Living life with Duchenne Muscular Dystrophy and working towards maturity in Christ.
About Me
- Dwight
- West Palm Beach, Florida, United States
- I am 37 years old living in South Florida with Duchenne Muscular Dystrophy. I want this Blog to be a place for people to see that it is possible to still enjoy your life to the fullest despite a disability but at the same time to see some of the challenges.
Tuesday, July 31, 2007
8 Random Facts
I was tagged by Scott from Scott Sands Alive to play a little game called 8 Random Facts. In this game you are supposed to put a blog post on your blog with 8 random facts about yourself. After you do this you are supposed to tag 8 more bloggers to do the same thing. Since I only know a few bloggers and Scott already tagged these people I am simply going to post my 8 random facts. So here goes.
1. I am a Cleveland Browns fan (please keep your snickering to a minimum)
2. I believe in the power of energy when it comes to healing
3. I was once told I would never be able to eat again but was able to within a few months
4. I once met three actors from the X-Files
5. I usually hate doing lists like this
6. My great-grandmother contacted me after her death
7. The best concert I have seen is a tie between U2 and Roger Waters
8. I lived in Canton, Ohio for 12 years and never once went to the football Hall of Fame.
Monday, July 30, 2007
A scary situation
Since I had had my bronchoscopy I was having trouble with the high-pressure on my ventilator going off. The doctors said I probably just had some plugs that need to break up. I guess when they look around down in my throat and chest there was a lot of old stuff that they needed to get out and not to mention the trauma created by the poking around. And I did get quite a few large plugs of mucus and old dried up blood.
Then on Friday things began to get quite a bit worse. It started out with a lot of stubborn suction. Then it became more and more difficult to even use the ambu bag. At one point it would not work at all but luckily I repositioned and was able to get a little air. We figured the trach was probably blocked.
On this particular day it was just me and the nurse at the house. My fear was that if she took the trach out and it was something more than simply the trach tube being blocked I would have been in real trouble. So we called 911 and she bagged me with great difficulty until they arrived. At one point my oxygen went down into the 70% range. After the fact my nurse that day said that if the paramedics had taken any longer she would have had no choice but to stop bagging me and just change the trach.
So the paramedics come in and one of them takes over bagging me while my nurse gets ready to change my trach. As soon as it was changed it became easy to bag me and my oxygen saturation went quickly back up to near 90. After all that of course it took quite a while to get back to my normal range of the high 90s.
After taking the trach out you could see how it was completely blocked in the end. And after sticking something through it we discovered that it was pretty much blocked through the entire tube. We ended up putting in a smaller size trach that I was using before the doctor told me to use the bigger one. I decided to let my through heal and keep the smaller trach in for a week and then I will try to put the larger trach back in.
Monday, July 23, 2007
A successful procedure
After about six months of not being able to get anywhere when it comes to taking care of the problem of my butt everything seemed to happen quickly within a two-week period. Anyway, to make a long story short I went to the hospital on July 12 for an outpatient procedure. I was scheduled to get a colonoscopy, bronchoscopy, and have what the doctor called Sentinel tags removed from my rear.
The anesthesiologist had me have a very quick EKG followed by a stick to get my potassium level. The potassium was a little low but not so low that they could not go through with the procedure. The potassium was probably low because the day before I had to take a great amount of laxatives to prepare for the colonoscopy. And the EKG showed one or two irregularities. The one type I already knew about from the cardiologist but the other one was the first I'd heard of it. Because of that I have appointments to get more blood drawn and see the cardiologist later this week.
Since it is difficult for them to start an IV on me they first gave me some gas when I got into the OR. They said that way my body would be more relaxed and the gas would dilate my blood vessels to make it easier to start an IV. It only lasted about 5 or 10 seconds before I was out but that gas was pretty trippy. At one point someone walked by and it appeared as if they had a trail behind them.
My colonoscopy was clear, they removed the skin on my butt and did a bronchoscopy. When they did the bronchoscopy they replaced my Shiley 4 trach with a Bovina 6. I guess they had some trouble doing the bronchoscopy though. First they tried going through my nose, and then they tried going through my mouth, and when that did not work they finally took my trach out and went down that way. So when I came out of surgery there was a little blood in my nose and my tongue was swollen to the point that I could not keep it in my mouth. They even gave me some sort of steroid to get the swelling to start coming down.
I thought that the bronchoscopy would have been the least of my worries given the other problems. The doctor was concerned after the bronchoscopy though. He said cancel I basically don't have any muscle or fat in my trachea, so it is basically just an open hole. The concern he seemed to have is over time possible perforation. Definitely not a pleasant sounding way to go. Since his specialty is not necessarily the trachea area he told me to find a specialist. Actually, all this information is second hand so I will know more when I go to my follow-up appointment on Wednesday. I was still out of it so the doctor explained everything to my family first.
Since this is something serious it is a very good thing that I started having trouble with my low pressure alarm right before I was to schedule the procedure. Otherwise, I would have no clue about this possible problem.
I do not know exactly what type of position they must have put my neck in but it is still bothering me. It has gotten a lot better over the past week and a half but not back to normal yet. It took me about four days before I was able to finally get my stomach to stop bothering me after the procedure. My digestive system was basically empty so as soon as I was able to get a good amount of food in me things started to get much better. My butt was sore when it came to using the bathroom but today started to get better with less discomfort. Now I just need my neck to completely stop bothering me and find a specialist for my trach.
One little bit of good news is that a good friend of mine is going to come for a visit August 6. She is only staying for 2-3 days but it should still be a nice visit. Now I need to plan some things to do.
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