Sunday, April 08, 2012

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!


Susan said...

I'm so glad that Jack is feeling better. Whichever place you decide to have the surgery done I hope it puts an end to Jack's pain. I understand what you are saying. I have had many experiences of leaving messages and getting no call back. Then I call Cincinnati (or other clinics) and actual calls back and much faster than locally. You have to wonder at how it can be SO different.

Jenn said...
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Jenn said...

Thanks for posting Ann! I was worried about Jack's kidney and kept coming back to look. You and I never met, although I know how much Karen enjoyed working with Jack, I have followed your blog because it is really helps a great many people understand what having a child with these rare medical needs is like. I have shared your stories and helped a lot of people over the years. I know Jack will do just fine and keep inspiring so many more people! Plus Eric cracks me up! I have fingers crossed for a sx date soon