Yesterday Willem was allowed to leave the hospital and visit Art Prize which is a city wide art project with over 1500 artists from around the world displaying every type of art imaginable Check it out on line artprize.org.
It was a total surprise to him as a couple of days before he had asked "M", his beloved grandmother, if he was going to be able to go see it. We told him probably not and he responded, then please take a lot of pictures. We did him one better!
It was a sunny and hot day (80 degrees) and off we went. There were thousands of people roaming all over downtown GR and this caused him some concern. After being in a very confined well defined environment for two months and suddenly being outside with all these people, it was a bit overwhelming. He was a trooper as usual and we saw a number of the highlights and took lots of pictures. His mom, brother, and sister all went as well. The most frustrating thing for Willem was the smell of street food vendors on almost every corner. We have been very careful not to eat or drink in front of him in the room, but the real world is just that. He smelled hot dogs, pizza, etc. and wanted some of all of it. After two hours we were back in the room. It was a great outing and hopefully the beginning of more to come!
He threw up his NJ tube again on Friday night, but it was replaced within the hour so we did not lose any ground on his reintroduction to food. He is now getting 14 ml/hour of broken down formula (Similac in the amino acid state), 15 ml/hour water ( Try it-it's not much), and the last couple of days he has been getting one of his pill meds with apple sauce (the treat of the day). Yesterday he was given the ok to have four (4) small containers of applesauce or pudding (his choice is applesauce). So far so good. It is times like this when we realize this is not in our hands and we have to practice acceptance and patience. both easier said than done as most of you know.
He is now being given a new steroid to hopefully shrink the swelling in his gut area. The major problems he has is the stomach is not emptying into the small intestine and the first 20 cm of the small intestine are inflamed and in a couple of spots very constricted which means he eats then it sits in the stomach and eventually come back up. We feel we are on a good path at this point and it will be Weds. or Thursday before we are able to see any progress. This repair is critical so we can continue his trip back into the world of whole food, which means nourishment and self sufficiency.
A quick word about the staff at Helen DeVos Chldrens Hospital- Awesome, kind, attentive, communicative, available, involved, caring... the list could go on. Thank you to the DeVos Family for caring for kids!
Take Care and please keep the prayers and thoughts heading our way- it is appreciated.
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.
No comments:
Post a Comment