My Blog List

Search This Blog

Follow by Email


Wednesday, April 6, 2011

Invasion of the neon monster:(

This post was originally titled "4 weeks old"  YEA!!!  Then it was "The Mummy" and now its the neon monster as we are sad to report that Joey has pseudomonas growing on some of his wounds:(  We are starting with vinegar bath and topical antibiotics fever (yea!) and its just on his arm pits and since the vinegar bath and new bandages this morning, tonight when we changed all of his bandages those spots looked better:)  So hopefully we caught it early.  (that was one of the infections that contributed to Garrett's death).

We took him back off the oxygen just to see how he does without it and has been maintaining O2 stats around 98 while awake (and calm) and 94-93 when asleep or screaming.  So we'll see how tonight goes.

Sunday night (SUPER early Monday morning) after screaming for hours on end I was beginning to wonder if the 24cal formula he is on was the reason he screamed so much, so we went back down to regular 20cal to see if we noticed a change and Monday night went MUCH better.  Then...we got to Tuesday night and that was the worst night yet, even worse than the last night in the hospital.  He slept from 10-12 and then was up on and off every 10 minutes from midnight till 8am:(  We could not figure out what the problem was till this morning and saw the infection on his arm pits. Hopefully tonight is better.

Other areas:  

Feedings: feedings using the feeding pump seem to really bother him so we are going to do all feeds via gravity.  So far he seems to tolerate them better.   It's not as bad as it sounds as the continuous feeds overnight weren't working for him either and he'd still wake up ever 2-3 hours so now we just feed him every 2-3 hours.  We switched formulas yet again back to the really expensive (and smelly) stuff.  The doctor hopes that will help with the colic-like symptoms.  

Skin: getting worse:(  we had to wrap him from the neck for the first time in his short life (hence "the mummy" reference above.)  His back is still ok, but he has a lot of breakdown on his chest and it was getting harder to keep the pads in place and clothes wasn't working so we wrapped his whole torso tonight hoping that will help.  

Visit to the pediatrician:  that was yesterday.  He weight about 7 pounds.  It's hard to get an accurate weight w/o taking off his clothes, diaper and bandages and we aren't doing that in the doctors office so we just weight him as is.  She wasn't real happy with this weight and doesn't get that EB kids tend to gain slower then healthy kids.  She is also a little unsure about all his "issue" and it really pushing us to rely on his specialists for this care and not her....*sigh*.  I know I should find a new doctor but we JUST found her last summer after a long search for a new doctor for Sami.  I really don't want to start over again.

I think there was more I wanted to write about but i can't remember anymore so I guess that means its time for bed! 

 in my new g-tube friendly outfit:)

one of my sister's took this picture


  1. HUGS sara...... hang in there...... sending prayers and well wishes...


  2. Many prayers for your beautiful little boy that he will continue to improve.