The Wedding Weekend

My youngest son’s wedding was this past Saturday and what a weekend it turned out to be.

It all started about three weeks ago when we called my medical supply company and order oxygen for the weekend. Even though the wedding was in Chicago about 1 ½ hour drive from where we live, we decided to stay in a hotel in downtown Chicago. Staying there would allow me to be driven to the hotel and rest up from that drive. Also all of my siblings were staying at that hotel giving me the opportunity to visit with them. Then on Saturday afternoon, I would be driven to the church, about a half hour of city traffic.

Earlier in the week of the wedding my wife called the medical supply company to check that everything was ordered and that the oxygen would be at the hotel when we arrive. That was when we began to be worried. The office that normally would deliver the oxygen to the hotel was being closed and it deliveries were being done by another office of the supply company. So Friday morning P once again called the medical supply company to make certain the oxygen would be there when we arrived. She was told that it would not be there when we arrived but would be there within an hour of our arrival. So P filled two portable oxygen tanks and we left home and drove to the hotel.

When we had arrived and check into our Handicapped assessable room we discovered that I couldn’t get into the bathroom. So P called the desk and they found another handicapped assessable room, one that I could get into the bathroom. However, this move almost made P late for the wedding rehearsal, so she left me in the care of our nephew T. Because the oxygen had still not arrived, I asked T to call the medical supply company to make certain that the delivery was on the way. After lengthy phone calls with the company T told me that our local office had contacted the Illinois office and assured me that it would be delivered. However as a precaution I turned down the amount of oxygen to a setting below what I need, thus extending the length I would have oxygen. When P returned from the rehearsal the oxygen still had not arrive, so she called the company's after hour’s number. Finally when the delivery person called back he basically told P that it was late and he really didn’t intend to make the delivery. After many phone calls to the after hour’s number and to the delivery person he consented to making the oxygen delivery. However, by this time I was out of oxygen and was beginning to feel the effects of not having enough oxygen. Finally at 12:30 in the morning he showed up with the tank of oxygen. It had taken over eight hours of phone calls and arguing to get the oxygen delivered.

That morning, the morning of the wedding we woke up to beautiful weather, the sky was clear and you could see for miles. P and daughter K left for a breakfast with the bride and the ladies of her family. I spent the entire morning in bed resting. We left for the church early that afternoon. I must say the wedding was just wonderful. The minister had a homily about the meaning of marriage. She mentioned how impressed she was with how the young couple K and C had become involved with the church and the various activities of the church. It was a short ceremony but a nice one. After the ceremony the newlywed couple climbed aboard the tandem bicycle they had bought used and cleaned up and repaired for use in the wedding. As they rode away from the church to start married life, people across the street from the church stop and took pictures and clapped. The reception was at the church and by 6 PM everyone was back at the hotel.





On Sunday morning everyone crowded into our room to visit.



Then slowly everyone started to leave and head back to their homes. We were the last ones to leave for home. I was exhausted by the time we arrived home and spent the rest of the day in bed resting and recovering.

What started out as a disastrous weekend, ended up as a wonderful weekend with wonderful weather for the wedding, allowing the tandem bike ride. I liked the symbolism of the tandem bike because a marriage is like riding a tandem bike. For it to work well both people have to work at it.

More Doctor Appointments

I have often thought of the different relationships I have with my six siblings. I love them all very much, but the relationship is different with each of them. It just so happens that I always seem to go to my younger brother after receiving upsetting news from my doctors. What follows is a letter I wrote my brother after my latest doctor appointment.

Well it's happened again. This past Wednesday I had a 3:15 neurologist appointment. The appointment wasn't the problem; the problem was the time of day 3:15 PM. And it just so happened that Wednesday morning at 11:30 both the home health nurse and the home aid showed up. So even though I had taken two naps one after breakfast and one after lunch, I was exhausted by the time we arrived at Dr. H's office, about a 5 minute drive from the house. I don't suppose the fact that I had a Dr. K appointment on Tuesday afternoon, that took 3 hours from the time we left the house until we returned, helped how I felt.

It also didn't help that I have begun having trouble keeping myself upright in my wheelchair. So I have begun to use the gait belt not only in the van, but also when I have to be in my wheelchair for a long period of time. When in my recliner, I have it tilted back, so I don't have to work to keep myself from collapsing forward.

