Weekend Get-away

Last Friday night we were using the lovely cough assist machine but we weren't able to get all of the junk out of my chest. This had not happened before so after an hour we decided to take me to the ER so that they could suction it out for me. I was naive in thinking that they would suction me using a fancy cough assist and that we would be home within two hours.

One positive aspect of respiratory issues is that you don't wait in the ER line and you are automatically whisked into an ER room where I learned that they suction by putting a tube down the nostril through the back of the throat... without any anesthetic. By the way, when there is a tube in your throat it makes it even harder to breathe. They did an x-ray to make sure I didn't have pneumonia which I expected. But I did not expect the EKG or the Cat-scan to rule out a pulmonary embolism (Because there was blood on the tube when they removed it from my nose).

Between midnight and 2am we went from my being kept over night for observation to a pulmunaligist wanting me moved to ICU. We got to the hospital a little after 10pm and by 11pm they had the list of all my medications and we had brought my medications but they wouldn't let me take what I brought because it had to come from their pharmacy. Also before I left the ER they knew my IV had broken and leaked and it was suppose to be replaced so I could be put on fluids.

To make a long story a tad shorter I was basically moved from the ER to a regular room and then to the ICU all between 10pm and 6:30am without my IV being fixed or being given any of my pain medications which I need at night when I'm in bed stuck in one position.

When my ICU nurse came on at 7am I apologized to her to begin with but then unleashed. I let them know they were lucky I had ALS or I would have yanked the IV and monitors off of me and would have walked out of the hospital because I was so furious!

The nurse was very empathetic and took care of all of my needs/requests. After getting my meds I was much more calm but still unhappy about being admitted into the hospital.

On Saturday afternoon the Pulmanolgist put a camera down my nose down into my chest to look at my lungs to check for mucus levels...this was with anesthetic and after I made the hospital page my neurologist before preforming the procedure. The scope came out clear but he wanted to keep me one more night for observation...Again I was very unhappy!

While there I was also visited by the nutritionist and the speech therapist to evaluate whether or not I am aspirating due to what I am eating and drinking. In the end I got them all to agree not to change anything since I will see my own crew at clinic this week.

I was eventually discharged Sunday afternoon around 1pm, not a minute too soon! No one seems to realize how quickly my muscles weaken when I'm out of my normal routine. I have just started to feel like I have regained my strength that I had before I went to the hospital.

Clinic this week should be interesting after this past weekends events, in addition to the numerous changes I have had over the last six to seven weeks.