Sep 10, 2011

It's Saturday so I must be in the Hospital

Uneventful night (well, as uneventful as a hospital visit can be).  And the best news of all is that there was NO retching.  NO heart issues.  NO breathing issues.  Apparently, this was all GI related. 

We don't know if his tube was out of place or what but ... this round is over so we're good.  Now we just wait until Monday when they can replace the tube. 

In the meantime, hydration and calories are the biggest concern.  He can get plenty of fluids to keep him hydrated via the IV line.  But it's not enough calories or nutrition.  So he'll end up getting very weak by Monday.  Dr. Cartaya came in today and said that was his concern too ... so he's ordering some TPN.  Now normally, that goes in a central line (he doesn't have a central line).  They don't want to do a central line (involves surgery) just to give him nutrition.  So Cartaya is going to do some "Mickey Mouse TPN" as he called it, meaning TRYING to get him at least SOMETHING with some calories and SOME nutrition. 

GI hasn't been by today.  I think they're going to only want to deal with the acute issue, the dislodged Jtube and not address the chronic nature of why he was retching and why this keeps happening.  BUT I'd like to at least discuss it and get it on their radar. I have friends with tube fed kids and they're all offering ideas for us such as switching formulas, switching to a separate j and g tube, etc.  Cartaya suggested his nissen funoplication might be loosening. 

1pm ... his foley just Popped out of his body again even though it was taped.  I called the nurse for another foley and began to take off the gauze and tape so it would be ready for the new one. 

Guess what?  Horrible tape allergy again.  Even to the ICU tape that is supposed to be the lowest allergy around.  Well, it's clearly obvious when the red parts are the EXACT size of the tape and there is a normal skin part where the gauze was.  The picture doesn't do it justice.  The rash is spreading to his whole tummy.

So they put on a new type of tape but VERY little of it. 

2:00, GI comes in and sees his foley.  She immediately took off the tape and gauze to see the site and noticed the foley was way too far in.  She taped it where she wanted it to be. 

But wouldn't you know?  The tape that had only been there for an hour had already caused a rash ... and it peeled a bit of skin off.  And this is the same tape the GI just used on him. 

We discussed what could be going on and I described what is happening.  She said he might need a nissen revision because clearly it's not completely effective. 

So the GI leaves and the nurse and I work on getting the tape off but keeping the foley where she wanted it.  This time we're trying tegaderm.  We'll see. 

7:30 and the old tape redness is still there.  As are the patches where the skin rubbed off.  But the tegaderm might just be the winner!  (Good to know).  And it's holding the foley in place. 

They wanted a stool culture ... but of course, he hasn't gone all day.  Then again, they didn't order the CPT vest (the shakey machine which actually helps him do this too).  And he hasn't been eating, only IV fluids so I doubt he has a lot to poop anyway. 

I've noticed as the day has gone on, he's definitely getting weaker.  He's not able to hold his head up right now, much less trunk support.  It's all gone.  He isn't super grumpy yet, but in the past I know he usually gets that way eventually. 

As of a few minutes ago, the day nurse just left and said they have still been unsuccessful in ordering the kit that he will need that has his new tube in it.  What a crazy system!?!  If they can't order it first thing tomorrow, there's no way to get it here by Monday.  Seriously?  So they're ordering us two.  I know we're not allowed to have one of these kits because it is surgical (guess they don't want people trying to put them in themselves!) but they might be able to get around it by say giving it to our CMS nurse or something similar.  Where it is "his" but not in our possession.  (Works for me.)  Then we won't have this trouble again.  Then the only issue could be ... who can put it in soonest. 

We got this switched to a j tube February 16.  We had a new one put in End of February (the thing migrated).  A third one placed May 25 due to blockage.  And now this one in September.  So 4 in 7 months.  I think it a GREAT idea to have one on hand considering this is averaging one in less than 2 months. 

All in all, a fairly uneventful day.  (Besides the foley coming out and the multiple tape allergies.)  And once again, I say ... can't imagine what could/would have happened if we had not been here with him.  (shudder). 

So I leave you with this one last view.  He was sitting in my lap and this is the view *I* see when I look down at him.  Pretty precious, huh? 


  1. Beth,

    I have an adhesive allergy and tegaderm is the only thing that I can tolerate for IV's and the like. Have they tried a "skin prep" solution before using adhering the tape? Keith used this when he had his colostomy and it helped keep the skin from being irritated by the adhesive.


  2. Oh,Beth, he is so precious..... as is your faith and trust in the Lord in the face of these unrelenting challenges and Manny's persistent suffering. Grace and peace and comfort to you. My heart and prayers are with you, for you.... <3

  3. Beautiful Boy!--Beth, I was just thinking of something, so I thought I'd share. What if you (or the nurses) could make a gauze or cotton "belt" or "band" that could go around Manny's tummy so that the tube could be taped to the band, instead of his skin? Maybe you could even make it adjustable with velcro or something to secure it. No idea if it will work or not, but it came to me so I wanted to pass it on. Give Manny a kiss for me and remind him of the "horsie" ride--maybe it will bring a smile to his sweet face--I hope so. Love you guys so much!