Kim and I sold the house in Mechanicsburg and closing is 4/10. Movers will be coming on 4/6 to pack us and 4/7 to move our belongings into storage. We have been looking for a house in State College but the market is a tough one. We will stay with my mother in law until we find something that will work for us.
Most of the week before and after my NeuRx diaphragm pacing system and PEG feeding tube surgery on 3/3 I spent a lot of time on Facebook asking for prayers and neglected my blog. I was very nervous as I only had one surgery previously and it was outpatient. I have included those posts here for readers who aren't my friends on Facebook. I was overwhelmed by the response of my Facebook family keeping me in their prayers!
3/2
Tonight we drive down to Mechanicsburg to get ready for my surgery Tuesday morning at 7:30AM to have a feeding tube installed as well as a diaphragm pacemaker to help my breathing since ALS has weakened my muscles.
If all goes well, I'll be back in State College Wednesday afternoon/evening and back online Thursday. I am scared.
Prayers requested for me, my wife Kim, our families, and the doctors, anesthesiologists, and caregivers at Hershey Med Center.
3/3, 1:49PM (we were at the hospital at 6, surgery was scheduled to begin at 7:30AM)
in my room, some discomfort, mostly because nothing to drink yet and can't breathe through right nostril. this too shall pass. your prayers took away my fears and helped me through it. love and thanks to all!
3/3, 7:04PM
Had a major pain spike in my left shoulder just after Kim and Kelly left (the diaphragm is connected to the shoulder?) that was a 10 out of 10 but Nurse Mindy came in and gave me something that stung when it went in my IV but quickly took the edge off and back down to a 3. Nurse Hannah worked the night shift and male nurse So came in the morning. All were very compassionate and caring. They closed my door to block out the light and noise to help me rest better. The hospital is not a good place to try to catch up on sleep!
3/4 7:29PM
Got home to State College at 2:30 today. The 2 hour drive on rough winter roads left me stiff and in a lot of pain. Had some dinner and moving around a little bit and feeling better. Still having severe pain in my left shoulder from the air pumped into my abdomen for the laparoscopic diaphragm pacer procedure, and the area around my feeding tube is very painful. Very grateful to be home and for the outpouring of all the love and prayers from my Facebook family! Dozed only briefly last night so a few hours of sleep tonight should help tremendously!
3/5, Noon
I slept well last night, up several times for meds or to go to the bathroom, but able to sleep deeply and dream. Your prayers work, and I thank you all from the bottom of my heart. Pain is much better today.
3/6, 6:16PM
Didn't sleep as well last night, afraid I wouldn't make it to the bathroom in time. Things finally resolved themselves successfully mid morning and I am feeling so much better I stopped taking any pain meds. Three successful tube feedings today so far and doing my second diaphragm pacing session now. When the pacer fires it feels like a rotary phone dial being turned in my lower abdomen. Have to do it 4-5 times a day and at the end of 4 weeks they want each session to be... a minimum of 2 hours each session.
Fourth quarterly ALS clinic is next week and they will check all of my surgery "scars" and make any necessary adjustments to the feeding tube and diaphragm pacer.
Will provide some updates and post some pictures of my new appendages on my blog this weekend. Thanks again for all of your loving and prayerful support for me and Kim and our families this week!
3/7, 10:46AM
Will provide some updates and post some pictures of my new appendages on my blog this weekend. Thanks again for all of your loving and prayerful support for me and Kim and our families this week!
3/7, 10:46AM
I slept much better last night! Dealing with several issues. First is sinus congestion. Needed to sit up straighter last night to breathe better.
Second, the recliner I'm trying to sleep in is manual, not quite long enough, and the lever is on the right. I have trouble working the mechanism since my right arm and hand is the weaker of the two. Also, the back doesn't lock in one position.
I slept good for more than 2 hours then woke up around 11:45 and watched the clo...ck for a few hours trying to get into a comfortable position and breathe through my nose. Around 2AM I got the leg rest down without waking Kim and went to the bathroom. When I came back to the room I decided to leave the recliner upright and pulled the office chair over to support my legs and feet. After that I slept well until 8:30 when I got up.
Second, the recliner I'm trying to sleep in is manual, not quite long enough, and the lever is on the right. I have trouble working the mechanism since my right arm and hand is the weaker of the two. Also, the back doesn't lock in one position.
I slept good for more than 2 hours then woke up around 11:45 and watched the clo...ck for a few hours trying to get into a comfortable position and breathe through my nose. Around 2AM I got the leg rest down without waking Kim and went to the bathroom. When I came back to the room I decided to leave the recliner upright and pulled the office chair over to support my legs and feet. After that I slept well until 8:30 when I got up.
Kim was happy since I didn't have to interrupt her sleep for the first time since I came home from the hospital. :)
Going to have to decide on a hospital bed or an electric recliner designed for sleeping.
