Sunday, September 02, 2012

Another Day in Paradise

I'm starting this post at 3 o'clock in the afternoon, that way I'm assured of finishing it the same day I start it.

The issues when Jack was admitted one week ago were three-fold: (1) kidney stone; (2) UTI; and (3) impaction/slow gut.  In a week's time, they have resolved the UTI, determined that Jack has no significant GI issues and adjusted his feeds to account for the slow gut.  We knew Jack had the kidney stone coming in, but didn't believe it to be the most pressing issue because we've (knowingly) been dealing with kidney stones since February and haven't seen Jack decompensate due to pain like he has this past week.  I really thought we were on our way out of here by tomorrow at the latest, but Jack had another episode of decompensation this morning and the intensivist says that it has to be due to the kidney stone  at this point.  So, where do we go from here?

We could go home, try to manage Jack's pain with round-the-clock pain meds and, if necessary, continue to bag Jack through periods of distress until he can get on the surgical schedule for removal of the stone.  I think the docs here would rather not send us home knowing that Jack would likely continue to decompensate when his pain level is high.

The other option is to try and get Jack on the schedule now to have the stone removed.  I know our urologist will do everything he can to get Jack on his surgery schedule as soon as possible. The hold up is interventional radiology.  The first step in having the stone removed is to have a nephrostomy tube placed and that is done in IR and getting on IR's schedule is the challenge.  The reason it is so difficult to get on IR's schedule is because they only work 8-5, M-F.  It's beyond my comprehension why this is.  But, I'll refrain from a commentary on all the things that bother me about PCH.

Jack's urologist has been called and I was told he'll be in to see Jack either today or tomorrow.  It's really going to be his call whether we have the surgery done sooner than later.  I think he'll do everything he can to open up his schedule.  But, he's also going to have to be the one to push IR to fit Jack in their schedule.

What we are running up against is our trip to St. Louis. The further we push this out, the closer we are to the first week in October the less time Jack would have to recover from surgery to make the trip. The original plan was to have the surgery to remove the stone when we got back from St. Louis, but there is no way that Jack can wait that long.  If it looks like Jack will have the surgery too close the the St. Louis trip, I'll be on the phone trying to rearrange our St. Louis appointments.  All of Jack's St. Louis doctors know we travel far to see them and I'm fairly certain that if I am unable to get everything rescheduled in the same week by going through their schedulers, I can go directly to the doctors and they will get it done for us.

Could I just skip the trip to St. Louis?  My answer would be no, for several reasons.  During this hospital admission, we've noticed that one of Jack's eyes has a cloudy half-moon area just below the pupil.  Looks like a new cataract has formed on the eye he had surgery on last year.  While not an urgent issue, he needs to be seen by his ophthalmologist and when it comes to Jack's eyes (which are  very complicated -- surprising, I know), I'm sticking with the guy who has been operating on them since Jack was one year old.  The other issue I really feel needs to get checked out this year is Jack's heart.  He's been through a lot this year and I want to make sure his heart hasn't taken a hit as a result, or if it has, I guess I want to know that too.  The Heart Center at SLCH is one stop shopping, so to speak and, it's where I'm most comfortable with Jack's heart care.  Seeing the neurologist, ENT and ortho doc are not necessary, but if we are out there, we might as well see them.

That's what I know as of now.  Jack's days are good as long as his pain is under control. As of today, they are giving him a scheduled dose of a non-narcotic pain med with orders for ativan/morphine for breakthrough pain.  So far, he's not needed anything but the scheduled pain med.

I realize that these updates are ridiculously detailed. But, hey, I'm a detail kind of person, so it's what you are going to get from me!


UPDATE: As I was typing this entry, the urologist called me on my cell phone and said that he will contact IR on Tuesday and try and get something set up. He also said that he has to get the equipment lined up that he has to use for the surgery and he has to clear his schedule.  He is hoping to get Jack on IR's schedule this coming week and have the surgery the end of the week or next Monday at the latest.  Looks like we are here for at least 2 more weeks.  Serenity now.


Just have to share that while I'm hanging out in hotel PCH, my sister Joan and her family are enjoying parents' weekend at the United States Air Force Academy in Colorado Springs where my nephew is a first year cadet (or whatever they are called):

and my sister, Maureen is spending the weekend in California where she and her daughters ran the Disney half and then are spending a few days enjoying the park:

(My nieces, Bridget and Kelsey before the race)

Yea, I know ... life isn't fair.  *Sigh*

Thanks for loving my Jack, y'all!


Anonymous said...

Happy for the update, and glad that you have a plan. I like a plan:) I hope Jack's pain is well controlled for the duration of your hospital stay.

bettyd said...

glad to see there is a plan. I was concerned for Jack that he had a bone break from all the in-and-out of the hospital and being moved by those who don't know him. I am glad that was not the issue, although I am sorry that this may be a week to wait plus time to recover before you. I guess bagging on the long trip to St. L. would not work to see someone there, so I hope you can gain confidence in this plan :)

Vicki Johnson said...

Your posts never have too much detail. Hoping scheduling goes quickly.

Sarah said...

Hoping and praying Jack's urologist will be able to push this along sooner rather than later. I know you're exhausted and frustrated to put it mildly and another surgery is not what either of you need. Hoping it will at least temporarily fix Jack's pain issues and you will hopefully be able to figure out why his body is causing the stones in the first plays. Love, hugs, and prayers sweet friend!!

Susan said...

Life aint fair that's for sure. I'm sorry that it's looking like Jack will have to remain in the hospital that long but it's a huge relief to think they know what's going on and how to treat it. I just hope he can get onto the schedule quickly and then things will fall into place with the St. Louis trip. Hugs my friend.