Monday, July 09, 2012

Admission and Home

So last week went something like this ....

Monday:  Call from urologist regarding results of CT.  Urologist said he'd call my pediatrician regarding impaction issue to see if he could help speed up getting in to see GI doc.

Tuesday:  Go into the office for a few hours; on drive home, pediatrician calls and says that Jack needs to be admitted to have this dealt with.  I tell pediatrician that I'm on my way home to get Jack and take him to appointment to see oral surgeon.  Pediatrician says he'll call GI group.  Within minutes of getting home, receive call from GI's office telling me Jack has an appointment on Thursday morning at 9am.  Load Jack up for the trip to Mayo Clinic to see oral surgeon.  Driving down the road, realize air conditioning is not working (it's 109 freaking degrees outside).  Roll down windows and keep driving.  Arrive at Mayo Clinic, greeted by unfriendly, annoyingly slow registration person.  Meet with oral surgeon -- love him!  (he has gorgeous blue eyes, which didn't hurt either ;-)  Oral surgeon says no need to schedule surgery specifically for impacted tooth - let him know when urologist is going to put him under to deal with kidney stone and he'll pop in and get the tooth out.  I was astounded that a doctor in this City actually suggested coordinating procedures with another doctor and I told him so.  (Incidentally, I'm not going to coordinate it with anything the urologist might do in the future, but I will coordinate it with the dentist when he puts Jack under to clean his teeth.)  Drive home at 4pm in rush hour traffic and no air conditioning in the car.

Wednesday (July 4th): Worked most of the day because I missed half a day on Tuesday and was going to miss half a day on Thursday.  Did end the day on a good note -- Diamondback's baseball game with my sisters, a couple of my kids and a great fireworks show!

(my sister got great tickets from a friend - right behind home plate.  The kids were in the cheap seats in another part of the stadium.  Is that wrong?)

Thursday: Appointment with GI doc.  Saw the CT scan and a section of Jack's bowel was very large and distended.  Discussed option of doing the "clean-out" at home. Would require me to give him Miralax (or something similar) every half hour around the clock until he was cleaned out, with no way to keep him hydrated because his g-tube is his only source of hydration and we would be using it as a route to give him the clean-out medicine.  When exactly was I going to sleep?  Decided to admit him so he could get "Go-Lightly" continuously via a pump and fluids via an IV.  Choices included waiting for a pre-auth or going through the ER.  I told him I had better things to do with my time than sit in the ER.  Dropped Jack and his nurse off at home and went into work for a few hours.  Didn't hear anything by 1pm whether they got the pre-authorization from insurance. Called the GI's office and got the scheduling nurse's voicemail.  Waited an hour, no phone call yet. Called my insurance company and asked if anyone had even called yet to get a pre-auth.  Told that there was nothing in the system that showed a pre-auth was requested. Called GI's office again and left a very terse message that I needed a status update asap.  Received a phone call back from a very helpful nurse who said she'd find out what was going on.  Finally received a call from the hospital that a bed was ready.  Left the office, got down to Phoenix Children's at 5pm to start the "process".  Slept at the hospital with Jack in one of those chairs that they call a "bed".  This is Jack's third admission and I've yet to get a room with a bench/bed.  Phoenix Children's has a brand new building with state of art everything but they didn't put beds in every room, only every other room.  Makes no sense!

Insert here: I was very happy with the speed at which Jack was admitted, IV started and Go-lightly administered. The house staff were all terrific.  A much better experience than our experience on the floor back in March (prior to his surgery).

Friday: Jack is starting to make progress. :-)  I have to go to the office because I have an appointment that I can't miss.  Kristi comes by the hospital to watch Jack for a few hours while I go to the office.  Get the call around 4pm that Jack is all cleaned out and they are going to discharge him.  Drive the hour from work to the hospital, load Jack up and head home.  Side note: Van had been dropped off at mechanics to have air conditioning repaired.  Mark had to rush out of the hospital at 4:30pm (as I'm on my way back to the hospital) to go pick up the van before the repair shop closed.  Thousand plus dollars later and the van now has working air conditioning. Yay!

Friday evening: HOME.


Now, maybe the above doesn't sound like much and it's nothing compared to what my friend Christy does on a daily basis, but trying to meet my responsibilities at work while meeting Jack's needs this last week (and the last few months for that matter) is KILLING me.  I'm the first to admit, I cannot do it all.  I am flat out exhausted.

How is Jack?

He's much more comfortable. But, I'm still worried about him, for a couple of reasons.

1.  His heart rate all weekend was very low for him - in the 50s and 60s most the weekend and he seemed really tired.  Jack's baseline when he is awake is generally in the 80s and 90s.  Today, his heart rate bumped up a little into the 70s and 80s, but tonight, it's down to 50s-60s again.  Not sure what the unusually low heart rate means, if anything.  His body is less stressed now, which would account for some of the drop in his heart rate, but under any circumstance, 60 is low for an awake heart rate for Jack.

2.  He still has stones that have to be dealt with.  I got a copy of the report from the last CT scan and it indicated that there is a "conglomeration of stones in the ureter".  I asked the urologist about this and he said that he reviewed the CT with the radiologist and they both agree that what they are seeing are stones that would be in the ureter based on their position, but, in actuality, they are the stones that leaked out through the hole that was created in the renal pelvis (not according to plan) and they are really located in the peritoneal cavity, not the ureter.  These stones are different from the 1-2cm stone that is forming in the kidney.  You know what really stinks is that Jack's CT scan will always be deceiving because unless the person reading it knows the history, they will read it as stones in the ureter when they are actually in the peritoneal cavity - or are they? How do they really know?  Pisses me off that this is even an issue.


The plan this week is to not have one single doctors appointment so that I can actually get in an entire week at the office. Is that too much to ask?  Jack had an appointment scheduled with his pulmonologist this week, but I cancelled.  I need a week off.

We are to get a 24 hour urine in 7 days.  Since he was off his formula during the clean-out, they want him on the Pediasure for 7 days before we collect the urine.  After that, we will see the nephrologist and see what we can do to stop the stones from coming back. And, then ... we'll discuss how to get rid of the stone that has regenerated.  No doubt, another KUB or CT scan is in the future and yet another trip down to PCH and yet another half day or two or three missed of work.

Did I mention that I can't do it all?


Christina said...

oh Ann:( how exhausting. i hope this week is quiet for you and that Jack continues to feel better. xoxo

Sarah said...

But you are doing it my strong wonderful friend! You are the master coordinator of all that is Jack and your family and you are making it work. I know you are exhausted and frustrated and drained beyond other people's comprehension. If I could be there to ease your load I absolutely would. All I can do is continue to pray for your strength and sanity and for Jack to soon be well. Know that I love and admire you so much!

Christy said...

Haha! You are funny. I will agree that this year for you and Jack is all too familiar for me. And I so wish that wasn't the case. For either of us!

I can't believe the whole situation with those #$@#*^@ stones! Not one thing about them has been simple.

I know the admissions are a pain - however, I think that was a good call so you didn't have to be the one to help with Jack's clean out. I am so glad that's taken care of. I hope he is happier now.

I also hope that your plan of having no appointments this week worked out.

Hang in there, my Friend. I know you are exhausted - both physically and mentally. I hope you can get some relief soon. And Jack, too.

Much love! xo

Susan said...

None of us can do it all, but you are doing your best and doing a darn good job! I hope you can catch a break and recharge. It's been one thing after another. Remember how not that long ago you kept saying there was nothing to report, just same old same old? Life is cyclical. It will calm down again. I wish we lived close enough to get together for drinks and a sympathetic ear. XOXO.