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!