This past week, Philip finally had his endoscopy that we have been postponing since October.
Unfortunately they found two moderate size varices they had to treat as well as a small one they left alone. So that meant another night in the hospital and a prolonged period without drinking or eating.
We knew this stay would be a little different because he has really started talking a lot and understanding things a lot more over the last few months. I knew it would be harder because he can express what he is feeling more like saying Ouch and scratch when he is really itchy.
We finally got into a room after waiting 5 hours in recovery then were switched to a different floor after a couple of hours in our first room. Once Philip was able to drink he wanted to walk around the hospital floor and didn't want to be in his room. So after making our 10th lap around the receptionist at the front said Hi Philip! Are you having fun? Well, Philip yelled NO! so fast and loud, all of the staff up front were laughing so hard and telling everyone about his come back.
Then our lovely nurse tried to put his baby lo-jack on and he told her to "goway"! I felt so bad but all the nurses got a kick out of him. He then proceeded to tell every doctor and nurse to "goway"! who came to see him. Except for one who came in with doctors and he was screaming to get out of the room and away from them saying "goway". She asked him if he wanted to go to the playroom and he put out his arms and went right to her. This is a kid who is extremely attached. He screams if I go to the bathroom at home and he doesn't see me. He did LOVE the playroom though so that was a major factor in that too. He went to sleep at a fairly regular time and I thought this is going better than I thought, but of course in true hospital fashion they have to come in and do vitals and woke him up at 10:30PM. Recently Philip has a "thing" for pillows and this was the first time they gave him a pillow in the hospital crib. So needless to say he was beside himself that he had a "piwow" and he wanted everyone to know he had a "piwow" at 10:30pm - 1:00am. He repeatedly yelled in excitement "piwow" over and over til he finally fell asleep on his "piwow". Our poor roommate. He probably kept them up half the night. LOL.
The next morning an Asian lady was outside our door speaking another language and I was holding Philip walking by the door. I can see he was interested and he all of a sudden started yelling back at her mimicking the language she was speaking! Like really loud!! I almost died!!
It stinks having to stay at the hospital but his emerging personality gave us some comic relief and makes the time go a little faster. The doctor said we can probably wait til the Spring to do another endoscopy, which is great because I can't do it every 2 weeks again. That was a nightmare.
His liver numbers continue to remain the same and fluctuate back and forth. It's his itching that is the most difficult to deal with at this point as nothing helps. We see the Liver specialists at Mt. Sinai next week so we will see if they will appeal for points or possibly remove him from the list all together. We are just stuck in a holding pattern right now as far as the transplant goes. We'll just keep enjoying his emerging comedic personality in the meantime!
