Tuesday, November 6, 2018
Sorry for all the late post
I have been super busy with Lee, and getting back to work. I don't know how many people are following all of Lee's adventures but this helps me to keep track of his ups and downs and one day after he is well again it can be printed to be a journal of his journey. I make no promises to keep it up to date but I will eventually update as I can. Thank you all for following.
Roller coaster ride after going home
Lee was doing so well at home, working with home health, doing the stairs well and just enjoying life at home until one day he was just so miserable he could not take it anymore. On October 22nd we brought Lee to the ER here in Murray, they did a paracentesis and drained 2700 off of his belly and did some cultures. The following day we were in the liver clinic and that is when we found out that Lee had a viral infection and that is why he was feeling so poorly. On October the 26th Lee went in for another paracentesis and they drained 4100 ml of fluid off of his belly. Later that night Lee began to throw up blood, so back to the ER we went this time he was admitted to Utah Valley hospital. On October the 27th he went to endoscopy and they found he had a Malory-Weiss tear.
While they were looking for the bleed they dislodged his feeding tube, they were able to replace the tube but once again had to suture it to the bowel. During his stay he took a shower and flooded the shower room which is across from his room, so he flooded his room also. He did well and toward the end of his stay began to have tremors we all thought it was from the morphine he had received for a couple of days. Lee cane home on Halloween day. Although we enjoyed the trick-or-treaters, they made Sadie have a bad day.
October 3rd was just a bad day in general Lee's tremors were severe and his confusion was out of control. He had not slept the entire night and was up and down about every 15 minuets. This ran Linda ragged because I was at work and she was on night duty with Lee. I slept some of the day and then made the choice to bring Lee back to the ER at Utah Valley hospital. He was admitted for suspected infection and encephalopothy. While he was in the hospital he was not improving at all, he was admitted on Saturday November the 3rd and on Monday the 5th we convinced them to transfer him to Murray to be admitted to the liver team. They did another Paracentesis and ran a bunch of cultures of their own, the final verdict was sever dehydration and infection. After 12 hours of fluids Lee is more himself, still a little confused and some slight tremors but doing so much better. Today Linda and I were brave and rode the front-runner train it was actually really nice to be able to just sit and relax on our ride to the hospital.
The Plan from here is to send Lee home in the morning, his hydration level is improving and he is currently sleeping. I just have to tell you about a few things he did when he was so out of it, first the ugly, he was not very nice and it was usually directed to me. I love him and I know it was not him truly just the illness and encephalopothy. While in Provo he had a taped on Pulse ox monitor he kept asking the nurse for a pair of pliers to "get this damn thing off my finger" then he ripped it apart trying to get it off. Another time when he returned from a paracentesis he told the staff "they used a hammer and screwdriver to get the fluid out." Once we got him here to Murray his nurse said " I need to see your IV" Lee looked at her and said "ain't I Ivie enough" Linda and I were sitting on the couch laughing at him what a silly man. At one point I reached over and touched his arm Lee grabbed my hand and shoved it away and said "Sadie has a cold butt". Then a few minutes later I was sitting talking to him, he looked at me crinkled his nose and said "you have snake breath" I don't know what snake breath smells like but I didn't think I had bad breath. He also tried to tell the doctor that his name was Jimmie and I was Lee and that I was the one that was sick not him. Today he was laying in bed as I was updating this blog and he said Jimmie help I looked over and he had his SCD cord stuck between his toes. It is always something.
While they were looking for the bleed they dislodged his feeding tube, they were able to replace the tube but once again had to suture it to the bowel. During his stay he took a shower and flooded the shower room which is across from his room, so he flooded his room also. He did well and toward the end of his stay began to have tremors we all thought it was from the morphine he had received for a couple of days. Lee cane home on Halloween day. Although we enjoyed the trick-or-treaters, they made Sadie have a bad day.
October 3rd was just a bad day in general Lee's tremors were severe and his confusion was out of control. He had not slept the entire night and was up and down about every 15 minuets. This ran Linda ragged because I was at work and she was on night duty with Lee. I slept some of the day and then made the choice to bring Lee back to the ER at Utah Valley hospital. He was admitted for suspected infection and encephalopothy. While he was in the hospital he was not improving at all, he was admitted on Saturday November the 3rd and on Monday the 5th we convinced them to transfer him to Murray to be admitted to the liver team. They did another Paracentesis and ran a bunch of cultures of their own, the final verdict was sever dehydration and infection. After 12 hours of fluids Lee is more himself, still a little confused and some slight tremors but doing so much better. Today Linda and I were brave and rode the front-runner train it was actually really nice to be able to just sit and relax on our ride to the hospital.
