My tracheostomy experience.

Hi Everyone. Some of you already know some of what I am going to share, but for those that don't I will start at the beginning. I was having increased problems breathing, it became very clear in the late Spring that I was going to have to do something more than a BiPap or my time this side of heaven would be very short. So we decided that getting a tracheostomy and vent was going to have to be done before the summer was over. We put everything in motion for this to happen before I ended up in the emergency room. We contacted doctors and the medical people we would need after the surgery and were approved for the surgery. We had a two day training session in our home and all our kids and spouses took two days off work to attend. We were all trained on how to take care of the tracheostomy and also ventilator trouble shooting and maintenance. This was no sooner done when we got the call there was a bed available at VGH. To give you a brief schedule of what happened.......... I had the surgery July 9th 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 (respiratory technician) 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 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 was 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 a bit 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 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. 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. Since being home we have had our ups and downs, I started suffering from hay fever and ended up with a bad cold. Thankfully that is behind us now and things are much better. Love you all, Joel