Set Backs and Steps Up

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!!!

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.

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!!!

Dad (20 photos), by Allison Orton

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Clouds & Sunshine

Yesterday was a gray day: a series of seizures before noon prompted Dr. Reichmann to perform a second procedure to remove another clot. The clot had been there from the beginning, but was located deeper in the brain, and the doctor had hoped that it would resolve itself. The seizures made action imperative.



Swelling in his right eye was a visual reminder of the trauma he has experienced, and he has not yet opened his eyes: he's still in a coma.



The good news of the day was that the surgery was a success.



Today is a better day. The sun was shining as we awoke, and was a welcome precursor for this Sunday. Aimee arranged for classical music in his room which we know he will love. He was able to hold two fingers up on his right hand and wiggle his toes in both feet. He had been able to do this after the first surgery, but lost that ability as the other clot put more and more pressure back on the brain. Where yesterday's regression was so disheartening, today's progress is refreshing and gives us hope. They have told us to expect a rollercoaster. It is exhausting physically and mentally, but spiritually we are strong.

Post Surgery

Upon arrival at IMC, dad was taken to the OR where the surgery was performed. The doc told us it would take about an hour and a half so we decided to go eat lunch. We hurried and ate and came back within an hour but dad's surgery ended up taking about 2 and a half hours. Of course we were all a little worried since it took longer than expected but when he returned from surgery the surgeon came and informed us of the outcome. Things went well. They removed a clot that was 2 cm thick on the right side of the brain and that spread the length of that whole side. (Side note-dad lost 2 coke cans full of blood during the surgery.) We went back to see him after he was settled and saw his bandaged head. Things seemed to be going well so we decided to go home and get some sleep. We returned the next morning around 9:00 and soon after the surgeon came in to check on dad. He said dad looked good and wanted to check a few more things. He put a finger in the corner of his eye and pressed, then said, "Grant I'm going to hurt you for a minute but if you can show me 2 fingers I'll leave you alone." Within a nano second he fired up 2 fingers and the surgeon stopped. He was responding and that was huge:) Later that day they tried to put in a central line on the left side of his chest but weren't successful due to dad's anatomy and bone structure. Between the CT scan, central line trial, surgery and x-rays dad was exhausted and it showed. We left for the evening in hopes he would be able to sleep without too many interruptions.

How this all came about...the details

Disclaimer: This is super long and I'm sure I have missed quite a few details!!

We all know Dad loves to be outside especially when it comes to gardening. Last Wednesday he spent the entire day outside working on his garden in the hot sun. That night he experienced some nausea, which led to episodes of vomiting, followed shortly by a severe headache. Assuming it was just heat exhaustion, I forced him to drink lots of water, but as the days went on, his headache continually got worse. Saturday he was completely exhausted and slept all day. Sunday and Monday he still complained of a headache but not much else. Tuesday morning, Mom took him to his doctor, who diagnosed his symptoms as a sinus infection and sent him to fill prescriptions. He continually got more and more tired throughout the day and when mom and dad tried to make it to Bryn's (granddaughter) dance recital, he threw up again. He so badly wanted to go, but Mom knew he wouldn't make it and figured it was better that they just stay home. Dad was a little chilled so Mom decided to let him sit and soak in the tub and that idea sounded so good to him. Mom filled the tub and when she went back in a little bit later he had thrown up again, so she drained and refilled the tub. Checking on him again, she then realized she needed help. I got the phone call at work around 6:30 but didn't call back until I got off at 7. As I pulled up at the house, Mom came running out saying, "Allison I can't get him out of the tub." I dropped everything and rushed in knowing that I had to keep talking to him so I could get responses! Dad was a dead weight and between Mom and I we could not lift him out. He could not move his left arm and could barely, if at all, lift any other extremity. Emily arrived at the house with Rick, and the 4 of us pulled him out of the tub and sat him in a rolling computer chair. Aimee had called the ambulance and about 2 minutes after we got him in the chair they arrived.

When we asked what hospital they were taking him to, they said St. Mark's. In my head I thought it should have been IMC because I knew they were better equipped to handle the situation. The first miracle was that they took him to St. Mark's and were able to intubate him right away. His heart rate was at 34 and his blood pressure at 213/178 . He would not have made it to IMC with those sats.

After waiting for what seemed like forever (it was now around 10:00 p.m.), the neurologist took us into a room to explain what had happened. We were all sobbing at this time because the doctor gave us no hope. He said he would be surprised if Dad made it through the night because the CT scan showed what looked like either a subdural hematoma or an aneurysm which was putting a lot of pressure on the brain and causing it to herniate down into the brain stem. As many of you know Dad has been taking coumadin for many years due to his heart problems. The coumadin, which thins the blood, may have caused the bleed in the brain, and had thinned the blood to the point that surgery wasn't a safe option. We later found out they had not done that type of surgery at St. Mark's since 1994, which at least contributed to the doctor's discouragement of the surgery. What they did do was begin the process of reversing the effects of the coumadin by giving transfusions and medications to help thicken the blood. They moved him from the ER to the ICU. When we went upstairs to see him, our sweet Bishop and member of the stake presidency arrived and gave him a blessing (which might I add, didn't give us much hope either). With Mark, Dave, and Greg not being close we hoped Dad would hold on until all his sons arrived to give him a blessing. Mark, coming from San Diego, got delayed twice on his flight and Dave, coming from Phoenix, got delayed once. What are the chances? Greg arrived from St. George around midnight after having worked through the night the night before and then stayed up all night talking to dad to make sure he stuck around until the other 2 boys arrived. Finally around 10:00 a.m., all of his children had arrived (the 2nd miracle) and we all sat in his room while the 4 boys gave him a sweet blessing.

Miracle 3 was when my uncle told us of a friend he had that specializes in the type of surgery dad needed and brought that name to the doc at St. Marks. We had all kind of come to terms with (although not ok with) the idea of dad passing quickly when the St. Marks doc gave us no other options and little hope. When Uncle Willis presented the doc with the name and the possibility of surgery at IMC, there was a glimmer of hope which we all felt good about. Michael also had a friend at work that was good friends with this surgeon and had been communicating with him about dad's situation and the timeline fit all too perfectly. A few phone calls were made, first with my uncle Willis and Mike's friend and then to the transport team and dad was out of there within an hour or two. We rushed to IMC and made it before dad and started getting nervous when they didn't arrive for so long. The surgeon had cleared his schedule (dad was critical at this point), and was ready for dad as soon as he arrived. Post surgery report on next post.