to Monterey and spent time at the Monterey Aquarium and tried to enjoy the beach.  It's been extremely cold and windy, so our beach-front vacation hasn't exactly gone as planned.  I have enjoyed getting to bed early and being able to sleep in.  I feel rested, but so ready to get home and see Jack.

This picture makes me laugh.  Eric says "I don't even know who Forrest Gump is", but if this isn't the perfect Forrest Gump face, I don't know what is! 

Bubba Gump's Restaurant at Cannery Row - Monterey, CA

At the Monterey Aquarium

Cool sea horses

and jelly fish

Freezing our butts off along the Carmel ocean front

and last but not least ....

Today is Mary's 19th Birthday!  She was not happy that we aren't home to celebrate it with her. But, I hear that my sisters and their families took her out to dinner tonight.  So, I think she still had a good time despite our absence.

Thanks for checking in and have a great week everyone!

Vent Update

I think the words "if it's not broke, don't fix it" might be appropriate when it comes to switching Jack to a new vent.  The transition has been anything but smooth.  We went back to the pulmonologist last Wednesday for Take 2.  This time, we had all necessary pieces (for the most part) for the vent and we kept Jack's mode of ventilation the same as it was on the LTV.  He seemed to do better, although his heart rate was still a little high.  After hanging out at the pulmonologist's office for a few hours, we headed home.  Through the night and the next day, Jack was okay - sats okay, but not himself.  I was ready to throw in the towel and say forget it.  Then, the light went on when I noticed that Jack's breath rate on the vent didn't go above the set rate - which meant the vent was not sensing his own breath and was giving him no support whenever he took his own breath.  Jack's respiratory muscles are so weak that his own breath is very shallow.  The vent should sense when he takes a breath on his own and kick in and give support with the breath (in other words - it should compensate for Jack's shallow breath and blow in enough air to make it a productive breath.)  Imagine taking a breath and not getting any results.  No wonder Jack was stressed out.  I conveyed my observations to the RT at Apria (who has been absolutely WONDERFUL) and someone came out and adjusted the "trigger" mode on the vent and it was instantaneously better.  Jack had a good weekend and seems to be adjusted to the vent now.  His heart rate is still a little bit elevated, but it's hard to say whether it's related to the new vent.  At this point, it's a guessing game which is made more difficult by the fact that the main character can't articulate how he is feeling.

I have to say, I'm disappointed in Jack's pulmonologist. He has not made one phone call since we left his office on Wednesday asking how Jack is doing.  That bothers me - a lot.  This is life support we are talking about, I'd think you'd want to know how your patient is doing.  The doctors in this city never fail to disappoint me.  *sigh*.  That said, as much as I complain about Apria, they have been fabulous with the transition - especially the RT.  I've texted her on her personal cell phone, emailed her and called her relentlessly this last week and she's been more than patient with me.  She truly cares.

Added to the stress of switching Jack to a new vent is knowing that we will be leaving him at Ryan House for six whole days while we head to California for Spring Break.  The timing for making the vent switch wasn't well planned on my part.  I am scared about leaving Jack for that long, but everyone keeps telling me I have to try it - that I won't know if I don't try it.  But, it's so very hard.  Two of Jack's nurses and several of my friends have all agreed to check up on Jack while we are gone, so that makes me feel a little better.

In other news, my "baby" turns 10 years old next week.  Hard to believe that it's been almost ten years since we made the move from St. Louis back home to Arizona.  Eric really wanted a birthday party with his school friends this year.  We agreed, but unlike my super creative friend Susan, I'm not hosting the party at my house.  Nope, I go all out and pay lots of money to some germ infested place where the kids can jump and bounce for an hour and then eat greasy pizza and sugar laden cake.  Lame, I know.  But, Eric did choose the place and he is thrilled, so it's all good.  I even convinced Eric that it would be a good idea to forgo gifts from his friends and, instead, ask everyone to make a donation to Ryan House. Surprisingly, he was perfectly okay with it.  Now, I just have to psych myself up to socialize with parents that I feel so disconnected from.  The party is Sunday.  Wish me luck!

