Sunday, March 25, 2012

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 ....


Susan said...

Oh wow Ann! I wasn't expecting to read any of this. I'm glad Jack's okay and I'm so glad you found the problem. It does seem crazy to me that he has to wait so long for surgery but I guess that means it's not an emergency so that's good. Kind of. I hope he's feeling much better when it's all over. I love hearing about the Touchstones. It's great work you are doing! Think of all the patients this will affect in a positive way!

Anonymous said...

Hi Ann: I came across a photo of Jack wearing a CPAP device as an infant. I actually work for the company that makes that device and wanted to know if you would be interested in allowing us to use that photo. If so, I can be reached at CooperSurgical. Thanks, Pam

Ann said...

Pam, please email me at