So Dr. H thinks the time has come to look into a tilt wheelchair. However, the last time they put a tilt seat on this wheelchair base, it made everything so high that I had trouble getting into the van, and it was too high making it impossible for me to get my knees under the table or vanity in the bathroom. It also was too long causing me to damage the walls in the house. I am not looking forward to this wheelchair battle. I just know that no sooner will we get through the wheelchair battle that Dr. H will start telling me I need to stay in bed and have someone come in to help with mid day meals. This is beginning to feel like a long, drawn out, never ending war. As soon as one battle is finished another one appears.

When I was back in the waiting room, while P was with the doctor getting some prescriptions and getting the next appointment set up, that the doctor told her that there is nothing else the doctors can do. Now the treatments will be for quality of life. I have thought this for some time now; however I don't like to hear the doctors confirm my suspicions.

So as usual after a Dr. appointment, I am upset. I am upset at being so constantly tired. I am upset that everything is so much work now. It is an effort, not a big effort, but still an effort to move my arms. However, on the bright side, my legs aren't much of a problem, they don't move much anymore. And I can still win at level 7 Sudoku in an average of 23 minutes. I still sit and talk to family using either email or Instant Messenger. I've also found Hulu.com so I can watch some television shows that I've never seen before.

Telling a Yarn

I love reading Britt-Arnhild's House in the Woods Blog . It is part of my morning routine, part of my armchair travels. A couple days ago she posted about “A Corner of my Studio” in which she tells about making her now husband a hand crocheted quilt for his bed.

Her post started me thinking of hand crocheted quilts, Afghans or throws. My mother seemed to always have a bag with her and she would always sit and either knit or crochet something. Whenever mom and dad would visit she would get settled in a chair and start working on the latest project. Always after she and dad left, we would find little bits of yarn on, in and around the chairs she had used during their visits. I am certain all of my brothers and sisters have memories of mom and her bag of yarn. And even though my mother spent the last couple of years in a nursing home, when we cleared their house after dad died, we found bits of yarn way down in the chairs.

Shortly after I had my tracheotomy, a rather large package arrived in the mail. When I opened it there was a beautiful handmade Afghan. It was from my wife’s cousin. She had made it just the right size to place over my legs when I sit in the wheelchair. She said in the enclosed noted that this Afghan was an expression of love for her to me. My mother in-law also loved to make Afghans. She would make one for each of her grandchildren. For many years we had one of her Afghans over our living room couch.

Then about two years one September day I was sitting in my chair and the front door opened and in walked two older people. It was a man and his wife from one of the neighborhood churches. It turned out that a couple of days earlier they were going door to door in our neighborhood passing out information fliers about a daycare at their church. When they saw my sign on the front door inviting people to knock and walk in because I am in a wheelchair making it hard for me to get to the front door, they said they just had to return and visit.

We had a wonderful visit talking about many things. Than just before they got up to leave, they gave me a hand knitted or crocheted blue and white Afghan. It turned out that their church had a group of ladies who get together on a regular basis and make these Afghans to be used as welcome gifts when church members visit people of the community for the first time.

I wonder if the room these ladies meet in has bits and pieces of yarn floating around like our rooms did after a visit from my mother.

What a morning

Wow what a morning. Yesterday we switched out ventilators and replaced the circuit, something we do every 15 days. However, last night after switching the vents the vent seemed to be giving a lot of "Low Pressure" alarms. So P and I switched me back to the other vent and retested everything on the vent that seemed to be having excessive "Low Pressure" alarms. Everything checked out so we switched back again.

This morning when I got up I felt terrible. I had no energy, and was just dragging. When I transfer to my recliner, I have to switch the vent from external battery power to the house AC power. As I was doing that I glanced down at the vent and noticed that last night when we were changing and exchanging vents, we had not reconnected the oxygen to the vent. Which meant that I had spent the entire night without sufficient oxygen? So I connected the oxygen to the ventilator and after 1/2 hour I started to feel better.

However, that isn't the end of the story. After transferring to the recliner, I always have to connect my vent circuit to the humidifier which means I also have to connect the circuit heater and sensor cables. I must not have gotten the heater sensor cable connected properly and the heater started to alarm. Between my low oxygen level and all the alarms, I ended up waking P up and asking her to get me a new heater sensor cable. When she walked into the den with the new cable I started to disconnect the heater sensor cable from the humidifier, I must have moved it enough to actually have it make a connection because the alarms suddenly stopped. Turns out I didn't have it pushed in all the way into the connector.

Now everything has settled down. The sun is shining, the windows are open, I hear the birds outside, and Life is wonderful.