Pics from the zoo and Halloween

Guess who Peter was for Halloween?  Dr. Kamin!  He was so proud to play the role of Dr. Kamin as he trick-or-treated around the neighborhood while everyone oohed and aahed at his selection of costumes, most of them knowing how playing the role of doctor has more meaning in it for Peter than it would have for most children.  The red backpack was carrying his wound vac, which he became quite adept at carrying.

Birthday, wounds, and TPN progress

Many updates on Peter since the last post.  Peter finished with the wound vac November 4.  The vac was on longer than anticipated, but did the job of closing up the wound.  Peter has some pyogenic granulomas on his wounds which are making them not fully heal, but we are hopeful that treatment with silver nitrate sticks can heal them.  Sadly, that treatment hurts as it is being applied, as it is essentially burning off the granulomas.  It does not hurt once the dressing is put on, but this poor kid has been through so much it is frustrating that this treatment hurts him.  We could give a pre-medication, but with a systemic med he then gets drowsy and dopey for a long time after the procedure.   We are looking into a topical anesthetic for the area, but unsure if it can be used on an open wound without becoming systemic inadvertantly.  We will do this procedure for a few more days, and then if this does not work, he will need surgical revision of both surgical wounds, since they are both affected. 

Overall, though, he handled that big surgery phenomenally well, much better than many expected, and we are glad that this surgery was performed.  The final report on the intestinal surgery indicates that all of the removed bowel was diseased, and if he had not had this big surgery performed, we would still be dealing with intestinal fluid losses from the fistula and still stuck on TPN seven nights a week. 

So due to the success of that surgery, we have amazing news.   Peter had his CAIR appointment this past week, and he has grown so much that he is now going to be off TPN for four nights a week!  This is the most he has been off since TPN was initiated on him in late Spring, 2006.  He is working hard on taking in as much formula as he can, and once we are off TPN, we will work on switching over to a more palatable diet.  He has gone from seven nights on TPN when we left in October, down to three nights of TPN in only a month and ten days!  The CAIR team was quite impressed with his progress!

Peter also had his sixth birthday.  We took him to the local zoo and he had a terrific time seeing many of the animals that he has seen in his books and that he has copies of in plastic.  Going to a zoo was his big request while we were inpatient in Sept through Oct, and it was such fun watching him take it all in.