The Plan from here is to send Lee home in the morning, his hydration level is improving and he is currently sleeping. I just have to tell you about a few things he did when he was so out of it, first the ugly, he was not very nice and it was usually directed to me. I love him and I know it was not him truly just the illness and encephalopothy. While in Provo he had a taped on Pulse ox monitor he kept asking the nurse for a pair of pliers to "get this damn thing off my finger" then he ripped it apart trying to get it off. Another time when he returned from a paracentesis he told the staff "they used a hammer and screwdriver to get the fluid out." Once we got him here to Murray his nurse said " I need to see your IV" Lee looked at her and said "ain't I Ivie enough" Linda and I were sitting on the couch laughing at him what a silly man. At one point I reached over and touched his arm Lee grabbed my hand and shoved it away and said "Sadie has a cold butt". Then a few minutes later I was sitting talking to him, he looked at me crinkled his nose and said "you have snake breath" I don't know what snake breath smells like but I didn't think I had bad breath. He also tried to tell the doctor that his name was Jimmie and I was Lee and that I was the one that was sick not him. Today he was laying in bed as I was updating this blog and he said Jimmie help I looked over and he had his SCD cord stuck between his toes. It is always something.
Rehab at Utah Valley Neuro-Rehab unit
September 25th was moving day. Lee was super excited to be closer to home and to start his road to recovery. The criteria for Neuro-rehab was 3 hours of rehab/therapies a day this was this was for PT/OT with an additional hour for speech therapy. For someone that spent 2 weeks in the ICU this was a big challenge. The first night at rehab Lee was able to video chat with his mom Donna was there and added a few filters it made Lee laugh, at this point he needed a good laugh.
Lee Did so good in therapy, he worked hard each day and got stronger and stronger, he had some ups and downs needing several more paracentesis while he was there. All in all Lee was a rock star. He did have his silly moments, One day he was convinced his feeding tube was his head band and kept putting it on his head.
Lee also had several adventures outside,just a little walk to look at the life-flight chopper, a couple of adventures to see his Sadie girl and several trips to sip-in for flavored ice cubes.
Lee received a new Picc line while in rehab they had such a hard time trying to get labs and IV in him. It drove him crazy flopping around so I found him some cool arm covers.
Bonnie, Ivy and Mattie came to see Lee one day, he enjoyed seeing they all and seeing Ivy's newest baby also.
Lee was discharged from Rehab on October 18th. He was doing super well with therapy and was tolerating the tube feeds. Linda Lee's sister made the trip from her home in Saint Johns Arizona to help me with Lee for a little while. I am forever thankful that she has been here with me to take over care when I have to work. Sadie has been Super happy to have Lee home too.
Lee Did so good in therapy, he worked hard each day and got stronger and stronger, he had some ups and downs needing several more paracentesis while he was there. All in all Lee was a rock star. He did have his silly moments, One day he was convinced his feeding tube was his head band and kept putting it on his head.
Lee also had several adventures outside,just a little walk to look at the life-flight chopper, a couple of adventures to see his Sadie girl and several trips to sip-in for flavored ice cubes.
Lee received a new Picc line while in rehab they had such a hard time trying to get labs and IV in him. It drove him crazy flopping around so I found him some cool arm covers.
Bonnie, Ivy and Mattie came to see Lee one day, he enjoyed seeing they all and seeing Ivy's newest baby also.
Many Many complications
I started writing this post in September and I never picked up the computer to finish it, better late then never.
Saturday September 8th. Lee had many visitors in his ICU room, Joetta came down on Friday night to stay the weekend and hardly left his side, Bonnie can Saturday to and sat with him through the night. Donna and Jessie brought Lee's mom down for a visit and Dee and Jeri came to See him too. Lee remained intubated because he could not protect his airway and breathe on his own.
Sunday September 9th. Joetta and Bonnie had to go home today. Jessie came and sat with me through the day, I was so glad to have someone to talk to and not be alone, we did have a great slice of pizza in the cafeteria it has some yummy vegies it was a Ratatouille pizza. The Gastroenterologest came in and attempted to place a small bowel feeding tube (SBFT) assisted by the EGD scope. this was not successful the tube did not want to stay in place. The debate on this day was attempt again placing the SBFT with the scope, going to interventionial radiology for tube placement or placing a PEG or PEJ tube. The PEG/PEJ was ruled out due to the high risk for infection with his liver failure and ascities. They made a plan to attempt placement with the scope on Monday.
Monday September 10th: The Gastroenterology came in and placed the SBFT via scope, this was not an easy task they had to place 5 clips and a suture to keep the tube in place and to keep it from migration out of the small bowel. After the SBFT was placed the nurse started to wean the sedation, there was not a change in mental status with the sedation removal, Lee just did not want to wake up when speaking with the doctors they feel it is due to his encepalopothy Lee went several days without any of his liver medications and this caused the encepalopothy to be worse he was in a coma state at this point. September 13th Kayleen and Wyatt cane down to see visit, Wyatt stayed the night with his Uncle Dude Dude. September 14th Joetta came back with Kayleen and sat for the day. This was a good day for Lee they finally did a paracentesis and drained 6800 ml from his abdomen. We all went over to have lunch at noodle and company. When we arrived back to Lee's bedside he was a little more responsive and would only really respond to his Baby Bo. We did giggle a little about to pretty bow that was on his head holding the breathing tube in place.
