Life With ALS.com
+ Diagnosed Aug 2005
+ Bipap March 2007
+ PEG July 2007
+ Trache and Vent July 2008
Still Living, Loving & Laughing
To give you a brief schedule of what happened..........
I had the surgery July 9th 2008 starting at 3:15pm , I was awake and conscious at 3:45pm and in my room by 4:40pm. I was suctioned for the first time at 9:00pm.
By 10:00am the next morning they turned my cuff down and I could talk. I was not suctioned at all this day.
I was suctioned a few times on the 11th but experienced no pain or discomfort. I was very surprised at this. The RT was trying to get my tube replaced with a cuffless one so I could go home by the weekend, but I didn’t make it, and since nothing happens on the weekend, we looked to Monday the 14th to have it done. So I had a quiet weekend sitting around waiting. I was suctioned very few times during the weekend.
On the 14th a Dr. came to say Hi and ended up changing my tube – it took about 10 seconds and I felt nothing which surprised me. Now we waited for the discharge team to see us so I could go home. But they didn’t come, a Social worker came and was horrified that I was thinking of going home already, so she put a stop to it temporarily. The one thing they could not understand is that we were prepared for this and that everyone was trained to take care of me at home. I had to explain to everyone, multiple times, that we were prepared and set up at home. Finally the message started getting through.
They never have anyone prepared like we are – we elected to have this happen and didn’t come in as an emergency. We soon had just about every Dr. and Admin. Person come in to verify and talk to me because they were in disbelief. That took 2 more days before they would release me. I would have been home the 13th but there wasn’t an ambulance and RT available at the same time to take me home, so we waited till Thursday morning and were released and driven home in luxury!
I am not sorry I spent 2 or 3 extra days in the hospital because a few weird things happened that taught me a lot and I’m grateful to have had that experience at the hospital as apposed to being home. I learned how CO2 plays into this. I talked too much to many different curious Drs. and nurses explaining to them why we were set up at home so quickly. This winded me abit and I was having trouble catching my breath. It wasn’t until some 12 hours later, in the middle of the night my CO2 alarms went off and the RT stepped up my volume and 2 minutes later I was OK. If your body is high on CO2 it instinctively asks for more air and you breathe faster, but the Vent wasn’t supplying enough. It was slightly uncomfortable for that time as I felt I was gasping for air and wondering whether I was having an anxiety attack. I couldn’t stop trying to get an extra breath. It was good to find out it wasn’t anxiety, it was a high CO2 level.
I realize I’m one of those rare people that don’t need to be suctioned much. Maybe once or twice a day I have to be suctioned. This is an advantage to scheduling a tracheostomy before it becomes an emergency. Things are just so much easier this way. Everyone was surprised at how quickly I healed and adjusted to the tracheostomy and vent.
I encourage anyone with an FVC at 30% or less to do this as it breathes new life into you. Everyone told me I looked ten years younger. I no longer have to wear myself out just trying to breathe. The difference between a vent and a bipap is absolutely night and day. I couldn’t imagine trying to use a bipap 24/7. The vent is just so much more relaxing and I can still talk and eat just like before the surgery. This was significantly easier than I was prepared for.
I thank everyone for their thoughts and prayers. I know it was because of this my recovery was quick. Praise to God for it!
Hopefully this makes sense as it has become increasingly hard to type and use my mouse. Anyone who is considering getting a trach, I urge you to get it sooner rather than later.
The healthier you are, the easier this is.
Love you all, Joel
