Definitive Clarification is Coming Soon
Over this past week, Chase seems to be getting back to the stability he had prior to the previous couple of weeks. During that time, he got over his bout with diarrhea, followed by a urinary tract infection and then a staff infection in his lungs. Fortunately, we managed to quickly diagnose and treat these symptoms so that he could get back on track. As usual, his body responded and overcame the obstacles once again. His blood test this week was the best in a couple of months, giving us a strong indication of his continued recovery.
We’re sure that the prayer service helped in boosting Chase again, as he started responding with movements and improved breathing on Sunday and has continued ever since. Thanks to all who joined us in person or in spirit. Chase’s therapists all got strong indications this week that he’s doing well once again.
We conducted an EEG at home last week, in order to try and gain some insight into the function of his cortex and higher brain. We know that Chase’s brainstem is showing signs of recovery (as evidenced by the breathing improvements); however, the cognitive functions remain in question. Unfortunately, when we got the results a couple of days ago we didn’t get much clarification (although it did show beta wave activity that was more than the previous study done in October). Nevertheless, the Neurologist isn’t certain if this was due to the electronic filtration that was used to sort out the artifact in the study.
We discussed these results again with the Burzynski Clinic and they weren’t too surprised with the relatively low brainwave activity. Dr. B felt that this was likely due to the constriction and pressure that the tumor has put on the brainstem, which doesn’t really provide any insight into what would happen once the dead tissue from the tumor is completely resorbed and the related pressure relieved.
We also consulted with the Neurosurgeon who put in Chase’s shunt and he’s still concerned that what transpired during the last hospital stay in October could’ve led to brain death (the MRI at that time indicated constricted bloodflow). Despite the clear indications of responsiveness that we saw after that point, he remains skeptical. The more we discussed this with him, the more clear it became that the best way to “cut to the Chase” would be to conduct another MRI. He feels that this would be able to provide definitive clarification relative to the condition of Chase’s cortex. IF he in fact experienced brain death several months ago, the MRI would show clear indications of the cortex breaking down (essentially dissolving into a liquid throughout the upper lobes). If not (which we believe is the case), then the MRI would show normal cortex tissue and would reinforce our approach of continuing to support Chase’s recovery.
We’re currently making plans to conduct another MRI as soon as practical and we’re really looking forward to getting this clarification. This should provide a lot of relief and comfort either way, enabling us to make the right decisions on which way to proceed with Chase’s ongoing care.
We’re now at the 18 month mark, which is certainly a lot farther than we were told to expect; however, we’re not stopping here. This is coming upon the most critical juncture to date and we need to remain strong in our faith. We truly appreciate all the prayers and support for Chase and our whole family. Chase’s Prayer Warriors have been invaluable to us all throughout this process.
God Bless!!
John & Carol Sammut
Chase & Barbara Ann
We’re sure that the prayer service helped in boosting Chase again, as he started responding with movements and improved breathing on Sunday and has continued ever since. Thanks to all who joined us in person or in spirit. Chase’s therapists all got strong indications this week that he’s doing well once again.
We conducted an EEG at home last week, in order to try and gain some insight into the function of his cortex and higher brain. We know that Chase’s brainstem is showing signs of recovery (as evidenced by the breathing improvements); however, the cognitive functions remain in question. Unfortunately, when we got the results a couple of days ago we didn’t get much clarification (although it did show beta wave activity that was more than the previous study done in October). Nevertheless, the Neurologist isn’t certain if this was due to the electronic filtration that was used to sort out the artifact in the study.
We discussed these results again with the Burzynski Clinic and they weren’t too surprised with the relatively low brainwave activity. Dr. B felt that this was likely due to the constriction and pressure that the tumor has put on the brainstem, which doesn’t really provide any insight into what would happen once the dead tissue from the tumor is completely resorbed and the related pressure relieved.
We also consulted with the Neurosurgeon who put in Chase’s shunt and he’s still concerned that what transpired during the last hospital stay in October could’ve led to brain death (the MRI at that time indicated constricted bloodflow). Despite the clear indications of responsiveness that we saw after that point, he remains skeptical. The more we discussed this with him, the more clear it became that the best way to “cut to the Chase” would be to conduct another MRI. He feels that this would be able to provide definitive clarification relative to the condition of Chase’s cortex. IF he in fact experienced brain death several months ago, the MRI would show clear indications of the cortex breaking down (essentially dissolving into a liquid throughout the upper lobes). If not (which we believe is the case), then the MRI would show normal cortex tissue and would reinforce our approach of continuing to support Chase’s recovery.
We’re currently making plans to conduct another MRI as soon as practical and we’re really looking forward to getting this clarification. This should provide a lot of relief and comfort either way, enabling us to make the right decisions on which way to proceed with Chase’s ongoing care.
We’re now at the 18 month mark, which is certainly a lot farther than we were told to expect; however, we’re not stopping here. This is coming upon the most critical juncture to date and we need to remain strong in our faith. We truly appreciate all the prayers and support for Chase and our whole family. Chase’s Prayer Warriors have been invaluable to us all throughout this process.
God Bless!!
John & Carol Sammut
Chase & Barbara Ann
posted by John & Carol Sammut at 11:39 AM
3 Comments:
I hope you receive positive news on your next MRI. I will pray for you. Sounds like you are a strong little boy. Love, Gina Williams (Brooke's mom)
www.caringbridge.org/visit/brooke1
Dearest Chase and Family,
This is the first time I have left a message but I check on you a lot. I wanted you to know that I continue to pray daily for you. I hope you and your family have a Happy Valentines Day!
Sherry Allen-Princeton IL
I wanted to stop in and let you know I am still praying. I hope you've been able to get that MRI, and that the results are helping you as you plan the course of action for Chase.
Peace,
Carrie Ballenger Smith
Post a Comment
<< Home