That's the latest and greatest from here. Have a fabulous week my friends.

Jack at IKEA - looking happy (and red-faced)!

All Things New

The new vent trial didn't go so well.  The issue was our DME company didn't show up with all the right pieces and parts for the new vent.  Jack did fine initially, but his heart-rate went into the 160s and pretty much stayed there while on the new vent.  There was clearly something wrong with the set-up, so the decision was made to put him back on his regular vent and try again next week when we have the correct set-up.  You know, because I have nothing else better to do with my time but spend another day at the doctor's office.  Grrrr!  (Time is a precious commodity and I really, really hate wasting it!)   The pulmonologist also changed Jack's mode of ventilation, which, in retrospect, was not a good idea because we should only change one variable at a time so if there is a problem, we only have one source to look to.  We don't know how much of Jack's stress yesterday was attributable to the vent and how much was attributable to the change in mode of ventilation.

And, I just have to share something that really gets under my skin.  After we got home, I called Jack's pulmonologist to talk to him about how Jack was doing and he says to me "you might want to check his trach to make sure he doesn't have a plug".  Really? REALLY?  I've only been doing this for thirteen years, I think I know when my child's trach is plugged and when it's not.  Sheesh!  (I really do like our pulmonologist, but this comment didn't earn him any points, that's for sure.)

In any event, next week is "Take 2" and I'm optimistic that it will be much better the next time around.

Here is a picture taken less than an hour into the vent change -- Jack was still happy at this point.  My hand is on the new Trilogy vent.

After a long and stressful day at the doctor's office, we came home to this:

Our new puppy - Hamilton

I don't think I mentioned that we had to return the dog we adopted around Christmas to the shelter because of all his health issues.  The kids have been searching for a new dog ever since.  We've never had a puppy and I never wanted a puppy - for obvious reasons.  My hands are already full, I cannot handle all the work (and mess) that goes with training a puppy.   I was overruled.  Mark and the kids saw "Hamilton" at a Petsmart adoption event last weekend and they just had to have him.  I will admit, he is really cute and looks so much like our dog Rylie.

I'm not sure why it is that change is so exhausting to me anymore.  I think I'm just flat.out.tired after thirteen years of chronic stress.  I knew going in that switching Jack's means of life support wasn't like getting a new wheelchair - this is serious stuff.  Sometimes you forget just how serious until you start messing with something that isn't broken.  From what I'm hearing from parents whose kids have switched to the Trilogy - they love it, so I know getting the new vent is the right decision.

As for the new puppy  - well, sometimes you just have to go with the flow.  I didn't really want another dog, let alone a puppy. But, everyone else in this house is happy, so be it.

I hope this post makes sense.  I'm exhausted and falling asleep as I type.  Thanks for checking in my friends.

After all these years ...

After all these years, I still find it very difficult to let people in, to open up to "in real life" strangers and let them know that my life is just a little bit different from most.  I have no problem sharing the details of this life or my innermost thoughts and feelings when I'm on this side of the computer and I don't have to actually face the people I'm sharing with.  I find it extremely uncomfortable to share the fact that I have a disabled child with people I encounter in person, let alone share the details of this life. 

However, there are times where I have to step out of hiding and let people know that I need help and explain why.  Recent case in point:  I received an email last week from the parent assistant for Eric's class asking if any kids would be interested in joining a writing club that will meet before school one day a week.  Eric would love this as he is such a creative thinker and writer.  Problem is, Mark is at work early in the morning and I can't leave the house until 8am when Jack's nurse shows up.  To participate in the writer's club, Eric would have to leave the house around 7:45am.  I can't get him there.  So, I had to suck it up and share just enough about my life to let this mom know that yes, Eric was interested, but I couldn't get him there and ask her if there is anyone who would be able to pick him up in the morning and take him to school.  It's times like this, when I can't even get my kid to school a half hour early that I really resent the restrictions this life places on our family.

Of course, the mom was very understanding and sent out an email asking if anyone could help give Eric a ride in the morning.  Within a few hours, two people volunteered.  I, of all people, should know that people like to help.  Heck, I like to help - that is why I founded The Willow Tree Foundation.  It's just much easier for me to give than receive.  

