-
My Weekly Journal – 09/03 Through 09/09
Monday, September 3, Through Sunday, September 9 – This is one of those weeks that I never want to repeat again in my life. On Friday, August 31, my caregivers returned home from their family vacation. My primary caregivers are a husband-and-wife, whose daughter used to be my primary caregiver. They always go on vacation every year as a family and when they returned, they both noticed that I didn’t look like myself. Earlier that morning, I had a sore throat that slowly progressed through the day, but when I woke up on Saturday, the sore throat was going away. Saturday was pretty uneventful with regards to activity around the house. We went out and got some lunch and brought it home and about an hour after lunch, I began running a low-grade fever. It wasn’t one of the normal low-grade temperatures that I might run, it felt different. I don’t know what it was that made it feel different, I just knew it was. Within thirty minutes my temperature went up nearly a full degree, so we decided to call an ambulance so that they could take me to the hospital just to get checked out. When the ambulance came to get me, my temperature was 100.3°. By the time they got me loaded up and transported to the hospital, my temperature was 103.8°. Doctors immediately took me from the emergency room to the intensive care unit at Baylor Scott and White Medical Center in Irving Texas. It took the doctors and nurses around two hours to bring my temperature down to 101°, and after accomplishing this, they began running all of their blood work and other tests needed to try to determine exactly what I had. When the diagnosis came back, doctors came into the room and told me that I had pneumonia. I knew then that this was going to be an uphill battle because pneumonia by itself is tough to get over, but if you couple that with having spinal muscular atrophy and an already weakened immune system, this was definitely going to be a fight that I had to be ready for.Everything seemed to be going well until Sunday, around 3 o’clock in the morning. My temperature spiked from just above 100° to 104.8°. It was around 2:30 in the morning that I started complaining about getting cold and the nurses in the intensive care unit immediately started removing some of the covers that I had on. This went against everything that I had heard. I’ve always heard that when your fever starts to go up, you cover-up to get warm to hopefully start sweating which will break the fever. It wasn’t long after this happened that my temperature spiked. The temperature was so bad that it literally shut my eyes. The throbbing going on in my head was nothing compared to the heat that was coming off my body. My head felt like it was going to explode and even with my eyes shut, I knew that there were doctors and nurses running around me trying to get a handle on my temperature. I remember the nurses telling me to open my eyes and to stay awake. I felt cold compresses being applied to my underarms and to my crotch. They do this because these areas are temperature sensitive points in the body that they target to bring down a temperature. If you would’ve asked me, I would’ve preferred the temperature rather than the ice cold compresses they were shoving at my crotch. This entire routine took nearly 5 hours to bring my temperature down. Once my temperature was down to a manageable level, doctors transferred me to the cardiac care unit where they could monitor my heart and my respiratory conditions. It was in the cardiac care unit where doctors began having me take respiratory therapy. The respiratory therapist would come in and do two different types of breathing treatment, along with a percussion therapy on my chest to loosen any phlegm that had accumulated in my lungs. These breathing and percussion therapy sessions happened every four hours all the way up until 11 o’clock in the evening. They would then resume at 6 o’clock in the morning and this would continue every four hours throughout the day. The nurse and the tech would come into the room every two hours and lift my legs up to my chest to cause positive pressure to help me cough and get up all of the mucus that had built up in my lungs. While it felt good to get all of this stuff out of my body, it really did a number on my rib cage. Either way, no matter how bad it hurt, it had to be done. The next 4 days, the hospital took blood samples from me enough times to make me feel like a pincushion. I asked doctors about putting in a pick line or even a midline so that they can retrieve blood without having to jab me each and every time, but they said that most of these blood draws had to come from different points in the body because they were also checking for blood gas and other antibodies. By the time I got out of the hospital on Wednesday, the tops of my hands made me look like an extremely unsuccessful meth addict. I actually did the math before leaving the hospital and it turns out that I got blood drawn from the top of my left hand fifteen times and ten times from the top of my right hand. They also put an IV line in my tricep in my right arm along with a midline on the underside of my right arm bicep muscle so that they could have an extra line just in case something happened to the IV. On Wednesday, the doctor came in and told me that all my blood work looked good