This blog was sent to me by Becky. She told me it was rather long and that I should edit it, but I think it is rather perfect. Thanks, Becky!- Flora
Blog post for June 17 – 19
Alex and the kids and I arrived at the hospital on Tuesday afternoon. Dad was sitting up in his sling chair facing out the window “talking” with one of his doctors. He looked calm and relaxed. He lasted 4 ½ hours in the chair, a new record for dad. Once back in his bed, he wanted us to adjust the call button so that he could push it. He repeatedly pushed it over and over again, like a little kid trying out a new toy! Then he spelled
“Let nurse know light moves each time I test it” - such an engineer :)
He also wanted to know if there was a video camera at the nurse station to see in to patients' rooms to watch people in his condition. There is not. He wanted to tell me about the machine with the blood draw sign on it. “They turned something off” - a sign was placed on that machine to say only draw blood through IV line, as he was stuck 9 times in one day! Ouch! Today (June 19) they were having trouble getting enough blood to fill one tube through the IV, so they might need to revisit this issue.
As I was doing some range of motion with his arms, he was super relaxed and his eyes were rolling into the back of his head. He thoroughly enjoyed it and spelled, “Where you learn do that?” :) It made me feel good to know that he thought I was doing a good job!
On Wednesday (June 18), Dad began weaning (completely off vent with only oxygen passing by his trach)at 12:45pm. He lasted about 1 ½ hours. The daily goal right now is two hours. But I was super proud of him because he was weaning WHILE his 3 good buddies were there from his Train friends group! That takes a lot of concentration to focus on their conversation AND breathe unsupported! Great job, Dad!
Shortly after that, the speech therapist Lindsey came in to try to help dad make some sounds. He said, “Hi” crystal clear and in his wonderful deep voice! After that he tried to talk, but it was high and raspy, and hard to decipher.
Dad also had a Sunday School friend "Lowe" come to visit for a brief period (his wife was having surgery downstairs). He wanted to try the laser pointer glasses. Lowe was standing in between dad and the alphabet sign hanging on dad's wall, and Dad spelled, "move". :) We found it funny.
Dad had a couple episodes on Wednesday evening that startled us. He is doing well now, but when they moved him yesterday to change his bedding, he was having trouble getting oxygen and his heart rate dropped into the 20's. It happened again after that, and then remained stable the rest of the evening. The doctors took an X-ray of his chest and discovered fluid that is causing some of the problem. They increased his medicine to drain the fluid and I can already notice a difference in how he feels. He admitted to anxiety through it all and that it caused him to not sleep well. Mom and I slept at the hospital that night to see him through.
Dad is definitely becoming more frustrated at a lot of things about his situation. Usually his frustration is aimed at the care he is receiving by some of the staff, especially the overnight staff. The doctors address this with him each time they come to see him.
Some things he spelled:
“If left with incompetent tech, then forget it.” - referring to getting a good night's rest.
“Why chest tight? Look at belt” - there was not a belt, but a wire laying across his chest
“Black vinyl necklace on me.” - trach collar tight/irritating
“Night tech don't follow rules”
“I am so glad you are here” - to me :) (Finally something besides “cell phone”!)
“I love you” - to mom
“people and their proven incompetency” - referring to night techs again
Dr Krause will get pictures taken of dad's left eye to send to ophthalmologist to hopefully get a better response. So far they have said, “patch it” - but that doesn't seem like it will FIX IT. It is still red and droopy. He still has trouble getting both eyes to work together to focus.
Today (June 19) Dad had two RT's that worked with him. They are from the main Drake hospital, and were in covering for people on vacation. They told us about a different kind of track called a BLOM trach. It has a symblotic tube that is used to do deep throat suctioning, that would do a type of continual low suction throughout the night making him more comfortable. It also has a speech component that would allow Dad to speak anytime he wanted! What a wonderful hope! Instantly the room felt brighter ;) They will need to replace the current trach soon, and the RT's will communicate with the doctors about trying this new BLOM.
The Morales' are visiting tonight and he welcomed their arrival :) As we were leaving, he wanted to spell desperately. I thought he was going to say, “drive safe” or “love you” or “see you soon”. But no. He spelled
“Piles of crap" – We assumed he was referring to a general state of things. :/ When asked if about staff, care, etc....he said no. And there wasn't any more to his message.
I really get him. I got quite "verbal" too when I was in the hospital for a long time. You are pumped full of meds, nothing seems to be working, and you are just plain sick and tired of the state of things. Your reaction tends to be abnormal to your usual way of handling stress. At least, that's what I think.
Hm. Ah well. Sigh.
We love you Dad.
-Becky :)
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