needed to be Med-i-vacted by Ambulance

[Guest guest]

It has been a crazy few days so this is the first chance I have to

let you know what has been going on with . We had to take him

to the Ped on Thursday morning because the head banging and screaming

got much worse. His neurological symptoms got worse as well. He was

getting much sicker right before our eyes. We got the to the Ped and

she saw that he was severely dehydrated and needed to be hospitalized

immediately! She contacted the local hospital but they had no beds

available. While she was waiting for a bed he got worse and she

decided that he should go to a hospital with a Ped ICU. We left for

Orlando and were about half way there when the cell rang and told us

to head back to our local hosp because that hosp was full too and

they would make us wait in the ER for possibly 24 or more hrs! We

turned around and were back on the highway when 's eyes rolled

back and he became unresponsive and began seizing. We realized that

we couldn't continue driving to our local hosp and wait to be seen in

the ER so we got off at the next exit which happened to be ours! We

called 911 and went by ambulance to the ER. We were able to get him

to a room an hr or so later. He continued to get worse, banging his

head, screaming, panting and having many seizures. The Doc ordered a

CT Scan which ended up showing his sinuses were impacted (filled with

fluid and infected). This is what was causing the pain and the pain

was causing the increased seizure activity. Even though we learned

what the cause of the problems were now, he was still getting worse

and needed more medical care than the local hosp could provide. We

were medivaced by ambulance at midnight to the hospital in Orlando we

originally headed for earlier in the day. We saw a Ped Specialist and

a Ped Neuro who actually studied with Dr Cohen our Mito Doc in

Cleveland so she was well versed in what he could take and what

protocol was needed for his care. I was very impressed by the Ped

too. He was totally on board with listening to what I had to say

about 's care and what I thought was going on and what we had

done in the past for his care--refreshing to say the least!!! I even

told him that :-) He has had experience with kids with Mito so he

also understood that could go from bad to worse in the blink

of an eye so his care had to be monitored carefully and closely. We

stayed for 3 days and I am happy to say that we are home now.

is doing MUCH better and I really think that the combination of meds

for the sinus infection, additional seizure meds, and change to his g-

tube feeds have made a world of difference. We plan to have him

return to the medical school he attended before he started

Kindergarten this fall for a few weeks until he regains his strength

and we see that his immune system is stronger and the seizures are

under control.

Thanks for all the emails and concern, we truly appreciate it.

and Dennis