Just a quick update in hopes that sharing bad news will turn our karma back around. Just a few days after I posted the last blog gloating about Nathan’s good health, he became ill requiring constant use of oxygen, suctioning, and TLC. The urgent care docs initially diagnosed him with pneumonia, but the pulmonologist disagreed. So, we put him through painful shots of Rocephin (1 in each thigh) at the urgent care center and then put him on another antibiotic which caused horrible diarrhea - all for nothing. Turns out he has a bad bronchial virus which has landed him back on constant oxygen and landed me back in battle with Apria, our DME provider, to get oxygen delivered, fix Nathan’s malfunctioning pulse oximeter, and deliver his other needed respiratory supplies. Arggg!
In the meantime, we started the new seizure med (the one that can cause blindness). My mental timeline was to give it 1 month and if there was no significant improvement we would take him off of it to preserve his vision. It is impossible to reach any conclusion when Nathan is sick as the seizures are usually much worse when his body is stressed. So, while Nathan has been battling a fever on and off, he has also been battling absolutely miserable seizures. In between, we will have a good day where we see only very small tonic seizures and think that the new drug is working. But my conclusion after 2.5 weeks on the med is that I have no idea if it has or if it is going to help at all. We don’t want to throw in the towel without good data, so I guess we will have to leave him on the med for longer to monitor.
Lastly, many of you have asked about Nathan’s surgery. It was scheduled for today – Feb 1st. But the illness has set us back at least one month. He will not be cleared for surgery until he is off of the oxygen for several weeks. No one knows when that will be since rebounding is tough for him. We will wait and see and keep all of you posted.
Oh – and one last complaint while I'm venting. My health insurance company dropped the Rehab company that has provided every last piece of rehab equipment for Nathan – wheelchair, hospital bed, shower chair, gait trainer, stander, etc. for the last 5 years. All of these items require constant maintenance and adjustments by trained technicians. The company we were working with was not spectacular, but it will not be easy to start over after 5 years. Nor will it be easy to obtain maintenance on our current equipment. I tried to schedule a wheelchair adjustment last week for his armrest that is jammed only to be told that the earliest will be mid-March. Huh?? Are they serious?? What about Nathan's arm?
WHO MOVED MY CHEESE?
Please keep Nathan in your thoughts and prayers for a rapid recovery / seizure improvement and me for the strength and patience to deal with all the health care bureaucracy while worrying about Nathan every second. Thanks for tuning in and following Nathan's journey. Nathan is blessed to have such a supportive network of friends and family.
