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Max came home from the hospital today at about 3 PM. He is feeling much better, and is pretty much back to his old self. He was pretty uncomfortable last night after all of his procedures, and was very exhausted. He got a little morphine at 7 AM and that helped calm him down. He also drank a lot of apple juice. I went home at about 8 AM to shower and by the time I got back to the room Max was feeling much better and was watching a video with Dad. He was walking around in his crib, and trying very hard to pull and chew on his oxygen tube, IV and central line tubes. He also worked very hard walking around the crib to avoid his breathing treatment, which was pretty entertaining.
As for his tests results, we received mostly good news. Max's spinal fluid pressure was well within the normal range and the fluid on the MRI looked good which means he will definitely not be getting a shunt! His lungs looked good during the bronch, but the culture showed some bacteria. It may be from is lungs or his mouth, but to be careful he is getting an antibiotic 3x/day. He is also getting antibiotic ear drops to prevent infection in the new ear tubes.
The thing to worry about now is his spine. Let's see if I can explain since I don't totally understand it myself yet. Like some Hurler children, the "nub" connecting Max's first and second vertebrae is compressed and underdeveloped. Also, the space in which the nub sits is narrow, even for a Hurler child. Both of these can lead to spinal cord injuries so we have to be careful with Max's activities - no gymnastics, sports or things where he may sustain impact to his head. His situation may change over time and there is nothing they can do about now before transplant so we just have to wait and see. It is a bit hard because as soon as we get some positive news something new comes along to worry us.
Tomorrow we have to go to the BMT clinic to meet with Dr. Grewal to sign all of the transplant consents and ask any remaining questions. Max's lines will also be flushed and his dressing will be changed. He is set to be admitted Friday and begin chemo Saturday.
Please pray for Grace's new friend Kendall who was admitted tonight for her transplant for leukemia. She is a great 5 year old girl who is very brave and strong. Grace is going to miss her while she is in the hospital and looks forward to playing with her when she comes home.
-Margaret
As for his tests results, we received mostly good news. Max's spinal fluid pressure was well within the normal range and the fluid on the MRI looked good which means he will definitely not be getting a shunt! His lungs looked good during the bronch, but the culture showed some bacteria. It may be from is lungs or his mouth, but to be careful he is getting an antibiotic 3x/day. He is also getting antibiotic ear drops to prevent infection in the new ear tubes.
The thing to worry about now is his spine. Let's see if I can explain since I don't totally understand it myself yet. Like some Hurler children, the "nub" connecting Max's first and second vertebrae is compressed and underdeveloped. Also, the space in which the nub sits is narrow, even for a Hurler child. Both of these can lead to spinal cord injuries so we have to be careful with Max's activities - no gymnastics, sports or things where he may sustain impact to his head. His situation may change over time and there is nothing they can do about now before transplant so we just have to wait and see. It is a bit hard because as soon as we get some positive news something new comes along to worry us.
Tomorrow we have to go to the BMT clinic to meet with Dr. Grewal to sign all of the transplant consents and ask any remaining questions. Max's lines will also be flushed and his dressing will be changed. He is set to be admitted Friday and begin chemo Saturday.
Please pray for Grace's new friend Kendall who was admitted tonight for her transplant for leukemia. She is a great 5 year old girl who is very brave and strong. Grace is going to miss her while she is in the hospital and looks forward to playing with her when she comes home.
-Margaret
posted by Mike Ciacciarelli
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