Hershey Medical Center Experience
Overall, I had a very good experience with the surgery and hospital staff! I had a fair amount of pain but they took good care of me. The NeuRx DPS representative was very informative and we felt comfortable with leaving the hospital to return home. They sent us home with a week's supply of bandages, alcohol wipes, gauze pads, and a month's worth of formula (Nutren 2.0) for my feeding tube.
I woke up with a girdle on in my hospital bed to keep everything buttoned up and protected and only stopped wearing a girdle today after my shower. I now have a Velcro PEG Tube strap that keeps my tube coiled up and contained.
4th ALS Clinic on 3/10
Kim and I drove down Tuesday night and spent the night at our house in Mechanicsburg. She had arranged for the 2 potential movers to come and do an estimate for packing and moving our household into storage for up to 5 months. Unfortunately one of them showed up 2 hours late so Kim wasn't able to go to clinic with me. It was a very long afternoon. I was at the clinic at 11:10 and didn't get home until 4:30PM! And didn't have anything to eat the whole time I was there.
Both my PEG feeding tube and DPS surgical scars are healing very well. I thought Dr. Raheja would crank up the power on the DPS higher than the initial setting in the hospital but she indicated we would wait until my post surgery check on 4/11.
Because I have the most trouble breathing at night, they are ordering a bipap device to use at night to improve my sleeping.
Going to have to decide on a hospital bed or an electric recliner designed for sleeping.
Hershey Medical Center Experience
Overall, I had a very good experience with the surgery and hospital staff! I had a fair amount of pain but they took good care of me. The NeuRx DPS representative was very informative and we felt comfortable with leaving the hospital to return home. They sent us home with a week's supply of bandages, alcohol wipes, gauze pads, and a month's worth of formula (Nutren 2.0) for my feeding tube.
I woke up with a girdle on in my hospital bed to keep everything buttoned up and protected and only stopped wearing a girdle today after my shower. I now have a Velcro PEG Tube strap that keeps my tube coiled up and contained.
Home health care stopped in on Thursday to teach us how to use the PEG feeding tube and my weight is starting to stabilize. I lost more than 20 lbs in 2 months, which wasn't good. I now get 4 tube feedings a day of a carton of Nutrena 2.0, which is 2000 calories. The rest I try to get from eating, although I can only eat soft or blenderized foods at this point. Home health care will now come on Mondays and Thursdays to check in and see how we are doing.
I still suffer some left shoulder pain throughout the day, but it is nowhere near as bad as last week. I still have some extra gas in my chest that doesn't belong there and the diaphragm pacemaker can aggravate it also. Apparently there are nerves between the diaphragm and the shoulders and stimulating the diaphragm muscle with the pacing system can aggravate the shoulder nerves. I have to work up to 8 hours of pacing by the end of week 4 and then they will start raising the current level on the device. Eventually I will be using it fulltime.
Kim was very tentative helping me at first with cleaning surgical sites, feeding, and taking care of the DPS, but after a week and a half is very experienced, unafraid, and efficient.
Kim was very tentative helping me at first with cleaning surgical sites, feeding, and taking care of the DPS, but after a week and a half is very experienced, unafraid, and efficient.
4th ALS Clinic on 3/10
Kim and I drove down Tuesday night and spent the night at our house in Mechanicsburg. She had arranged for the 2 potential movers to come and do an estimate for packing and moving our household into storage for up to 5 months. Unfortunately one of them showed up 2 hours late so Kim wasn't able to go to clinic with me. It was a very long afternoon. I was at the clinic at 11:10 and didn't get home until 4:30PM! And didn't have anything to eat the whole time I was there.
Both my PEG feeding tube and DPS surgical scars are healing very well. I thought Dr. Raheja would crank up the power on the DPS higher than the initial setting in the hospital but she indicated we would wait until my post surgery check on 4/11.
Good news is that my lung capacity is about 72%. It was 84 in December. When they tested it pre surgery they measured it at 52. Apparently that is because my mouth doesn't make a strong seal on the breathing device, which is similar to a toilet paper tube roll. We used a mask yesterday to get a more accurate reading. So my forced vital capacity score didn't go down as much as originally feared.
My legs, hands and arms are noticeably and measurably weaker. My right hand strength measured 40+ pounds in December and was 20+ yesterday. I can barely write my signature and using a mouse and keyboard is much more difficult than it was. My left hand is still much better but hand strength dropped from 80+ pounds to 60+.
Physical therapy has proposed switching from the cane to a rollator walker since my legs and arms are weaker.
I talked to the doctor about a release to allow me to return to work part time next week but am still waiting for the release.
The past 2 weeks were the longest I went without a shower or shaving in a long time. Hope to get into a more regular schedule soon. Kim was sleeping across the hall for the first week but has moved back downstairs to allow me to sleep in the upstairs bed. Sleeping separately is very difficult for me but I recognize that it is best for Kim to allow her to get enough sleep.
