The sigmoidoscopy and the endoscopy were scheduled for this morning at 11:30. At 10:15 our transport came and took us down to pre-op. Rafi got her dose of versed to make the trip into the operating room and her time on the table in front of several total strangers in a brightly lit, albeit green, room fun. The propofol and ketamine IV combination was very effective in keeping her sedated and pain free. The first thing the GI doctor did was try to remove the gtube. This proved to be rather difficult as Rafi’s opening into her stomach has healed so nicely and it has actually narrowed. Problem is once we got the gtube out, the endoscope would not fit into the hole so we were unable to look inside the stomach and peer up into the esophagus. I was actually quite interested to look at her esophagus to see what damage, if any, has been caused by EB. We then continued on to the second phase of the procedure, where the GI doctor put an endoscope up Rafi’s lower GI tract to take some biopsies to check for GVHD. This was all accomplished and it was interesting to get a good look inside the large intestines, rectum and sigmoid colon. She, the GI doctor, took 5 biopsies and told me that everything looked great. There were no ulcerations, or damage of any kind, in fact everything looked quite healthy.

When that was done we attempted to put the Gtube back. Well, that was not going to work. The hole had become too small with scar tissue and it was proving near impossible to replace it. The doctor didn’t want to hurt Rafi in any way, so again we had a nice little catch 22. One of the nurses thought of trying to put an slightly larger rigid instrument into the hole to “stretch” it out temporarily. That worked well, so I attempted to convince the doctor to get a new endoscope and let’s take a peak. I was very surprised that she was hesitant to do this and I wasn’t. I figured we were there, Rafi was sedated, doing very well, the doctor was showing a tremendous amount of consideration and care in working on Rafi, so I felt we could go for it. Clearly she didn’t expect this from me and we had to wait for a new endoscope to arrive. After a couple of minutes, the doctor tried to remove the larger instrument from the hole and she got nervous that she may have caused a blister on the outside of the opening. I swear she absolutely got upset at the possibility of creating a blister. So, she didn’t want to wait for the endoscope and thought it best to just replace the Gtube with a new one. So once again, we were unable to get a peak inside Rafi’s gut. While I know she doesn’t read this blog, I would like to tell her that she did not cause a blister. I will pass that on to her through our attending here.

After the procedure we took Rafi directly back to our room here on 5D. She slept for a ridiculous amount of time. She didn’t wake until 5pm. It is my night in the hospital, so I thought I was doomed for a long night. I had the movies picked out, Cars then Kung Fu Panda, then The Incredibles followed by Shrek if necessary. Not quite half way into Kung Fu Panda, she looked at me and said:

Rafi: “Daddy, I’m tired. I lie down now. You lie down with me?”
Brett: “I can’t Rafi, your bed is too small for me and for you at the same time”
Rafi: “OK, I lie down in my bed and you lie down in your bed.”
Brett: “I’ll tell you what, you lie down, I’ll pat your back and then I’ll lie down in my bed.”
Rafi: “OK”

That conversation happened around 9:30. I still can’t believe it.

Earlier in the evening, we got word that the biopsy results came back and there is no GVHD. My shoulders got a little lighter and a big smile came across my face. No GVHD, I really like the ring of that.

As it stands right now, as long as Rafi doesn’t spike a fever, we are home bound on Monday. That will be our 55th day in the hospital. The doctors and nurses here have been great, and Jackie and I have become fond of several of them. We will miss them, but I can’t wait to be home all the time. Here’s one other thing Rafi said tonight that I will leave you with and then I’ll call it a night.

Rafi: “We not home Daddy”
Brett: “No this is not our apartment, we are home for now”
Rafi: “No, Daddy this not home. Home is Minneapolis”

Too funny.

Until tomorrow…………