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)!