Where Are We?

I've started the first sentence of this post about ten times already and can't seem to go anywhere.  I'm so tired I can't think, but I want to give you all an update.  As I sit here trying to compose something, three feet away the nurse practitioner is poking all over Jack with a needle trying to get a line in him for the third time today.  He lost two lines today.  They've exhausted the feet and hands, they are now going for the chest.  The day Jack was admitted, the IV team suggested that they order a PICC line. Apparently, no one listened and Jack is suffering the consequences.  He's now on IR's schedule tomorrow for a PICC line.

Anyway, here's where we are.  Yesterday evening they decided to start Jack back on his regular feeds, with the hopes of discharge today.  We usually just pour the entire can of Pediasure in his feeding tube, so they did the same.  Mark was here for the evening feeding and he said that Jack seemed uncomfortable when they fed him, but he was tolerating it okay. After I got back to the hospital later that night, the nurse gave him another can.  Within minutes of giving him the can, he started showing signs of being in distress again.  He was crying (Jack almost never cries), grimacing, turning red, heart rate going up and sats going down. As I've described it before, it looks like the pain comes in waves and it is relentless. I asked the nurse if she could pull the food back out of his stomach to see if it would give him some relief.  While she was doing that, Jack's heart rate shot up to over 200.  The highest I saw was 220.  I haven't seen numbers that high since Jack was a baby.  The nurse was really studying the monitor while this was going on (I now know she was paying attention to the heart wave).  His heart rate then dropped down to 100 pretty quickly and then went back up.  At this point, she listened to him with her stethoscope and called the resident. I'm looking at Jack and he is still crying and he's clamping down and not breathing well and the monitor is alarming for all kinds of reasons. The room filled with people and a bunch of tests were ordered "stat". From what I could decipher, Jack was in ventricular tachycardia.  They gave him several meds, including ativan and he eventually settled down and his heart rhythm returned to normal. Also, earlier in the day they had switched him over to his home vent as another step towards discharge. During the event with his heart, they put him back on the hospital vent.  I asked the resident this evening exactly what happened to cause the v-tach and he said that Jack was hypo-ventilating (due to the pain) and he became acidotic and that's what caused the heart arrhythmia. 

Needless to say, I couldn't sleep after watching all that transpired. Thankfully, Jack feel asleep with the ativan on board. Too bad it wasn't a buy one, get one free deal, because I could have used some ativan myself. 

This morning during rounds the plan was to start Jack on his feeds more slowly using the feeding pump.  I can tell you, I knew it wasn't going to make any difference slowing the feeds down, he wasn't going to tolerate them. But, it's not as if they were going to take my word for it.  They started his feeds with the intent of giving him one can over two hours.  I think he got about a twenty minutes into the feeding and it started up again - the pain and everything that goes with it.  I asked Jack's nurse to get the resident and Intensivist in the room so they could observe what was happening.  They stopped the feedings and ordered a KUB.  The Intensivist called me over to look at the x-ray and it showed that Jack was still impacted in the middle part of his colon. (Yet, he'd just had a KUB in the ER two days earlier and nothing was noticed and, he was supposedly all clear at the end of his last admission less than 10 days ago.)  The plan - do another clean-out.  Been there, done that and it hasn't resolved the problem yet.  I'm becoming very irritated with this plan and I'm sure Jack is pretty darn sick of it too.  Regardless, I don't get to write the orders.  So, we are doing clean-out number three.  After they think Jack is cleaned out they will get (yet another) KUB to make sure.  Then what?  I'm going to make sure that he stays in this place for at least 24 hours, maybe more, to make absolutely sure that Jack tolerates his feedings once they are resumed.  Every other time we've gone home after a clean-out, Jack is good for about a day or two and then the pain rears its ugly head little by little until it reaches the point of no return - which is the point where Jack's breathing is affected and we are back to bagging him again.  Do I think the third time will be the charm? No. My gut tells me there is more going on, we just haven't figured it out yet.  

Another thing that I observed, as has the Intensivist, is why can Jack tolerate the GoLytely (the clean out solution), but not his food?  If it is a matter of his intestines being inflamed and irritated because of the UTI and/or impaction, he should be just as uncomfortable with the GoLytely as he is with his food.  Is it possible that Jack has developed a sudden intolerance to his formula?  I think we need to get GI involved and I think they will if, after this clean out, Jack continues to decompensate when he is fed. I really have no idea where we are going with this. But, if it is as simple as a clean out, then, in my opinion, it would have worked before.  I get that we were dealing with an undiagnosed UTI with the prior admissions. However, the Intensivist also wonders why, with the UTI resolved, is Jack still having all the GI problems.  

Jack is just complicated because his body is a complicated mess due to the progression of his disease. I always request copies of the written reports from all of Jack's tests that he has done here at PCH.  I received the reports from his last stay in the mail yesterday.  Reading through the various reports and the description of Jack's body from a clinical perspective, it really hit me that we will never get Jack back to 100%.  At this point, it's more a matter of keeping Jack pain-free and comfortable - basically, palliative care.  It puts making the trips to St. Louis in a new light - not that I'm going to stop taking Jack to his St. Louis doctors anytime in the near future, but it's food for thought.  In any event, right now we have our work cut out for us with the kidney stone, UTI and GI issues and I just hope and pray that we can get these resolved here and now with this admission because Jack is tired ... and so am I.

It's 1:30am again as I finish this post and I wonder why I'm so tired I can't keep my eyes open during the day?

Thanks for all the love you share with your comments here and on Facebook, and for your texts, emails and phone calls.  It's the most awesome feeling to know that my Jack is loved by so many.  I'll close with part of an email I received from a friend of mine who also takes care of Jack as his nurse on a PRN basis:

"I love that kid and it breaks my heart that he's going through this.  There is something so deep about Jack that I love and he is so much fun to hang out with."

There truly is something very "deep" about Jack that is hard to explain, but you can't help but feel it when you take the time to be present in his presence.

Love ya'-