Since last post, sorry for the delay, we had much going on.
On Tuesday Willem had a new GJ tubes put in and it was a success. Since that procedure he not thrown up once.
We are truly grateful for this. The ONE tube is in place in his small intestine and through it he is getting his nourishment and meds continuously and consistently. This is critical to his improvement. The other tube is in his stomach area near his duodenum (if not in his duodenum). Through it he is getting the medicine that will hopefully shrink the stricture cased by the HLH. The doctors are watching this closely and will do so for about a week and then do another "contrast" study to see if it has improved at all. At this point he is unable to eat any "real" food until this stricture opens. Will keep you posted on this critical issue.
Since the procedure he is walking a lot more, school work has picked up, and he was able to go a field trip to Party City and buy weapons of mass destruction for his "Scream" Halloween costume, and go home for a couple of hours after that on Friday. This tired him out, but he had a great time. He slept the whole way back to the hospital.
Although Willem is improving he has a long way to go until he is out of the woods and out of the hospital. He will not be going home anytime soon, but the docs have given us permission to schedule more field trips out of the hospital. Tomorrow he is going to church and his Sunday School with Lili and Wyatt which he is looking forward to for sure.
Monday is the hospital Halloween Party then out to his neighborhood for a short bit of actual trick or treating. To say he's excited is an understatement.
Keep him in your prayers and know he is getting the best care in the world. More on that next blog.
ake care all and go hug your kids and/or grandkids everyday and tell them how much you love them!
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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