The mom also told me that Eric has talked about Jack with her and some of the kids in his class.  She told me he seemed sad when he was talking about Jack.  Break.my.heart.  I guess it's a good thing I have Eric in Sibshop.

Eric also shared with me this weekend that his teacher "forced" him to talk about Jack.  Eric is like his mother, he doesn't like to be the center of attention.  I asked Eric what he shared and he said he told his teacher that Jack has muscular dystrophy, a trach, a machine that breathes for him and that he can't talk or eat.  Guess that pretty much sums it up! I asked Eric if the conversation was just between him and his teacher and he said, no - that he was asked about his brother in front of the entire class.  I don't know what the circumstances were or why the topic came up, but I give Eric a lot of credit for talking about Jack in front of his entire class. 

***********************

I spent most of the weekend drafting a "Management of a Ventilator Dependent Child" parent perspective essay for a Cure CMD International Webinar.  Not an easy thing to do. It's difficult to take thirteen years of experience and decide what is important to share and putting so many thoughts into an organized writing.  But, I finished around 2am this morning.  

Next thing I have to work on is my introduction speech for CHOC Grand Rounds next month when we roll out the TouchStones program.  Scary and exciting at the same time.  I'm anything but a public speaker, but, then again, I never thought I'd ever find myself suctioning a trach and adjusting vent settings either.  :)

**********************

Jack gets the new vent on Wednesday.  I'll be sure and let you know how it goes.  

Thanks for checking in.

New Vent - No Hospital Admit

First thing Monday morning, I sent an email to Jack's pulmonologist that said:

Dr. P:
I don't know if you've had a chance to talk with Apria yet regarding switching Jack over to the Trilogy, but can you remind them that the Trilogy will be the fourth vent Jack  has been on since he was 7 months old and we've never had a hospital admission when he's changed vents.  I think we are all capable of figuring it out in your office.  


I received a phone call on Thursday from Jack's pulmonologist letting me know that we will be switching Jack over to the new vent in his office.   


Score! :)

I shared this information in an email with my favorite (former) doc of Jack's. His response:

I wish I could clone you. We have so many patients here who could be transitioned and managed with chronic ventilatory needs without a PICU admission. I love that you are such a creative advocate for Jack.

It's nice to know that I've still got it in me - the whole advocating thing.  Sometimes I wonder.  I'm not sure if it's that I don't have the same need to advocate for Jack like I had in the beginning or whether it's just that I don't have the energy.  But, I'll admit, it feels good to know that when I do advocate for Jack, it's appropriate and successful.

Puts a smile on my face going into a busy weekend.

Eric has swimming and Sibshop tomorrow and Mark and I are actually going to a grown-up only dinner at a friend's house.  It's unusual for us to even get an invite, let alone find nursing coverage on a Saturday evening.

Score again!

Have a great weekend my friends!

Just Living Life

Just a quick update because I want to be better at keeping the blog updated, but also want to stick to my commitment to try and get to bed by 10pm.  I'm really trying to get more sleep because the last 13 years have really caught up with me.

As I keep up with friends on Facebook and my IRL friends, I realize how fortunate we have been.  So many people I know are bouncing in and out of the hospital with their kids for one issue or another.  There's nothing more stressful than a sick or hurting child.  For us, it's been a very long time since Jack was in the hospital and at least a couple of years since he's been sick.  I know how remarkable that is and it's not something I take for granted.  I'm not sure why we've been so "lucky" as to avoid sickness and the hospital, but I do know that being able to "just live life" is a blessing to be appreciated.

As part of our just living life ...

Eric has made great strides in his swimming.  He went from a kid who had to be strong-armed into the pool to a kid who is now mastering all four strokes and well on his way to the advanced stroke/swim team in a matter of seven months.  Eric has the perfect swimmer's body - lean and long.  He looks really good in the water.

Saturday morning after swim class 

Multi-tasking tube feeding and suctioning at the same time (picture courtesy of Eric)

I've even had the time to fit in a home improvement project.  I try to accomplish one project a year.  This year, I painted the upstairs hallway wall and created a picture wall.

