When we last left Willem he had had his NJ tube removed and his new GJ "button/tube" surgically placed with tubes fed into his intestine and stomach. Well, he started to vomit with greater regularity on Saturday and did so throughout the weekend. He also told staff that the button bothered him with a "stinging type pain". Yesterday they did an upper GI test with greater contrast and found that the tube into the intestine had in fact come unraveled and was in the stomach and that the stomach tube was clogged. No wonder he was in great discomfort and his body was letting him know about it.
Today under light sedation they will remedy both of these problems and hopefully we can move forward. He has been having his stomach "drained" intermittently by suction as well. When last visited last night at 7:00 pm he was sleeping comfortably. His procedure is at 2:30 today and without complication should be done in 1/2 an hour or so.
During this time of extreme discomfort his walking has almost stopped, school work the same, and he was depressed over the weekend. This was a point of concern on Sat and early Sunday. When visited Sunday evening he could not stop talking and did not want me to leave at 8:30 pm. He fell asleep shortly after that, which is a good thing because my bedtime is 9:00!
Willem is the most courageous person I have ever known.(in fact one of his nurses in ICU said just that when he moved out of ICU and she has been an ICU nurse for many years- Her comment "Willem is the strongest kid I have ever seen in ICU") He has endured more stuff than any 10 year old ever should have to. He has done so for the most part without complaint and with acceptance. His depression over the weekend is understandable. He is sick and tired of being sick and tired, we all would be at this point. This whole thing started on July 30 with "achy" muscles and here it is October 25! You are my hero Willem.
We have seen incredible progress in and toward recovery for sure. Hopefully this latest snag can be remedied today and we can continue on our path to getting him home. We seek and need normalcy as any of you reading this can understand.
To that end he is going to go to Sunday school this week, go trick or treating as "Scream", and go to the Halloween store we did not get to last Friday. Keep him in your prayers- powerful and needed.
Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.
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