Location: Oregon, United States

Saturday, July 22, 2006

The Wind-up about William

Here is the short version:

1.) The two prep days before William's procedures were AWFUL!
a.) the medicine made him sick to his stomach
b.) he was down to 88 pounds by Friday a.m.

2.) William has been officially diagnosed with Crohn's Disease.
a.) the procedure went well and we will not have to do it again. Thank you everyone for praying!
b.) we have already begun treating it

Here is the long version:

This is not for the faint of stomach. I just need to write it down for my own good, so consider yourself warned.

Wednesday, we began giving William Magnesium Citrate (nasty liquid) and Dulcolax (pills). He nearly gagged while swallowing the liquid because it tastes so disgusting so we doctored it up with sugar and kool-aid and whatever else we could think of and he choked it down. We had been instructed that he couldn't eat anything but clear liquids after 2 p.m. that day. When it came time for his "last meal", he was so sick already that he couldn't even eat it. Shortly after that, he threw up bile and mucus (all over my arm, which was holding the bucket). I called the doctor's office and was informed by the medical assistant that this was to be expected (Hello! Thanks for the warning!) because the medicine is designed to clear out a blocked system. William has had diarrhea for almost two months now, so his system is anything BUT blocked. The medical assistant also said that we needed to keep on giving him the medicine in order to make sure that the doctor would be able to see what he needed to see once he got in there. Great. He took the medicine and tolerated it better in the evening.

Thursday, I gave him his next dose in the morning as instructed. He did his best, swallowing a little at a time and following it with a "juice chaser". Then he threw up all over the dining room table. I called the doctor's office again, because this time none of the meds had had time to get into his system and I needed to know what they wanted me to do. They said wait an hour and try again. Oh, for crying out loud! Give it a break! So I went to the store, bought more liquid, and figured out that if he could keep half an ounce down every half hour, he would be done by 10 p.m. This worked fairly well for the rest of the day.

Then I went to the place where I've been volunteering and left Paul in charge. Soon after I left, William fell asleep - not part of the plan. By the time I got back, we were two hours behind in doses. Not good! So we talked it over, and decided to try giving it to him every 15 minutes instead of every half hour. And he threw up again, so violently that he also lost control of his bowels. (I warned you!). Now we were behind again, plus he'd thrown up the pills, we needed to wait an hour before we could attempt to give him anything again and we were running out of time (he was not supposed to have anything to eat or drink after midnight). At this point, it wasn't looking like we were going to get the medicine in him. We could only hope and pray that his system was cleaned out enough for the doctor to see what he needed to in order to diagnose correctly. We gave him two more small doses of the liquid before midnight and went to bed.

Friday, William and I got up in time to be at the hospital by 6:30 a.m. for his procedure. I was seriously sleep deprived, but functional. He wore his pajamas. They checked us in and escorted us to a room where they prepped William. A nurse came in and attempted to start an I.V., but because he was so dehydrated, she had significant difficulty. She was also trying to draw blood from the same spot and was unable to do so. Finally, she was able to get the I.V. line in where it belonged and then poked his other arm to draw the blood. I am normally able to watch these procedures, but when she started having trouble and William was in pain, I could feel myself getting faint. So I looked away, worked my legs a bit, talked to William, etc. until the feeling passed. Whew.

After a bit, another nurse came in and brought us down to the room where William would be having his procedures done. As soon as we walked through the doors into the room, I could feel my guard go up. I realized I had been under-emphasizing the fact that William would be under anesthesia for the procedure because it makes me really nervous. There were at least five people in the room making preparations. The anesthesiologist introduced himself to me and asked a couple questions about how William has tolerated anesthesia in the past. The Gastroenterologist was there and asked if I had any last minute questions and said he would come out and share pictures and chat when they were done. (William told me later that he was giving him the evil eye the whole time - he blames the doctor for coming up with the idea to have these procedures in the first place). Then they started a drip through William's I.V. and it was time for me to go. So I kissed William and told him to keep being a trooper and left with one of the nurses. As soon as I got out of the door, I started to cry. Man, that is hard to leave your kid with a bunch of strangers in a surgical room and a mask over his face. The nurse was kind to me and waited while I pulled myself together, then showed me to the waiting room. Ugh!

At the end of the procedure, the Gastroenterologist came out and spoke to me as he had promised. The pictures he had been able to take made it very clear that William has Crohn's. I was just so relieved that he was able to see what he needed to that I almost cried again. (I told you I was sleep deprived!) (I had also been plotting my counter-attack in case William was not cleaned out enough for the doctor to see what he needed. I have firmly decided that there needs to be another preparation protocol for people who have had diarrhea for as long as William has and that surely, there is another way.) The doctor also said that we could begin treating William's symptoms with Prilosec (for sores in his throat) and Prednisone (an immunodepressant, designed to help his body stop attacking itself) the next day! This also almost made me cry. It has been a long time of waiting in order to give him something that might help him feel better and quit losing weight. The rest of our time at the hospital was non-eventful. He woke up, ate a popsicle and some water, rested a bit, watched "The Price is Right" with Bob Barker (!) and went home.

A note about the medicine: The doctor warned us that Prednisone is not something you want to be on over the long haul as it has several nasty side effects. Some of them are: stunted growth, irritability and moodiness, lowered resistance to infections, puffiness, acne, and weight gain due to increased appetite. He will only be on it for a couple of weeks, and then we meet with the doctor to discuss our course of action over the long term.

My initial thoughts re: the side effects were "no big deal" because it is only short term. In fact, weight gain sounds really positive at this point. But he started with the moodiness and irritability yesterday already, and it promises to be a LONG two weeks. He is worse than me with a really bad bout of PMS. Paranoid, angry, blaming, angry, sad, angry, you name it - all bundled into these incredibly intense moments that need to be dealt with RIGHT NOW! Today was much better - we are talking openly with him about how to validate his feelings without validating the intensity of his response. I'm sure we will get through it, and again I'm so thankful to be doing something that is moving toward recovery vs. discovery that this is just a little bump in the road. Thanks again for walking it with me.


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