As for the girls ...

Hilary has established a good client base by doing some freelance work. She has networked with people who know her genre of art and she's had a lot of requests for her drawings.  She's doing quite well profit-wise, especially given that she doesn't have any overhead and she has a free place to live. :)

Mary is busy with school and wishing she could come home more often then she's been able to.  She doesn't have a car at school and we can't be making the drive up north every weekend to bring her home.  I think she's enjoying college for the most part (but, realizing that home isn't such a bad place to be!)

The new ventilator that Jack will be switching over to is in and the next step is making the switch. Jack's pulmonologist wants to do it in his office, Apria (our medical equipment company) wants the change to be made in a hospital.  I don't understand why a hospital setting is necessary, especially given our experience with vents.  Jack is on his third different vent since 1999 and he never needed a hospital stay when we switched to a new vent in the past.  I've decided that I'm not going to get too stressed out about it - if we have to go inpatient we will.  I'm learning to go with the flow a little more because the stress of fighting the system is just not worth it.

I've also been asked to write another "perspective" for the Cure CMD website.  They want me to share my perspective in caring for a child with respiratory issues. What it's like to care for a child with a trach and vent. I think I should break it down into two parts - the technical part (the equipment and care involved) and the emotional part (in caring for a medically fragile child).  I appreciate the opportunity to share my experiences (after all, what good is experience if you can't share it?) and I enjoy writing.  I only wish I had more time to focus on my writing.

I also have a copy of the video that we put together at CHOC.  It's really humbling to listen to other moms read my words from my "Dear Future Physician" letter and know that they too can relate to the message conveyed by those words.  I will share the video as soon as I find out if it's okay to share before it's shown at CHOC.  (which is scheduled sometime this month.)

That's all I've got for now.  It's past 10pm and I have to be up bright and early to start week three of "Couch to 5K".  If I'm successful, by the end of week 8, I'll be able to run a 5K - with the hope that I can  progress from there in preparation for the Disneyland half marathon in September. I'm also contemplating participating in the St. Louis half in April - a Cure CMD team was recently put together for that race.  Not sure yet on the St. Louis race - a lot will depend on airfares. They are ridiculously high right now.

Okay, I'm really done now!  Love ya!

Hope

HOPE

As defined by Dictionary.com:

Hope: the feeling that what is wanted can be had or that events will turn out for the best.

As written by Barbara Gill in “Changed by a Child”:

Hope is the thing that is willing to take a chance on the future. Hope is the capacity to see something on the horizon that we are willing to move toward. If our hope gets us from today to tomorrow, and in that new day we are ready or able to deal with something we thought we couldn’t face, then hope has done its job.

To quote my friend Christy:

 “Hope is a funny thing”. 

________________________

As parents, we all have hopes and dreams for our children.  As the parent of a medically complex and disabled child, hope is a powerful thing. It is what drives us, carries us and comforts us in the darkest of times. 

In the beginning of Jack’s journey, there was so much hope. Despite being a 33- weeker, Jack’s course was uncomplicated and he came home six weeks after he was born - eating and breathing on his own and requiring only a small amount of supplemental oxygen.  My hope was simply for Jack to wean off the oxygen. Shortly after he came home, Jack suffered an apneic event (he stopped breathing) and ended up in the PICU.  It was discovered that Jack was born with a cardiac anomaly – a vascular ring that was compressing his airway and esophagus.  Jack had surgery to divide the vascular ring without complication and when he was discharged from the PICU following surgery, I don’t think anyone expected to ever see us again. I hoped the worst was behind us. Two days after discharge, Jack was readmitted to the PICU in respiratory distress. Jack was ultimately intubated and over the course of three months, multiple attempts were made to extubate him.  Each attempt at extubation, I hoped with all my heart that he would make it off the vent so that we could just go home. To no avail.  Five months after his first PICU admission, Jack was discharged sporting a trach, ventilator, g-tube and no diagnosis, but with the hope (and expectation) of everyone involved that all the medical intervention was temporary.  When I signed off consenting to the trach, I honestly never contemplated that it would be permanent.  In the first months of his life, Jack did not present as a child with a progressive neuromuscular disease.  In fact, engraved in my memory is a comment made by a neurology fellow during rounds one morning.  He looked at Jack and said, “Here is a neurologically healthy child.”

