Another day another story. Today I received a call from the hospital asking for consent for a procedure: a lumbar puncture. How they got my number and why they wanted me to consent I don't know, but I called mom and told her about it and gave her the number to call back. Dad has run a fever of over 100 for a few days and blood cultures came back negative for infection so the next step was to check the spinal fluid for infection. I don't know how people make these decisions in someone else's behalf. It makes me weak just thinking about all these procedures dad is going through and I know he hates it as well! We see serious progess some days and then the set backs.
On a good note, as Emily and I got to the hospital yesterday Aunt Shirley gave us the report that had been passed on to her from earlier in the day by Aunt Cynthia. The physical therapist had worked with dad that morning and the nurse said from night to day dad had made big progress. His arm is moving so much and he is doing his typical 'dadisms,' raising his eyebrows and rubbing his eye, scratching his head and ear, rubbing his fingers together and exploring his surroundings. A great idea from dad's family was to have a guest book/journal there at his bedside so as people visit and see progress they can make note of it. When you're not there all the time you miss out on seeing a lot so this was an excellent idea.
Yesterday while at the hospital, I received a text from Greg asking how things were going and I decided to call and give him the update. As I was talking on the phone dad opened his left eye wide as an owl and looked right at me. As I crouched down closer to him he followed me with that eye. I was so excited so I told dad I was talking to Greg and then put the phone up to his ear so Greg could talk to dad too. As Greg was talking dad's mouth started to move and he was shaking his pointer finger, another 'dadism'. He was trying to say something and when I told Greg about this action, he replied, "He's telling me to do well son," our favorite dad quote.
Later that evening as mom sat with dad, he again opened his eye for her , got a concerned look on his face and mom saw him mouthing something. She studied his mouth while dad formed the words, "I want to go to the bathroom." As mom said it, "those words were never more beautiful, even from a toddler."
Between dad's three sisters, Carolyn, Shirley, and Cynthia, someone seems to be there just about every morning and Willis comes when he can after work. Mom's siblings and my cousins come often too and we are so grateful for the visitors and the support we feel from them and for all the help we have received over the past 3 weeks. We are so blessed to have such wonderful families!!!
Thursday, June 17, 2010
Tuesday, June 15, 2010
He's moved!
Well it's been a while since I've updated so a lot has changed. Dad had made enough progress to be transferred out of critical care to an acute care facility. He is no longer at IMC, he has moved to a rehab center called Promise. They were so attentive to his needs at IMC so it's difficult to leave that and move to where they are much busier. Since Dad is not as acute as other patients there, he does not get that attention anymore but t he nurses are good.
His first few days at Promise were relatively good. We can tell dad is losing weight because his right hand is so skinny but there is still quite a bit of edema elsewhere. His left side has not moved since the move to Promise and that is a little worrisome, but we are still hopeful as he has started his daily therapy. He spiked a fever of 102 yesterday which they drew more blood to culture to find a source of infection but the results take 3 days. In the meantime it is being treated with Tylenol. They hoped to be able to give him a shower today (and I certainly hope that some good nurse will shave the rest of his hair off, although the mohawk is super cool) but I have yet to head down there to check on things.
The good news is that he is still moving his right hand and foot quite a bit. When mom was there the other day, he was exploring his surroundings with his right hand/arm. He was feeling all his cords, his trach, the bed rail, and trying to scratch his hear where the staff had clamped the O2 monitor. The O2 clamp had been there for a few days and had pretty much pierced his ear. We are not telling dad that he has a pierced ear cause he would probably be a little upset.
He still has a long road ahead of therapy, most likely months but we cling onto the progress we see and measure that in weeks instead of days. Dad continues to fight! We all understand better the definition of "warrior" as we see the strides he takes daily.
His first few days at Promise were relatively good. We can tell dad is losing weight because his right hand is so skinny but there is still quite a bit of edema elsewhere. His left side has not moved since the move to Promise and that is a little worrisome, but we are still hopeful as he has started his daily therapy. He spiked a fever of 102 yesterday which they drew more blood to culture to find a source of infection but the results take 3 days. In the meantime it is being treated with Tylenol. They hoped to be able to give him a shower today (and I certainly hope that some good nurse will shave the rest of his hair off, although the mohawk is super cool) but I have yet to head down there to check on things.
