If I say my life is boring remind me of last week! For starters the cuff on my trache was letting air past it off and on for most of Sunday. Perhaps I should back up and explain some. There is a tube that goes a short way down my throat. This is held in place by an inflated cuff that keeps the air going into my lungs rather than out my mouth. A small amount leaking is more irritating than dangerous. Attempts by Yuki to adjust the air were futile. Of course it stopped leaking when we called the doctor. After talking with him we all agreed it was probably the valve and could be handled in the morning.
Monday morning I brought Cindy up to date so she could call. First was a call to doctors office to give an update. After the nurse read what the on call doctor had written and added current information I said I wanted to change it today. Skip forward to conversation with doctor, nurse, scheduler etc. and we were scheduled for 3:00. They only had to call us 5 times.
Well that was only the beginning. As planned the men that came to trim the Laurel hedge started their power tools. That irritating noise would last the entire morning so we closed all windows and doors. They needed to have the gate open to cart away the debris. Because Quincy has a tendency to leave when there are loud noises we closed the dog door too. Todd and the boys came over with their non-irritating noise and energy. When the doctor called Todd sent them to the basement. Of course they looked around and found something fun. This was a good thing because it was a paper making kit that had been a possible present but later did not make the cut. Perfect for today. It used shredded paper and water and was fun if Sam would put his hands in. The other two were happy to use the press but thought touching the mixture was gross.
Okay the hedge is being trimmed and the boys were some what occupied. One more phone call. Again it was not a brief call. Medicare had changed the supplier for my food and delivery was going to be today. Since this was the first delivery that meant reviewing all the supplies and confirmation of information. This agency required a signature so someone had to be here. Not a big deal except we did not yet know when the trache change would be. Todd and the boys headed out and I went to finish getting dressed.
Doorbell rings and the house cleaners are here. We often go out on the deck or for a walk to stay of the way.. Fortunately the hedge people were cleaning up and the noise had stopped so Cindy was able to give me lunch outside. Then she tried to eat her lunch. Phone rings. These are the available times for trache change. We select and she keeps the phone with her. A few more bites and doorbell rings and the food is here. Previously we had put it on the bench by the front door when delivered. This man says he will not do that but only slide cases off dolly. She has to figure out where to put it so it will not be in the way for us and the house cleaners. Then she has to use my signature stamp in 4 places plus sign herself. Now back to lunch.
A short time later it is time to head to the hospital for my trache change. There things got interesting. After a brief wait one of the doctors in the group with Dr Libby came in. My first reaction was that he looked young followed by remembering how irritated I got when my mother said that.. Also the fact that my baby turned 40 on Thursday so he probably is young. Anyway back to moment. The doctor was followed by the RT and a nurse bringing the new trache. After reviewing the situation they asked if I usually had any anesthetic. No, because it takes longer and is more uncomfortable to try and find a vein.. The RT removed the air, or at least thought she did, from the cuff. Doctor tried to pull it out several times unsuccessfully. After hooking my air back on he asked if Dr Libby had trouble before. I said yes and that he pulled hard and fast. They both rechecked the external pillow that is supposed to indicate the inflation of the cuff and said okay. He took a breath and pulled hard. It came out out and we all saw the problem. After putting the new one in our attention moved to the old one. The cuff had not deflated. Definitely a faulty valve. In a way it was good because I had wondered what the inflated cuff looked like. Cindy described it best as the size and shape of a marshmallow. After checking to see if I was okay the doctor asked us to stay until the suction showed no blood. Cindy said good because she was worried and hoped I would agree to stay. I said yes because the hospital was quieter than the house. Never thought I would say that! Another bonus was the air conditioning on a 90 degree day.
Okay that was Monday. Now Tuesday. I usually get out of bed when the day person comes in at 8. I know it is late. Well, I needed to get up earlier to get my Monday shower prior to Tuesday appointment. Sherry had not had any opportunities to use the sling to get me out of bed. She did fine with a few hints. This allowed Cindy time to do my shower before the dynavox person came. Who? Dynavox is the name of my computer. The goal today was to try out the eyegaze system before ordering one for me. That attachment and necessary mounting is about $15000 so the communications specialist needed to make sure it worked for me before requesting insurance coverage. We tried several different ways and distances to mount it. Then different ways I could use it. Looking at the letter or words that I wanted worked for me. Then I tried an even better way. This tracked my eye movements and then I could press a switch. Since my left leg is still good I could click with it. I do have to admit that it is fun to see how much my eyes jump around. When asked if I wanted it or if I needed to think about it my reply was I want it yesterday. Me? Impatient? Never! Hah. Perhaps the reason my eyes got tired was because I had played with it. I am already thinking about additional glasses for seeing about 8 inches from my face.