From the moment of Jack’s discharge, my mission – and hope – was to get rid of it all.  Occupational, physical and speech therapists invaded our house daily to work with Jack to get him to sit independently, eat by mouth and communicate.  I pushed Jack relentlessly and mercilessly.  Months passed and the first year quickly faded into the second year. Jack made little progress on all fronts.  I was forced to temper my hopes.  I went from hoping Jack would get rid of it all to just hoping he would get rid of the ventilator.  Couldn’t he at least just get off the damn vent? I literally begged Jack to breathe on his own.

When Jack was three years old, one of his doctors gently suggested that I “needed to make peace with the ventilator.” It was clear to everyone by then that Jack had more going on than initially thought. We still didn’t have a diagnosis, primarily because I refused to follow-up with Jack’s neurologist after Jack’s discharge from the hospital.  Whatever she had to say, I wasn’t prepared to hear it at that time. Letting go of the hope that Jack would be able to live without the ventilator was by far one of the most difficult things I’ve ever had to do.  It was the ultimate defeat for me because it was what I had so fervently hoped for, for so many years.  Losing the g-tube and wheelchair were secondary hopes that could be tackled after we got past the ventilator.  When Jack couldn’t get past the ventilator, what was left to hope for?

On Jack’s 5th birthday, I penned out my “new” hopes for Jack in the first of what has since become an annual birthday letter:

“I hope that every morning when he wakes up and every night before he closes his eyes, he feels safe and knows that he is loved. I hope that his days on this earth are lived without pain. I hope he achieves a way to communicate his feelings and desires to others. I hope he stays healthy. I hope he accomplishes all that he is capable of.”

Despite my apparent acceptance of Jack’s limitations and my new hopes for Jack, they were short lived. I wanted more. When Jack started school, I had every hope that he would thrive and be able to show everyone how smart he was.  I hoped that his teachers and therapists would find a way for him to express what was going on in his head.  Jack got a power wheelchair and I hoped that he would be able to maneuver it on his own and have some control over his life.  Jack was beginning to make progress with his schooling, his communication and his wheelchair until one fateful day in 2004 when he disconnected himself from his ventilator and suffered an anoxic event – an event that stole so much from him. It was devastating and I was, once again, forced to temper my hopes for Jack. 

My hopes were renewed when Jack got his state of the art eye gaze computer system. I hoped with everything I had (almost as much as I had hoped he would ditch the vent) that he would finally be able to communicate with us. I imagined him using his eyes to write us a letter, sharing all the thoughts that had been held captive in his head all these years.  I really, really hoped we’d found the key to “unlocking” Jack. Despite all my hopes, Jack is unable to effectively communicate using his eye gaze system. 

I have since learned through my involvement with Cure CMD that Jack’s subtype of muscular dystrophy can cause cognitive impairment that affects the ability to communicate.  The reality is, Jack will never be able to communicate in the way I had hoped because of his disease.  Jack will never talk, walk, eat or breathe on his own.  Not one single hope that I had in the beginning of this journey will ever come to be. 

Imagine what it’s like when your child is living the worse case scenario for someone with his disease.  Much of Cure CMD’s mission is to find ways to slow down the progression of the disease. The hope is to help individuals NOT end up like Jack.  How’s that for a hope buster?

It’s difficult to know what to hope for anymore. I certainly no longer hope that what I want can be had.  Some might tell me to go back to the hopes that I had on Jack’s 5^th birthday – that those hopes are good enough. Some days, those hopes are good enough.  Other days, it feels like giving up.

I continue to allow teachers and therapists to come into my home. I continue to sit Jack in front of his eye gaze system.  Because, the fact is, hope is a funny thing. Hope is what allows you to take a chance on the future.  Hope is what gives you the strength to get up each day and “keep on keeping on”. 

For those reasons, I continue to Hope.