Our Upside Down World

[catcaniac]

I haven't posted on here in a while. Things have been crazy. I fired the one nurse I discussed on my last post. Haven't been sorry for it one second. Things have improved there. Week before last, I was preparing to go back to work. My first day back was August 17th. As of last Saturday, it was the only day open without a nurse on my August calendar. I thought, great. Eric seemed to be doing well, so I was excited about returning. Saturday the 13th, he had a visit from Eric Montross, a former NBA player who now announces for the UNC Tarheels. Eric knew him before and it was a great visit, even though, of course, Eric could say nothing. He had a wonderful day. He had just finished his third round of IV antiobiotics in the past 2 months on the Wednesday before. That Wednesday we actually took our first ride with the new power chair to the doctor about 45 minutes away. The nurse and I felt like we were preparing for a camping trip with all the packing we had to do. Extra vent circuits...back up batteries, meds, pads, urinal, etc. Eric did wonderfully and was in his chair from 9 in the morning until 5 that evening. Well, then on Sunday, our life went nuts again. He started off the morning with a 99.8 temp and a heart rate of 115. From there, things just got worse all day, until by 7:30 that evening, the temp was up to 101.8 after Tylenol and his heart rate was alarming at over 150 bpm. Needless to say, we made our 3rd call to 911 this year. Back to the hospital again. The doctors now seem to think that maybe he has had a touch of pnuemonia since back in May. He is constantly colonized with Psuedomonas and has also had Klebsiella in his sputum cultures. He has been on a consistent tidal volume of 600 and 15 bpm for over a month. On Tuesday, I left him at the hospital with his mom, only to come back and find that they switch him straight from those settings to 6 bpm and a tidal volume of 900. Eric was freaking out so they basically drugged him with Ativan to calm him down. They said they wanted to open up the partially collapsed part of his lung (been that way since March apparently) so that they could try to clear up the pnuemonia. I have been working and split my time between the hospital. We finally brought him home last night at 7 and I had a nurse till midnight. My body is shot. After the nurse left, he slept for a while then wanted to turn over. I thought I had the eyegaze working for him but awoke at 2 am to find oral secretions had completely soaked the bed. Every 30 minutes from then on, I was awake suctioning. I am thinking. Crazy new life for me. Work from 6:30 am to around 6 pm, Mon thru Fri. Then Fri and Sat night, stay up half the night caring for him. Then spend my weekends trying to finish work for school. He has had a PICC line in since June. He will be on IV antibiotics until the 27th. Then we probably have 3 or 4 days before his fever starts and we go through the same cycle again with antiobiotics and trying to avoid 911. Wow, this is starting to feel normal. Only with ALS can we accept almost dying on a weekly basis and the norm in our life.

 

[dian_na]

I can certainly relate to what your saying. Its a rollar coaster of emotions and fighting to keep your body going and his. Mom did that last year in seemimg to keep pneumonia I began giving her NAC and it really helped clear it up. I also quit suctionig her so much and that also helped. The more you suction the more thats needed. Now she's down to being suctioned 4-5 times a day.
I gotta say right now she does have an infection somewhere, not sure where.

 

[Zaphoon]

Cat',

Thank you for the update.

All I can say is thank you for all that you are doing for Eric. I don't know how you are managing to do it all. Blessings on you and may you find periods of rest for yourself!

 

[tomby]

Wow, that is a heavy load. For you both. Please take care of yourself too