Hi Y’all,
Sorry about not posting last night. Was a bad day for me healthwise. I couldn’t seem to get my bloodpressure up. It was very low all day. I just didn’t have the energy to even attempt to type on the keyboard last night.
Anyway, yesterday was kind of a bad day. School went well, but then when we got to hyperbarics things just seemed to fall apart. Once again what we were told and what happened were two different things. Last week, on Friday, when Charlie’s graft was done, we were told that they would do another graft yesterday. So we got there for hyperbarics (28 minutes early. On Wednesday we were scolded for not being able to do the whole treatment and then told get there as soon as we could on Friday and they would get us in so that Charlie could get the full treatment done.) and were told there would be a 40 minute wait. That wasn’t a good thing. Then they asked what was supposed to be done. I looked at the tech and said “We don’t actually know. On Wednesday they said that it would be grafting again but I don’t know if they intended to do that and hyperbarics.” The reply I got was “Hold on and I will check with the nurse and the doctor to see what is supposed to be happening.” Charlie and I waited about 10 minutes and the tech came back and told us that the doctor said there would be no grafting, only hyperbarics. They would leave the graft alone for another week. I then questioned why we were told they would be doing another grafting yesterday. Then one of the nurses came out and in kind of a gruff manner told me in no uncertain terms that the grafting will be done at the second week and that’s all there is to it! Well that set Charlie off. He felt that he was spoken to in a rude manner and he made sure that everyone knew how he felt. Then the Medical Director came out and he and Charlie had words then too. The director made it seem like it was our fault that there was confusion. NOT OUR FAULT. Like I said, I had not felt well all day, so of course I started to cry. I was frustrated and was trying to calmly talk with the doctor and explain the frustration. He didn’t get it. All he had to say was “you know how I feel about y’all. I am trying to treat you and get you well so that you can get your kidney.” That was it. No listening to what I was saying, just a lot of really frustrated people in a not so large space with a bunch of other patients sitting there listening to what was going on. It was a mess.
Now, All we want is a treatment plan. We just want someone to write down what is going to be done when we come in. I don’t want to have to tell them what they are doing for wound care anymore. They always have trouble finding Charlie’s chart when he gets there, seems like if you know a patient is coming in then the chart should be pulled and readily accessible. All of the information is also supposed to be in the computer. I am just not getting it. I have asked repeatedly for the treatment plan in writing so there is no more confusion. I don’t know how else to deal with this. It is INCREDIBLY FRUSTRATING, for both Charlie and myself.
Then, to top it off, I called the transportation people to verify that they would be starting the new wheelchair van pickup on Monday afternoon, and was told I better make reservations with VIA! They weren’t sure if the van was going to be ready. Now we have been waiting for the van to be painted for over a week. Everytime we get the go ahead to not schedule VIA they change their mind. It was 4:50 when I called them and I was told that they would contact the person in charge and then call back to let me know what was going on for Monday. I wound up calling to VIA and having to schedule a time that may not work. IF they come 10 minutes early (their new rule) then we will miss them and Charlie will be counted as a no show. They wanted him to leave class 15 minutes early, but I said NO! So we have a pick up scheduled, now I just have to pray they can’t come early! I called today and spoke with the “man in charge” at the transportation company (at 8:15 this morning) and he was on the way into the office and would call back within an hour. Well, it’s 4:47pm and I haven’t had a call so I called him again. He said he must have been dialing the wrong number. Anyway, he said that the painter said he needs to go over the job again. It’s an EMS logo on a van, not the Sistine Chapel!! It’s been over a week now and he is saying maybe Monday morning. So the “man in charge” has assured me that they will pick Charlie up on Monday after school and take us to hyperbarics. He said call the office on Monday morning at 9 and schedule it. So we will see what happens. Not going to cancel VIA until I get a confirmation that this is for real now!
We wound up at hyperbarics until 6:15 last night. So we were gone from home for 12 hours. Both of us were tired. The whole encounter at hyperbarics wiped me right out. Charlie was a little better but his back was sore from being in the wheelchair for so long. The ambulance transport brought us home and I had to go in and move the cat to the bedroom. I walked in the bedroom and there, on the carpet, right at the bathroom door, the cat had left a gift. Apparently he couldn’t go 2 more feet to his litterbox. LOL…what a way to end the day!!!
Things seem to be going much better today. My bloodpressure is still a little low, but I am taking it easy. Charlie had dialysis this morning and things seemed to have gone smoothly there. He is napping now and should be up in about an hour and a half. Our granddaughters were supposed to come over tonight but their mama is sick. No worries, we are going to do the visit next weekend instead. We just want mama to get better, she sounds dreadful!! Better safe than sorry as far as the germs go, we don’t need to have Charlie come down sick right now.
Well folks, I think that’s about it for now. We have shared the frustrations of yesterday with you and ask that you join us in prayer over them and a solution to them. Please pray also for Charlie’s foot and healing to happen there, For fundraising ideas and opportunities, For School, For a kidney or a live donor.
Once again I ask that y’all pass this on to people that you know, family, friends or whoever. You never know who might be wanting to donate a kidney or become a live donor. If you know anyone and they would like more information please have them contact us and we will be happy to share contact info so that they talk with someone who can answer their questions.
Blessings to all.
Charlie & Sherrie
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Tags: Communication, dialysis, Financial Assistance, fundraising, helphopelive.org, kidney, live donors, organ donors, Prayer, words of encouragement