After this Lee got better and better. On September the 16th Lee was finally awake and trying to communicate, he was able to get his feeding tube out and he was so happy. What a day to remember and to celebrate. Things can only get better from here.
September 17th Lee got up in the chair for the first time in two weeks, he was very weak and needed a ton of help he was so happy to get out of that bed, I can only imagine after two weeks in bed. Don't that look like a happy face.
Funny thing in Lee's ICU room this was the view from the window, we joked about this "no wonder Lee's not waking up".
I was so worn out from all the previous days that I finally took a nap one day while Lee was taking a nap, I fell asleep holding his hand through the bed rail and an hour later I woke up still holding that hand.
September the 21st was moving day Lee graduated from ICU life to life in the outside, he was moved back to the transplant floor and to my horror they pushed him right into the same room that he coded in. I was not comforted by this at all, the only plus was it is across from the nursing station. On September the 23rd Lee and I took a walk outside and sat by the water feature it was a nice day and Lee was having a good day.
September 25th 3 week exactly Lee was able to leave the hospital and got to Utah Valley hospital for in-patient rehab. Lee and I are very thankful for all the care he received at IMC from the shock/trauma ICU and T-10 the transplant floor, you will never really know how much I appreciate you all.
Saturday September 8th. Lee had many visitors in his ICU room, Joetta came down on Friday night to stay the weekend and hardly left his side, Bonnie can Saturday to and sat with him through the night. Donna and Jessie brought Lee's mom down for a visit and Dee and Jeri came to See him too. Lee remained intubated because he could not protect his airway and breathe on his own.
Sunday September 9th. Joetta and Bonnie had to go home today. Jessie came and sat with me through the day, I was so glad to have someone to talk to and not be alone, we did have a great slice of pizza in the cafeteria it has some yummy vegies it was a Ratatouille pizza. The Gastroenterologest came in and attempted to place a small bowel feeding tube (SBFT) assisted by the EGD scope. this was not successful the tube did not want to stay in place. The debate on this day was attempt again placing the SBFT with the scope, going to interventionial radiology for tube placement or placing a PEG or PEJ tube. The PEG/PEJ was ruled out due to the high risk for infection with his liver failure and ascities. They made a plan to attempt placement with the scope on Monday.
Monday September 10th: The Gastroenterology came in and placed the SBFT via scope, this was not an easy task they had to place 5 clips and a suture to keep the tube in place and to keep it from migration out of the small bowel. After the SBFT was placed the nurse started to wean the sedation, there was not a change in mental status with the sedation removal, Lee just did not want to wake up when speaking with the doctors they feel it is due to his encepalopothy Lee went several days without any of his liver medications and this caused the encepalopothy to be worse he was in a coma state at this point. September 13th Kayleen and Wyatt cane down to see visit, Wyatt stayed the night with his Uncle Dude Dude. September 14th Joetta came back with Kayleen and sat for the day. This was a good day for Lee they finally did a paracentesis and drained 6800 ml from his abdomen. We all went over to have lunch at noodle and company. When we arrived back to Lee's bedside he was a little more responsive and would only really respond to his Baby Bo. We did giggle a little about to pretty bow that was on his head holding the breathing tube in place.
After this Lee got better and better. On September the 16th Lee was finally awake and trying to communicate, he was able to get his feeding tube out and he was so happy. What a day to remember and to celebrate. Things can only get better from here.
September 17th Lee got up in the chair for the first time in two weeks, he was very weak and needed a ton of help he was so happy to get out of that bed, I can only imagine after two weeks in bed. Don't that look like a happy face.
Funny thing in Lee's ICU room this was the view from the window, we joked about this "no wonder Lee's not waking up".
I was so worn out from all the previous days that I finally took a nap one day while Lee was taking a nap, I fell asleep holding his hand through the bed rail and an hour later I woke up still holding that hand.
September the 21st was moving day Lee graduated from ICU life to life in the outside, he was moved back to the transplant floor and to my horror they pushed him right into the same room that he coded in. I was not comforted by this at all, the only plus was it is across from the nursing station. On September the 23rd Lee and I took a walk outside and sat by the water feature it was a nice day and Lee was having a good day.
September 25th 3 week exactly Lee was able to leave the hospital and got to Utah Valley hospital for in-patient rehab. Lee and I are very thankful for all the care he received at IMC from the shock/trauma ICU and T-10 the transplant floor, you will never really know how much I appreciate you all.
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