and that if I was feeling up to it, I could go home. Trust me, I was ready to go home so I took him up on his offer.I was hoping that getting home would be exciting, but it turned out to be one of the biggest challenges that I’ve had to face in quite some time. I didn’t realize just how much the temperature in the illness took out of me. All the strength that I gained over the past year and physical therapy had diminished to nothing. My breathing was shallow and very labored, like I just run a marathon. The frustrating part was that there was no answer as to when and if my strength was going to return. Wednesday evening, all day Thursday and all day Friday were moments in my life that I never want to live again. Most of you know that I’m very excited about the strength that I gained and my overall physical condition, but even I was scratching my head trying to figure out what it happened. Friday evening, when I went to bed, my caregiver had to disengage my electric wheelchair so that he could roll me into my bedroom to put me in my bed. I didn’t even have the strength to push the controller to drive my own electric wheelchair. I could tell that I was really beginning to get depressed about this, but I’m lucky because the caregivers that I have are extremely positive people and they both told me that things would get better, I just had to keep my faith in my Lord and Savior Jesus Christ and that my weakness was probably do to everything that I just experienced and went through. On Thursday, I emailed Laura, my physical therapist, telling her that I was going to need a few weeks to make my recovery. To be honest with you, I was actually scared that I might not ever be able to do my physical therapy again if my strength didn’t return. I knew that Laura would tell me that everything was going to be okay, but I was also scared that being away from her from as long as I had been, that I was probably going to have to go back to my doctor and get another prescription and we were going to have to start the entire process all over again. On Friday afternoon, I received an email from Laura and she told me not to worry about anything and to focus on my recovery. She said that whenever I’m strong enough, I can come back and the only thing that she would have to do is to reevaluate me and we could start as if nothing had ever happened. Saturday morning when I woke up, and I went into my office and got on my desk, I noticed that some of my strength had returned and Saturday actually turned out to be one of the best days of my life. Knowing that I got just a little bit of my strength back gave me reason to believe that my body just needed more time to recover from everything that it had just gone through.Over the next couple of weeks, I’m going to take a small hiatus from doing my videos so that I can focus on my recovery. I will update my journal every week so that everyone can follow my progress and I’m hoping that after a couple of weeks of recovery, I will be able to not only resume doing my videos, I can also resume where I left off before I became sick. Please check back each Sunday for an update on my condition and I ask for your continued patience and prayers. Please do something for yourself this upcoming week it’s going to make you a better person, and remember, please take care of yourself because believe it or not, you may have more people depending on you then you might think. I had to find this out the hard way. Gob bless. -
4 Replies
-
What a week! I’m sorry you had to go through all that, but I can relate. I had pneumonia earlier this year, and it took a good two weeks of recovery to start feeling somewhat normal again. I also only spent a few days in the hospital, but the recovery at home was just as intense. My days were spent attached to my vest, cough assist and suction machines coughing up phlegm.
My best advice is to not push yourself too hard in the coming weeks. Pneumonia is no joke, and it’ll take time for you to feel yourself again. I also felt that same regression and fatigue, but it will get better in time. Definitely praying for you brother.
-
Thanks Kevin. I’m a bit more optimistic now that my strength is slowing returning. I’ve never been a patient person, I want results yesterday, not today. Laura, my PT, said to go slowly. Anyways, thanks for the words of encouragement.
-
Glad to hear you’re on the mend. Every time I’ve been in the hospital with pneumonia it’s taken a lot out of me. Somewhere I heard it takes a week to recover for every day in the hospital. Not sure if it’s true, and it’s probably longer for those of us with SMA. I’m thinking it was so good that you had been doing therapy prior to this event. Going into it stronger has to be beneficial. Here’s a timely SMA News Today article that might explain some of what you’re feeling: smanewstoday.com/2018/09/10/inflammation-infections-may-contribute-to-severe-sma-mouse-study-shows/?amp&utm_content=buffer3f100&utm_medium=organicsocial&utm_source=facebook.com&utm_campaign=buffer
Hopefully with Spinraza you’ll be able to rebound even better.
-
You may have a valid point DeAnn. My PT may have actually benefited me in my recovery. My doctor gave me levoFLOXacin for my pneumonia antibiotic. This stuff is vial tasting. If I were the pneumonia virus, I’d run from this stuff too, lol…. Thanks for the article as well.
Log in to reply.