Thinking back: Tuesday May 25th.

Knowing how Monday ended I had prayed for a better Tuesday. But not conciously knowing exactly when Monday ended and Tuesday began was proabably my first sign that it was going to be a bad day.

The constant retching. The constant crying. The constant nurse standing over both of us as I worked around Michelle to vent her belly and eventually just put her to a gravity vent to allow everything that was in her belly to just come out so that maybe, just maybe she would stop retching.

Dr. Meltzer came to do his rounds earlier than we are used to. I think the nurse may have had something to do with it seeing as how we had to have paged him at least 10 times during the night. He asked how she was and if I was seeing any baseline at all. I told him no. With that worried look on his face he moved and worked around me to see how she reacted to sudden light, a scream that I had never heard before erupted out of Michelle. He turned the light off and said that he wanted to get a few more tests and have GI come in and see her and then he would come back and talk to me.

In the meantime I asked our nurse to please find us a private room or better room mates as the ones who were with us liked to discuss things that were completely inapropriate for any child no matter the age to hear.

Within 10 minutes of Dr. Meltzer leaving the nurse from catscan came to get us. With Michelle being monitored we needed a constant nurse to escort us to and from places. She was surprised to see us and we have made friends all over the hospital and she happens to be one of them. When we got upstairs I discovered it was a room full of people we knew and who know Michelle. I stayed with Michelle while she got her scan and it took 4 times before we finally got one where she wasn't moving. I remember looking up and seeing the radiologist shake his head and grab the phone. Im going to imagine it was Dr. Meltzer he was calling because right after that he showed up.

He said he wanted to have Michelle's abdomen checked out for a bowel obstruction. With the tubing having been trapped in the scar tissue anything was possible. So we went over to fluroscopy (live x-ray) and they put some barium through her g-tube and watched it move. Or so we hoped it would. It barely moved anywhere. They said they needed more x-rays and to watch her more closely and talk to Dr. Meltzer. While we were hanging out watching stuff move around the Radiologist came in and told me that we were going to the OR and that Dr. Meltzer would talk to me over there.

At this point I was so confused and all Michelle did was sleep and when she wasn't sleeping she was retching. We walked over to the OR and there was Nurse Jackie waiting for us. She was so sweet and so nagging of Dr. Meltzers pager that I promise she had to have had him paged 6 times in 10 minutes. She said she didn't want us waiting too long and that if she nagged him he moved faster.

When he got there that same look that he had the night before was back. Worry. He said that her other 2 shunts had stopped working and that her pressures were dangerously high and that he needed to get in and release the pressure. I of course consented after seeing 3 seperate scans of her brain and seeing the amount of fluid. You could barely see her brain tissue and that was very scary for me. He also said he was very concerned she had a bowel obstruction and would be getting another x-ray while in surgery to rule it out.

Againg I told myself a proximal swich out would probably be an hour this time so I ran and got something to eat. When I got back I was surprised that it had only taken me 20 minutes to eat. I sat back down and I waited. And waited... And waited...

It took them over 3 1/2 hours before I finally saw the OR nurse come out. She didn't tell me anything other than they were all done and that the doctors would be in to talk to me soon. At the time it didn't ring in my head 'doctors". Plural. More than one. When we went in it was one doctor.

Dr. Saenz showed up first. I was happy to see him until he sat down. He told me that he had to help Dr. Meltzer with the surgery and that they had a very difficult time getting the tubing into her belly. He went on to say that Michelle has a larger amount of scar tissue than they had anticipated so he had to try and create a pocket for one of the shunts.

Dr. Meltzer came in right after Dr. Saenz. That expression of worry was back on his face. He sat down and told me that when he went to connect the two shunts as they were before everytime he advanced the tubing into her belly it would stop the shunts from draining so he had to create 2 seperate systems on her right side. That made it 3 completely different shunt systems all doing the same thing. He went on to say that he had to leave one of the proximal catheters in her brain because it was stuck and that he didn't want to cause bleeding by taking it out and that all of the distal tubing was just like the day before. Completely clogged.

Luckily it turned out Michelle's bowel was fine just very slow moving. A slow moving bowel is something I was very grateful for.

After talking to him I felt strangely numb. Like I shouldn't freak out yet because the worst was yet to come. I went back and waited to go to the PACU to see her. When they finally called me back she was awake. And she wanted a popsicle. I told her just as soon as I could get her one she could have it. They gave her some Demerol for the pain and we went to her room just after that.

When we got back to her room she actually was hungry. So we tried some rice and broth and she only ate 2 or 3 bites and then only licked her popsicle like 4 times. I brushed it off as she was still sleepy and probably hurting and I just had her go to sleep. Sleep was something that never came easily Tuesday night. When she wasn't screaming in pain she was retching again.

Again we paged Dr. Meltzer. Again he showed up at bedside at 2 in the morning with that same expression. He said he wanted to try and give her a chance to get some sleep before he did anything else. Again tuesday turned into Wednsday before I knew it.

Thinking back: Monday May 24th.