Almost 7 years to the date....

Peter had his CAIR (Center for Advanced Intestinal Rehabilitation) check-up on Thursday, a month post surgery, as planned.  We went with the expectation that the team would reduce his TPN from 4 nights/week to 3 nights/week and then we'd continue working on reducing that further over the next month or two, eventually getting down to none within two months or so.  To our complete, wonderful surprise, the team said they'd like to see Peter stop TPN completely now! His TPN calories are few enough that he should be able to compensate for them by diet.  He already receives his multivitamin by mouth, so TPN is not necessary for delivery of vitamins.  His volume of stool is low enough that he does not need the fluid in TPN for fluid replacement.  In fact, Peter needs less fluid since he is so prone to ascites.  So, we have all agreed to stop Peter's TPN and see how he does over the next month.  He will go back for another check-up then, to see what his labs are like and whether he has been able to maintain his weight.

Back in January 2012, Peter went off TPN, but within a month, he had lost significant weight.  His face had so little fat on it that his forehead would wrinkle like an old man's and his bottom was starting to look wasted.  He no longer has the ostomy though, so as long as his intestine is able to handle and absorb the increasing amounts of food he will need to eat, he stands a much better chance at succeeding in staying off TPN this time.

Peter's good news occurs almost seven years to the date when we found out that he was sick and needed hospitalization.  Lent 2006 began with Peter and I going to the hospital for a week to find out why he was so anemic.  Now, near the end of Lent 2013, we feel an extra reason for gratitude this Easter.  While Peter will always have some health issues of real concern, it is important to rejoice in the small and big blessings that we receive along the way. 

Another surgical success

Look who's missing an ostomy bag!

Our little warrior's battle-scarred belly

Fishing in the tub

Look who's wearing real pants!

Feeling good

I am hoping these photos illustrate what has been new with Peter lately.  He has has last stoma taken down in early February.  That was his ileostomy, which we had unsuccessfully attempted to close last Fall.  It is now closed, and you can see the scar in the top photo, on his left lower abdomen.  The darker circular area of skin around the suture line shows is where he has worn an ostomy bag for the last 6 3/4 years.  I think that coloration will eventually go away, and the suture line will lighten in color over time.  The white dressing that is in the photos is just gauze and tape to secure his MICkey G-tube button, not anything related to the surgery. 

Peter has had to wear overalls or one-piece outfits up until this time to keep his ostomy bag from getting tugged on by the waist of pants and from getting snagged on something and popped if we kept in on the outside of a pair of pants.  (Remember, he is a little boy, and rolling on top of toys on the floor is part of his nature.)  The problem with overalls has been that he cannot get the straps over his shoulders and fastened by himself.  As of two days ago, he has discovered that pants are now the way to go (elastic waist for now, snap and zipper later on). 

We also convinced him to try the tub with a little bribery of computer time.  He has had sponge baths for almost 7 years, ever since he had his first PICC line back in April of 2006.  We have tried tub baths about three other times, but a wet ostomy bag was very upsetting to him.  Today there was no bag to get wet, so he felt more comfortable trying again.  The big smile was there a good bit, so I think he actually liked the bath too.  Though he has a PICC line protector on, it isn't a great fit on him, so we just kept his arm out of the water when it was on.  If he really begins to enjoy tub baths, maybe we'll get a better PICC protector, or if things go according to plan (that is always a big IF), then maybe he will get off TPN in the next several months and not even need one.

Back to the surgery....Peter spent 11 days in the hospital post-op, which was 3 days less than we anticipated.  There were a few shaky days, where we were waiting to see if Peter was going to need a stent put into his liver before we went home to help with bile flow due to dilated bile ducts (an unexpected issue uncovered with his MRI), and watching to see if the closed ostomy surgical site would open back up and the surgery fail like last time, especially as people voiced concerns that the fascia underneath is just "paper-thin."  The liver stent may or may not ever be needed, but at this juncture it was determined we can just watch and see.  In the end, this surgery gave us just a little difficulty with the surgical healing afterwards, but that was nothing compared to the infection and poor healing of the prior two surgeries, or the ineffectiveness of the first fistula surgery prior to that. 

We have had difficulty embracing this new reality of care for Peter as we should.  It is an easier amount of care not having an ostomy, and no longer having that underlying nagging worry about the ostomy bag popping, leaking, or needing to be emptied.   So often there have been health issues that crop up, and Peter's prior three surgeries were been laden with problems, so we've been tenuous in our enthusiasm and in posting about this surgery, almost waiting for an issue to occur yet again.  I don't know if we are being wisely cautious or just foolishly pessimistic.  I don't want to keep waiting for something to go wrong though, so today I am posting the very good news about Peter's progress.  We are grateful for the success of his surgery, for the freedoms we are finding with no ostomy, and for the satisfaction he has found in his new independence.  We have so much to be thankful for!


(This 3/3 entry updated 3/4, with a few details I'd left out.  Hopefully it all makes sense!)