Monday, October 29, 2012

At home again!

Though I meant to post more during Peter's stay at Children's, things got so busy there really was not time to post.  Between rectal stool, ostomy issues, seeing doctors and nurses, and being a six-year-old who wanted to be kept busy, each day was quite packed with activity. 

Peter came home this past Friday, the 26th.  He is on two IV antibiotics three times a day through Wednesday, and then is fortunately done with them.  He is currently back on TPN 7 nights a week instead of 4, but this should be temporary.  His diuretic was increased to help remove some of the fluid weight he put on at the end of our stay. 

Currently, Peter's stoma looks like it is going to be putting out much more than it initially was, and we are looking into ways to plug it up so that more stool goes downstream to the colon again.  He has demonstrated that his colon does work and ideally we'd like to get as much stool to go there as possible, so that the colon is stretched enough to tolerate all stool when the stoma gets fully closed again.  That should hopefully be in a few months. 

Unfortunately, the decrease in ostomy stool seems like it will be a challenge to his already tenuous fluid balance, something I hadn't really considered amidst the excitement of getting the colon working again, hence the need to increase his diuretic now.  We have removed all unnecessary sodium from his IV fluids, so his IV antibiotics are only mixed in water, and there is truly minimal sodium in his TPN (only 4 mEq in his 400 ml TPN bags). 

Overall, he continues to be doing well and is his usual cheerful self.  He is so excited that he is going to be home for Halloween and for his seventh birthday, which is November 1st.  Hopefully Hurricane Sandy won't squash too many of his plans!


Saturday, October 13, 2012

The new stoma

Peter ended up having surgery again yesterday.  The incision from the surgery on the 5th was infected and there was very little transit through the bowel to the colon even after a week.  Peter was having large amounts of green bile come out the G-tube even a week post-op, and had developed a low-grade fever.  

The surgery was another four hour surgery, but seems to have been successful in cleaning out the incision and in increasing the flow of gastic contents through the bowel.  The down side to the surgery, besides the setback to going home, was that Peter ended up getting part of his ostomy back.  This is supposed to be a temporary ostomy, and it is only 7mm big, so nothing, or very little, should come out of it.  The idea is that it will be a "pop-off valve" for gas and stool to pass out if Peter's bowel is having difficulty sending things all the way through and out the rectum.  This will keep the bowel from distending or having bowel contents back up into the stomach.  Peter's bowel prior to this second surgery was distended inside, and that was causing problems with things passing through.  In yesterday's surgery, Dr. Jennings additionally shaved off some of the granulation tissue from the old stoma which may have been causing some partial obstruction, but also adding the pop-off valve should hopefully allow Peter to hurry up home.  The concept seems simple enough, I just hope that it all works this way and we are not having lots out this new stoma.  It is too soon to tell how this is going to go.

Peter is on three IV antibiotics to fight the infection and they seem to be doing the trick.  Peter was up and about today, only 16 hours after surgery, and only needed one dose of Tylenol for pain the entire day.  He has a great spring to his step today, and seems to feel good, not "terrible" as he had been stating to people the last few days.  He even made several rectal stools today.  Perhaps tomorrow he can begin a "clears" diet, and we'll see how the bowel handles that.  Today he was not allowed anything by mouth, other than some meds.  More to follow as time allows.

Sunday, October 7, 2012

Bye bye ostomy!

Drum roll.... Peter's ileostomy is gone!  

Peter had surgery on Friday to resolve the issue of why no more stool  was coming out of his rectum.  After the last surgery two months ago, he had great success with stooling for about a week, and then it all just stopped.  Dr. Jennings agreed to do another surgery, but it was unclear why  the stool was not coming all the way through any more.  One of the possibilities was that the colon had  folded over again and that the fold would surgically need to be removed (big surgery), or the other issue was that the stoma itself was the issue and needed another revision (minor surgery).  

As the bowel fluoroscopy via enema was mentally horrendous for Peter when he had it done two months ago, Dr. Jennings and Dr. Kamin agreed to look at things when Peter was already asleep in surgery, and then come out and tell us which surgery Peter would need.  To our great elation, the fold was not the issue, but the stoma was, and Dr. Jennings felt that the problem with it was that it prolapses.  To resolve that, he decided to go ahead and close it off completely (a little more than minor surgery, but not the bigger one like a fold would have required).  Peter went into surgery at 8 am, the doctors came out about 9 am to discuss the surgical plan to close the ostomy completely, and he was in recovery at noon.  He went straight to the regular floor, no ICU.  Amazing!  

What a great joy to see no ostomy bag there, but a simple 2X2 gauze dressing and some tegaderm plastic covering instead!  He still has a drain in the wound, but it puts out very little.  Peter was given the OK to try clear fluids today.  Unfortunately, he ended up needing to vent his G-tube by the end of the day and there was 300+ dark green bile in his stomach.  However, his demeanor suggests that this is not a big deal, just a minor issue.  Hopefully that is so.  He is back to being off all fluids by mouth overnight, and we'll try again tomorrow.  Peter walked over a mile yesterday, and over three miles today.  The only pain med he has needed was one dose of Tylenol on Friday evening, and two doses on Saturday.  We should all feel this good after bowel surgery!  

To say we are thankful to God that Peter's bowel is in full continuity again is an understatement.  This child had three emergency surgeries in 2006 that left him with FOUR ostomies, and he now has none.  There have been thousands of prayers said for Peter over the years, and to see him with no appliances on his belly other than a tiny G-tube now is a beautiful sight, scars and all.  We continue to pray that Peter's bowel recovers well from the surgery and that he is able to finally get off and stay off TPN.  

Hopefully this computer will let me update more as he recovers.  It is an old computer and very temperamental... completely non-functional last night, but worked immediately tonight.