I want to start this post with the disclaimer "Alex is good." We have a diagnosis and while I wish he wasn't fighting anything it's a relief to know what is going on with him.
So backtracking, end of May or beginning of June, Alex was feeling bad and was an absolute slug. He lost energy around dinner time every night and was constantly cold. When we went on vacation to Texas I discovered he was running a fever every night but in the morning it was gone. He was having trouble in the bathroom but that is almost a given for him so I wasn't even factoring that in. He has had bouts of constipation and then diarrhea for years and we've just medicated it and blamed food.
Mid June he had his yearly well child check up and he was not well. Since his last check up he had lost eight pounds or 13% of his bodyweight. Then we mentioned his fever and his general feeling of yuck. His doctor took blood and the next day referred him to children's mercy because of high levels of inflammation and anemia.
The next week we meet with a pediatric GI specialist, Dr. Patel and she orders more labs. His levels were very worrying and she was debating at that time hospitalizing him but since he wasn't in pain she scheduled a stool lab and a colonoscopy for him. His original colonoscopy was scheduled for September and he was placed on a cancellation list.
A week after that Dr. Patel called because his stool test was again off the charts for inflammation. She didn't understand how he wasn't in constant pain. On Monday she scheduled an emergency colonoscopy for Wednesday.
I must have been in denial because I thought we would have this test and be feeding him chicken nuggets on the way home. His prep for the test was rough and he wanted 20 chicken nuggets as soon as he was done.
His test was not good, his GI tract was inflamed and full of ulcers. He was admitted immediately. They had to wait for pathology but they were pretty sure on visual it was Crohn's disease.
The pathology came back yesterday and it was Crohn's and Kelly and I got what his treatment plan is until they find a cure or a medicine that can treat him at home.
The medicine he needs can only be infused at this time so his new normal will be a medicine infusion every 4 to 8 weeks depending on labs and how he feels.
This was all a lot but there are bright sides. His disease is treatable. We know what his disease is. The doctors said there is nothing he ate or did that caused this and we caught it exactly when we should have. That last one was a lot for me, a mom who wondered how you let your child get this sick. Turns out this is how you find out your kid has this, they have their first really bad flare. Who knew?
Fingers crossed Alex gets out of the hospital tomorrow or Monday and thank you to everyone who helped us when we needed it. I love my support system that includes family, friends and co-workers. ❤️❤️❤️
Final plug to all the doctors and nurses we have worked with. They have taken such great care of him I want to cry thinking about their kindness and dedication. Alex when you look back at this I want you to remember the names of your day nurse and night nurse that you loved. Micala and Amanda are CMH rockstars.
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| He wanted a chess board right away. He beat me everyday, never got old for him. |
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