The good news is that he is still moving his right hand and foot quite a bit. When mom was there the other day, he was exploring his surroundings with his right hand/arm. He was feeling all his cords, his trach, the bed rail, and trying to scratch his hear where the staff had clamped the O2 monitor. The O2 clamp had been there for a few days and had pretty much pierced his ear. We are not telling dad that he has a pierced ear cause he would probably be a little upset.
He still has a long road ahead of therapy, most likely months but we cling onto the progress we see and measure that in weeks instead of days. Dad continues to fight! We all understand better the definition of "warrior" as we see the strides he takes daily.
Friday, June 4, 2010
Slowly but Surely
Today is Friday June 4 and there is little progress to report as things are slowly coming along. Dad has been making progress but not as quickly as we would like. He was off the ventilator (breathing machine) for a few days and was doing ok but it was starting to put a lot of strain on his heart so they decided to put him back on. He's been on for about a week and they normally won't keep them on for more than 2 weeks. They've given us a few more decisions to consider. They believe the feeding tube in his nose might be causing the slight infection in his sinuses, so they've talked about putting a port in his stomach for feeding purposes and the second part of the procedure would be to give him a tracheostomy to help him breath. The only thing we worried about with that is whether or not dad would be able to communicate. He is such an articulate speaker and deep thinker that life would be miserable for him if he were not able to convey the things on his mind.
The next issue was that he had been losing quite a bit of blood but were not able to find the source of the bleed. After drawing blood cultures and taking a few xrays, they believed (but still not certain) the source was an ulcer in his stomach. A few bits of bad news had been somewhat discouraging for us, but later Wednesday night our Stake President (who is a Radiologist) came to visit and talk to my mom. He said that whenever the body experiences trauma, it is normal for the stomach to secrete acids and cause ulcers but that was something that was easy to treat with medication. A small miracle happened that same night when my mom was asked to leave about 6:10 (visiting hours end at 6:30) so they could do a few things. When they were done, they let her go back even though it was after 6:30 and she was able to see his eyes flutter. She had been there all day and not seen that, so when she was able to stay late and see that, it was a tiny miracle and a welcomed sign of progress.
Today the physical therapist has been in working with dad, moving his legs and his arms and helping his muscles so they do not atrophy. He is responsive at times to moving his fingers and toes on command, but not always. Today the nurse has told us she is working on asking questions to dad and having him respond with a thumbs up for yes and the pointer finger up for no. So we are also doing the same, trying to get him to keep using his brain and muscles and making those connections.
Slowly but surely he is making progress and we are so happy to see that, but we know we have a long road of decisions ahead of us and we pray we will make the best decisions for our dear father and husband as he has always been our biggest supporter. We Love You DAD!!!
The next issue was that he had been losing quite a bit of blood but were not able to find the source of the bleed. After drawing blood cultures and taking a few xrays, they believed (but still not certain) the source was an ulcer in his stomach. A few bits of bad news had been somewhat discouraging for us, but later Wednesday night our Stake President (who is a Radiologist) came to visit and talk to my mom. He said that whenever the body experiences trauma, it is normal for the stomach to secrete acids and cause ulcers but that was something that was easy to treat with medication. A small miracle happened that same night when my mom was asked to leave about 6:10 (visiting hours end at 6:30) so they could do a few things. When they were done, they let her go back even though it was after 6:30 and she was able to see his eyes flutter. She had been there all day and not seen that, so when she was able to stay late and see that, it was a tiny miracle and a welcomed sign of progress.
Today the physical therapist has been in working with dad, moving his legs and his arms and helping his muscles so they do not atrophy. He is responsive at times to moving his fingers and toes on command, but not always. Today the nurse has told us she is working on asking questions to dad and having him respond with a thumbs up for yes and the pointer finger up for no. So we are also doing the same, trying to get him to keep using his brain and muscles and making those connections.
Slowly but surely he is making progress and we are so happy to see that, but we know we have a long road of decisions ahead of us and we pray we will make the best decisions for our dear father and husband as he has always been our biggest supporter. We Love You DAD!!!
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