Saturday, September 01, 2012


I'm going to try and make this a short report because, big surprise .... I'm tired.

I believe I left off at the decision to commence clean-out number 3 and the PICC line.

Yesterday afternoon when I came back up to Jack's room after he had the PICC line put in, I was stopped by the GI nurse practitioner.  The PICU team had requested a GI consult and apparently, the GI docs are too important to conduct the initial consultation, they only talk to you after their NP has.

The NP made a comment about us being from St. Louis, telling me that she was from St. Louis too and had worked at Barnes (the adult hospital next to SLCH) for years.  The St. Louis connection gave me a comfort level with her she probably wish I didn't have.  I pretty much unleashed all my frustration on her and told her that I thought Jack needed a scope, that I was tired of all the admissions and getting no resolution to Jack's pain and if something wasn't done soon to help Jack, I was putting him in the car and driving  to St. Louis (as if that was even a possibility or that she cared?!)  She asked a few questions, but mostly just listened.

A couple of hours later, Jack's nurse came in and turned off the GoLYTELY. When I asked her why, she said because GI said the KUB did NOT show stool in the bowel.  I was a little annoyed that GI was all the sudden calling the shots when I hadn't even been graced by a physician's presence yet.  I asked Jack's nurse to let the resident know that I wanted to talk with her.  A few minutes later, both the resident and the Intensivist showed up.  I asked why the change in plans and why GI was now calling the shots.  (I'm not even sure why I was upset that GI was calling the shots, I wanted them involved, didn't I? I think it was their approach.  I prefer the team approach, not being told what we are going to do).  In any event, the Intensivist said that he asked GI to consult and that we just need to remember that whatever GI comes up with, it's only their opinion.  He said we were free to accept or reject their opinion, but that we at least needed to hear it.

I have to digress here and say that all the planets and stars must have been aligned just right (and by the grace of God), the Intensivist covering the PICU this week couldn't have been a better fit with my personality.  He's a high energy guy and he handles my high maintenance energy personality very well. He "gets" me and he and I think alike.  I also get the sense that he is very protective of his patients, he likes to provide all the care as much as possible and he doesn't like specialists coming in and tromping on his territory.  

Anyway, later that afternoon, the GI doc came by Jack's room to talk with me.  He, obviously, had been prepped by the NP because he didn't really have much to say, but suggested that maybe we should scope Jack's stomach.  I added that I thought it would be a good idea to get a colonoscopy too.  He was okay with that, but told me that he wasn't covering the hospital on Friday and that it would be another GI doc performing the scopes.  Shortly after the GI doc left, the Intensivist stopped by and asked if I was okay with the plan, which I totally was.  He also told me that the GI doc who would be performing the scopes was very good - that she was a "thinker" and a good person to have trying to figure out Jack.

The scopes were done this afternoon and I was so hopeful that they would give us the information we needed to pinpoint the source of Jack's pain. After the scopes were finished, the GI doc went over the procedure and provided me with copies of her reports.  To give you an idea of how things went, the Endoscopy Report provides "the procedure was incomplete".  The reason it was incomplete was because she was unable to get the scope down Jack's throat due to his enlarged tongue and his jaw contractures, which made it impossible for her to manipulate his jaw and neck to get the scope in.  Rather ingeniously, however, she scoped his stomach through his g-tube site.  She didn't find any ulcers or anything obvious in the stomach that would be causing him pain. She did take biopsies.

The next report was the Colonoscopy Report, which likewise provides "the procedure was incomplete".  In this case, she could only go so far with the scope because it would have required manipulation of Jack's body that she was not comfortable with given his fragile bones. She didn't feel it was necessary to see further into the colon because there wasn't a concern that Jack had a bowel disease that would require looking further up (such as Crohn's).

The doctor felt like she saw enough of what she needed to see to come to the conclusion that Jack doesn't have an ulcer, impacted stool or anything obvious that would explain his pain. She thinks it's a motility issue.  The recommendation is to change his formula to a pre-digested formula and give it to him over time instead of giving bolus feeding.  I asked her how someone like Jack - who has had severe muscle weakness all his life, can all the sudden have motility issues. She mentioned something about maybe having a virus or some infection that triggered it.  Doesn't make sense to me.  (According to my friend who is a doctor "motility is what they end up with when they don't know what else to call it").

The Intensivist and I are both a bit skeptical because Jack had another pain episode this morning and he hadn't had any food in his stomach for several days (only the clean-out).  However, we have nothing else to go on right now.  They started Jack on feeds tonight at a very slow drip (starting at 5cc/hour) and we'll see how it goes until, as the Intensivist said - "he throws us another curve ball".

The one thing they have not checked is Jack's gall bladder.  I mentioned it to the resident this evening and she seemed to be on board with ordering an ultrasound of the gall bladder.  If they don't bring it up in rounds tomorrow morning, I will. The GI's biopsy results won't be back until Tuesday.  At this point, I don't have any idea how long we will be here. I just know that I'm not leaving until I'm comfortable that I won't be back within the week.

Obviously, we won't be going to California and I won't be participating in the Disney Half Marathon with Team Cure CMD.  I'm sad and I'm mad.  Yea, I know .... life isn't fair. The only thing worse than spending the weekend in the hospital is spending a three-day weekend in the hospital.  But, here we are and all we can do is try and make the best of it!

So much for a short report.  For the third time, I've started a post on one day and finished it the next!  Have a great weekend friends.


Anonymous said...

We will keep praying and hoping they figure something out. In the meantime, I also hope you can get some rest. Nothing worse than chronic sleep deprivation exacerbated by a long term hospitalization...

Anonymous said...

Oops. That was from me...Kristy:)

Sarah said...

Oh Ann...I wish you were here doing the half marathon for Cure MD. Long wknds in the PICU are the worst. Jack's progression of his disease and your inability to even come participate in the walk because he's in the PICU is all the more reason why people should donate to help find a cure. The whole realization of the irony of the situation has brought me to tears this morning. I just want to wrap my arms around you. Continued prayers my friend. Lots of love and hugs to you both.

Melisande said...

Love you both & hoping for a quick resolution. Hugs!!