Combined with the effort of trying different systems in the morning and yesterdays activities along with a late lunch I needed a nap. Good thing we both had time to unwind before the rest of the afternoon began. I get a monthly delivery of all the supplies for the ventilator. There are some things that are charged daily, some weekly and some as needed. Cindy was not able to make some of the necessary changes because she did not have the equipment. When the UPS truck drove up she was waiting by the door. When she went through the box there was a couple of missing items. The most important one was the item that is changed daily. Back to the phone to try to get it corrected. They would have someone deliver that. Okay Cindy can at least change the equipment. Soon Quincy tells us that the UPS truck is back. What does he have but the item we are missing. Just to be sure Cindy opens it. Opps, it is now after 5 and the answering service picks up. Then someone is at the door with the missing supplies. As much as would like to say that never got the package we have to admit we did. That evening Sherry and I talked about having her get me up every few weeks so she could be more comfortable with it. Little did we know.
Good thing I rested Tuesday afternoon because Wednesday became interesting. I was not sure if I had heard Sherrys phone ring or if was a dream. Apparently it rang several times. My Wednesday caregiver, Kelsey-Ann, had lost her purse with keys, wallet and phone in it and could not get here until noon. So Sherry had the opportunity to get me up again. After feeding me I pushed her to eat something since she could not have brought anything with her. Morning was good and I went to my nail appointment. Shortly after we got home Kelsey-ann came and we heard the whole story.
Kelsey-ann and a friend had been at one of the concerts in the park. They then stopped at a neighborhood bar for a snack and drink on the patio. When talking with them a woman dropped her glass and a piece bounced up and his foot. When Kelsey-Ann started to wrap it she realized it was deep so off they went to the emergency room. They were there until 4. When helping him get in the car Kelsey-ann put her purse on top of the car. After taking the wheelchair back she drove off. When she realized what had happened she tried retracing her route. Between darkness and lack of sleep she did not find it. She did know she had to get some sleep so could not come to work until noon.
When she came in at noon we heard the whole story, and both Sherry and I went into mother mode without even thinking. Kelsey-ann is 21. We laughed about it later. After hearing what happened my push was getting her to eat and Sherry to call if Kelsey-Ann was too tired. As she ate I heard more details and I could help by loaning some crutches. We took them to her friend before taking Miles to the bookstore.
This was a planned outing so Miles could have one on one time with me and he was looking for two specific books. A coworker of Cindys has boys a few years older and gave our boys books they had outgrown. All 3 boys were really enjoying the books. In fact Sam and Walker often did not have any idea what was going on around them. One series that Miles enjoyed was missing book 8 and 10 so we went to the local bookstore. We are fortunate to have a fantastic childrens bookstore in our neighborhood. Going in I asked Miles if he knew where to look and suggested he ask for what he wanted. The woman checked the area and said they would have to order the books. Miles was ready to leave then. From experience at the library Todd had warned me that if what Miles wanted was not there he would not look at anything else. I think there are others like him because the woman pulled out several books she thought he might like. He gave a half-hearted look. Then I asked what each one was about. Now he had to actually look. Finally I said it would make me happy if he picked one. This started serious consideration and he finally picked one. As we checked out I asked him about the book Walker and Cindy were interested in. True to form he could tell her the title and that it was not exactly the end of a series but about the same characters. After buying the book he started reading in the car and that was the last we heard from him. At home he joined his brothers reading in the living room. After some very active weeks they had all drifted to reading.
The day ended with a pleasant dinner with everyone. That also produced a fun story. Conversation turned to books and what Miles had ordered. Then we talked about the book Walker and Cindy wanted. After Miles said it would be out August 8th Walker turned to Cindy and asked if they could order it. What I said we already did he asked when. Miles said when we were at the bookstore. Walker said when did you go. When Miles said today, Walker replied you didn't go. We all laughed and said yes. Looking confused he once again turned to his mom for confirmation. Then he turned to Sam who also said he knew. Poor Walker could not really believe he did not know Miles was gone. Everyone had teased both Sam and Walker about not knowing if the house was on fire when they were reading. Now Walker had to admit we were right. Sam at least knew when Miles left. Maybe did not know when Miles came back.
With the hectic start of the week laughter was a good ending.
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