Wednesday January 17, 2007

Sorry to our faithful readers for not blogging.

Last week on Thursday night, Roy and I made the switch. He got down here around 6:30pm and after going over all the instructions and details of what has been going on I finally hit the road around 7:30. Got home late, but gave Christina a kiss good night and got to sleep in my own bed.....Yeeha!!!

Friday morning Jack was scheduled for an Endoscopy and Colonoscopy, again. So, of course I was up early waiting for Roy's call to tell me that Jack went into the OR. I got the call and I was put at ease. There haven't been many procedures that Jack has had that I haven't been there for, so it's always difficult for me to be away. Anyway, the scope went well and we were told that we wouldn't have biopsy results until this week. Roy and Jack had a good weekend and so did Christina and I. It was so nice to be home but everything must come to an end and Christina, my mom and myself left early Sunday to make our way down to Philly.

It's amazing how a couple of days away that I could really see a difference in Jack. He's gained about 2 and half pounds and he's got those huge cheeks again, which is so nice to see.

Here we are Wednesday and so far believe it or not, we don't know anything more then when we got here. His scopes came back that his esophagus, stomach and duodnum (please forgive my spelling) showed to be better and his lower gut is still very inflammed and quite obvious of why he's still having all this watery stooling. So on to the next step......

I did neglect to mention that there was a big meeting last Tuesday with, GI, BMT, and Immunology to discuss what was going on with Jack and that is how the scope came about. We left the meeting with a few different things that were going to be done. Some med's eliminated, some new ones started and also GI contacting 2 other doctors from 2 different hospitals to have a NEW pair of eyes look at what's going on with Jack and see if they can offer a suggestion to help our boy. Dr. Phil Putnam, the doctor in Cincinnati who we went to go see when Jack was first diagnosed with ED is one of the doctors to be contacted. We were very happy with that decision.

One of the things that is on the table and we should know by tomorrow is to start Jack on something called GMCSF shots. What this will do is help boost his immune system. This shot is given to some during transplant to help their cells along and this shot is also given to GI patients who have Inflamatory Bowel Disease or Chrons Disease to help with the inflamation. I'm not sure if this is the last resort, but at this point we need to do something. Even though there are signs of his gut getting better, which is what we have been asking for, we still have to get through and get a handle on all the stooling. The more this goes on we are at risk of malnutrition and dehydration again and as Dr. Bunin put it we're at risk of loosing him. The transplant won't make a difference if his nutrition isn't good.

All in all his nutrition is getting better and hopefully we will start to see a change in his stooling. As soon as we start to see a noticeable differance then maybe they will let us go home. Right now there is no discharge in sight.

As always thank you so much for always keeping us in your thoughts and prayers and of course I ask for you to continue.

God Bless!