Tuesday, July 07, 2009

A Bit Frustrating

Yesterday I had a neurologist appointment. I thought it would just be a normal “Hi How Are You?” appointment. I think the problem started with the time of the appointment which was 2:30. My doctor was running a little behind and she finally saw me it was 3:30. In fact I was so tired I had fallen asleep and must have still been tired when she walked in. The last time I was there, she hadn’t liked the fact that I was having increasing trouble talking. Which we think was caused in part because of the ventilator I was on at the time. Now that we have upgraded the ventilator I find I don’t have to work as hard to exhale and so figured the talking was no longer an issue. However, once the doctor was in the room and I was awake, I still had trouble talking. The doctor decided to test my gag reflex and found that I didn’t have much of a gag reflex.

So now I have to go have a cookie swallow test done and go see an Ear Nose and Throat doctor. The doctor did say that she thinks I have lost ground again these last few months.

Like I say it is all a bit frustrating.

Sunday, July 05, 2009

Busy Two Weeks

This past week and this week have been and will be busy. My doctors have decided my health has deteriorated to the point where I need more help breathing from my ventilator. The ventilator I've used for the past five years didn't have the capability to do what my doctors wanted so I would have to change to a different ventilator. On the surface that sounds easy to me. You order the new ventilator, and swap it out for my other vent. However installing a different model ventilator is a lot of work.

We contacted our medical supply company who sent out my Respiratory Therapist for a meeting. Then the therapist contacted my Pulmonologist to discuss the issue with her. My Pulmonologist had to write a prescription and send that to the medical supply company. Then they ordered the new ventilators. Once they had the new vents they told me that they couldn't exchange them unless I was in the hospital for the first 24 hours on the new ventilator, just in case I couldn't tolerate the new vent. Of course by this time my Pulmonologist was on vacation, when she returned we found out that my Respiratory Therapist had taken a couple days off. Finally everyone was back in town and plans could once again move forward. Now the Pulmonologist had to contact the hospital and reserve a bed in the Intermediate Care Unit for this past Wednesday.

On Tuesday my Respiratory Therapist brought all of the new equipment, and there is a lot of equipment because you need doubles of everything, to the house and showed P and myself how to change out the circuits and calibrate the exhalation valve. I am certain I will need to be shown this again. The Therapist told us to bring the equipment with us to the hospital and to call him when we learned what time we would be arriving at the hospital. He would meet us at the hospital because he would be the person actually switching out the ventilators.

It was on Wednesday morning after we arrived at the hospital and I was admitted, and in the bed, that the next set of problem began. The hospital took the stance that they would not accept responsibility for me if I was on a ventilator that they were not trained on. And remember that the medical supply company wouldn't exchange the ventilator unless I spent 24 hours in a hospital. Everyone was talking and no one was listening. I was really beginning to fear that the hospital would refuse and the medical supply company would refuse to exchange the ventilator and I would have to go back to the doctor and start the entire process over again. I finally made a suggestion. I suggested that instead of having one of the hospital's ventilators sitting in the hall, why not have it sit in a corner of my room. That way in case something did happen all they would have to do would be unplug my new vent and plug in their ventilator. It was kind of funny when I look back on the situation. Everyone was busy talking about why they couldn't do what my doctor wanted. Once the patient mentions an idea, suddenly everyone was quite, listened to what I said again, then tell me that they would come back to let me know what they decided and they all leave my room. Then the nurse came back to tell me that my ideas would work and we could proceed with exchanging ventilators. So I stayed for the required 24 hours and came home Thursday morning.

Then on Friday morning my home health nurse came to change my Foley and the Respiratory Therapist came to deliver a new humidifier and heated circuits because the new ventilator circuits do not have a water trap to catch the moisture that rains out in the circuit. Then shortly after lunch my home aid came to help me get a shower. Saturday, K and C were here allowing C to work on her class work and K cleaned his car and worked on the tandem bike they have stored here.

That was last week, now this week. Monday morning the Wheelchair Repair Company is coming to work on my wheelchair and my Respiratory Therapist is bringing out even more supplies for the new ventilators and picking up the old ventilators. Monday afternoon I have a doctor appointment. Tuesday morning P's niece is coming to visit so I can see her baby and in the afternoon the home aid will be here. Wednesday morning I get a much needed haircut, and again in the afternoon the home aid will be here. Thursday will be a rest day. Friday morning I have another doctor appointment. And in the afternoon the home aid will come again.

What a busy two weeks. I still need to contact someone to make modifications to the ventilator storage box on my wheelchair. However, after these two busy weeks, I am going to wait a bit and recuperate before I start arranging for someone to work on that issue.

I want to add one comment. All my working life I have either been in repair service or a computer programmer. When in the repair service or as a computer programmer, I have always been confronted with a problem and it was my job to come up with a solution. I would think that the people in the medical field would have the same basic job. They would be confronted with a problem and should be able to come up with a solution. I must say I was a bit shocked at what happened when I first arrived at the hospital.