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. 

Home!!

On Friday evening, October 7, we received the good news that Peter's wounds are healing enough to come home.  We arrived home Saturday evening. 

Peter still has a wound vac on the midline incision, but we don't expect that he'll need it more than a week or two.  The vac dressing sits on top of his belly, with a tube attached to the dressing, and then a pump attached to the tube, which all work together to provide suction to create negative pressure to promote wound healing.   I wasn't sure how we would manage having a five-year-old attached to a wound vac.  It is a three pound machine, about the size of a small lunch box, and the tubing is about five feet.  Much to my surprise, he has been remembering to take the machine with him when he wants to walk around, and gathering up the tubing so that he doesn't trip over it. 

Dare I say that life without the fistula is dramatically different already?  I am still holding my breath that some new problem does not emerge, but so far I am astonished by the difference in his care.  Once the incisions heal up, I think that difference will be even more profound.  I know it doesn't sound like much to go from emptying two ostomy bags to just emptying one, but multiply that times three or four times a day, times seven days a week and it adds up, especially to a five year old who has to stop playing when mom says it is time to get his bags emptied, 800 to 1000 ml a day from that fistula!  Then add to that the additional time difference between a ten minute ostomy bag change twice a week, versus an hour-long change for both the ileostomy and fistula which was occurring two to four times a week. 

The main reason for the surgery of course was not to simplify life, even though that has been the benefit I find most dramatic at this early stage post surgery.  The real purpose of that very big, risky surgery was to allow this child to eat and get off TPN.  The fistula has repeatedly made it impossible to get feeds high enough to get off TPN, because it would leak more fluid as the feeds increased, throwing electrolytes off and fluid status off.  The true dramatic changes from this surgery are yet to unfold as we hopefully finally get Peter off TPN over the next year or so.  Yes, he still has many risks with liver fibrosis, portal hypertension, low white count, low platelets, and enlarged coronary arteries, but I expect that some or much of this will resolve as he moves away from TPN dependency as well.  Omegaven halted the progressive liver damage so that we could get to this stage without a need for transplant, but with Peter's bilirubin having been so high for so long, the only way to heal the liver from its fibrosis is to get off TPN.  So, now we have a chance to do that!

Another bleed, but...

Today is Day 28 post surgery.  Peter has been on the regular floor since Sunday, four days after the big bleed.  Yesterday he bled again, but his timing was impeccable.  The surgery team was actually just a few doors down from his room and came in as soon as the nurses came rushing in.  Dr. Kamin followed in within five minutes, and Dr. Jennings within ten minutes or less.  And this time, we were able to see exactly where the bleeding was coming from and fix it!! 

Peter has a small "hole" on his ileostomy stoma, which I noticed on Monday.  Jen, the nurse who held pressure on the stoma with last week's bleed, noticed a clot in that same spot last Wednesday after the bleeding stopped.  Drs. Kamin and Jennings both were made aware of the "hole" and the clot, and said that if we were to see another bleed and witness the bleeding from there, then we would know that it was the source of the big bleed last week, as we have all felt a little unsettled that the esophagus was the bleeding source given there was no blood in the g-tube and the stools that followed had no trace of blood in them for days.

So, yesterday, exactly one week from the first bleed, Peter bled again, but with his timing of it, we were all able to see the exact source of the bleed, stop it early so he did not need a transfusion or to go to the ICU, and to get it sutured closed.  How perfect is that scenario?!  Truly, we are all amazed!  Chris and I continue to fully believe there is a Divine plan to all of this, which we expect we will never know, but to call the timing of this a coincidence seems way too random to both of us. 

In terms of where this leaves us for future bleeds, we will need to pay attention for bleeds like we did years ago, and hope that this too shall pass.  There is a good chance that with a little more time away from surgery and with the resuming of enteral feeds, the portal hypertension will decrease.  However, as has always been the case, there is a possibility that the portal hypertension will increase too, and if it does, then we'll begin talks as to ways to decrease it. 

The wounds are improving, but the midline vac is still on.  I can see Peter's belly button again, and despite the surgical scars on his belly, seeing that little belly button where the fistula used to be just makes me want to smile and cry both at the same time. 

Peter gets another wound vac dressing change tomorrow and Dr. Jennings will decide if Peter can go home yet.  His lateral wound is looking really good now, and hopefully will close completely in another week or so.

As an aside, Flashes of Hope was at the hospital the other day and did a free photo shoot of Peter.  Per their website, http://www.flashesofhope.org/about/mission, "Flashes of Hope is a nonprofit organization that changes the way children with cancer and other life threatening illnesses see themselves through the gift of photography and raises money for pediatric cancer research."  I am really looking forward to seeing the photos when they arrive in a few weeks!

Day 23

Peter had his scope yesterday afternoon and extubated well.  Dr. Kamin is still not entirely sure what caused the bleed, but banded some newly-enlarged varicose veins in Peter's esophagus in case they were the cause.   He scoped as far into the small bowel as he could and as far up the ileostomy as he could, and did not see any other areas likely as cause.  Peter has been on an octreotide drip and a pantoprazole drip since we came to the ICU with the bleed, and they will be weaned off shortly. 

The surgical incisions are improving slowly, and there is still one area that is being watched carefully.  We'll be here for a little while longer to keep watch with both the bleeding and the incision healing, but overall the news seems postive.  The plan is to move back to the regular floor tomorrow.  Peter is in very good spirits and increasingly playful.