Journal entry by Jennifer Bacon —
Hello everyone, Happy Spring in Minnesota, where it is currently snowing. I thought it was time to share an update on our sweet guy Brax. Too begin with 1st grade is coming to an end quickly and we are amazed at how far he has grown academically and we enjoy watching him grow and learn more each and every day. His 1st track and field day is coming up and not sure whise more excited! My sweet boy turns 7 in 2 short days and I wish I could slow the time down! We have a fun mother's day/ birthday celebration with family this weekend and than Brax is going to have a bowling party with his friends the following weekend. Overall medically he is doing wonderful, with only a handful of seizures that thankfully are not affecting his daily routine.
With all of that being said we got a call today that we have been anxiously anticipating for a very long time. The call that we have known about and deep inside absolutely dreading as parents for 6 years. I knew it was them calling to finalize the date for his 1st of 2 surgeries. My stomach dropped and my voice cracked when I answered the phone, but the voice on the other side was so calming and kind and slowly went thru everything with me. We have to be in St Paul July 31st for his 4th CT scan and 6th? MRI which he will be sedated for. From there after he wakes we meet with his Neurosugeon and his team to talk over the exact plan for the surgery. We are hoping to spend the night as we have to check into the OR at 6:45 am the following morning for a 6 hour surgery. 6 hours!! This is the surgery that places the electrodes directly thru his skull and into his brain to get a better measure of the seizure activity and where they are "firing" from. From a diagnostic standpoint this is a very important test to finalize the plans for his actual surgery, which is removing a very small portion of his brain. From a parental standpoint however its horribly terrifying. He will stay in ICU after, typically overnight, where than he will go up to the Epilepsy unit. There he will spend anywhere from 10-30 days.
There is absoulutly no way to give an exact date. He once again will wean off all medications and have seizures which will be captured on the internal probes. Being that they're internal we are restricted to the room the entire stay, meaning thay we have to be very creative with our time. We are up open to any ideas for more fun, creative, hands on things to do.
Brax however is excited about the idea of endless screen time 😅 movies in bed with snacks and unlimited room service. Hes so incredibly BRAVE it blows me away. My sweet kind boy says that he loves the hospital and meeting new friends 💖 and getting snacks and ice cream from the nurses. Hahaha Brax! When they remove his probes at the end of his stay it's another overnight in the ICU than homebound to rest and recover and snuggle.
I'm blown away by all the love and support from everyone over the years. We are thankful this part of his "Journey" is almost over and than its onto the next chapter.
Bring on Summer 🌞
With all of that being said we got a call today that we have been anxiously anticipating for a very long time. The call that we have known about and deep inside absolutely dreading as parents for 6 years. I knew it was them calling to finalize the date for his 1st of 2 surgeries. My stomach dropped and my voice cracked when I answered the phone, but the voice on the other side was so calming and kind and slowly went thru everything with me. We have to be in St Paul July 31st for his 4th CT scan and 6th? MRI which he will be sedated for. From there after he wakes we meet with his Neurosugeon and his team to talk over the exact plan for the surgery. We are hoping to spend the night as we have to check into the OR at 6:45 am the following morning for a 6 hour surgery. 6 hours!! This is the surgery that places the electrodes directly thru his skull and into his brain to get a better measure of the seizure activity and where they are "firing" from. From a diagnostic standpoint this is a very important test to finalize the plans for his actual surgery, which is removing a very small portion of his brain. From a parental standpoint however its horribly terrifying. He will stay in ICU after, typically overnight, where than he will go up to the Epilepsy unit. There he will spend anywhere from 10-30 days.
There is absoulutly no way to give an exact date. He once again will wean off all medications and have seizures which will be captured on the internal probes. Being that they're internal we are restricted to the room the entire stay, meaning thay we have to be very creative with our time. We are up open to any ideas for more fun, creative, hands on things to do.
Brax however is excited about the idea of endless screen time 😅 movies in bed with snacks and unlimited room service. Hes so incredibly BRAVE it blows me away. My sweet kind boy says that he loves the hospital and meeting new friends 💖 and getting snacks and ice cream from the nurses. Hahaha Brax! When they remove his probes at the end of his stay it's another overnight in the ICU than homebound to rest and recover and snuggle.
I'm blown away by all the love and support from everyone over the years. We are thankful this part of his "Journey" is almost over and than its onto the next chapter.
Bring on Summer 🌞
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