December 21, 2018 my husband was admitted to the hospital with viral pneumonia, before this he was a vital active 70 year old man. He enjoyed golf, painting and playing his guitar and he did all our household and lawn maintenance. We were very active in our teenage grandchildrens lives and this kept us very busy. He has had CKD for about 20 years and with the help of some great nephrologist at Vanderbilt he has been mostly stable.
Sorry I digress, two days after entering the hospital he was coughing so hard one of his lungs collapsed and he had to be intubated and was put into the ICU. He did not tolerate the breathing tube and kept struggling and trying to pull it out so the sedated him heavily with fentanyl, propanol and Ativan he was sedated for five days and couldn’t be weaned from the intubation, every time they tried his blood pressure would shoot up to over 230/110. I elected to have a tracheostomy done to get the breathing tube taken out. He was taken off the heavy sedation and we were transferred to a critical pulmonary recovery hospital to wean him from the respirator and remove the trach. Their main goal was to his respiratory health with minor attention to physical rehab. During the coming out of the sedation, which took about a week to fully get free of the effects, he had hallucinations and delusional episodes that were so frightening to me but he only vaguely remembers them now. When he woke up so to speak he could barely lift his left arm and couldn’t lift his right arm at all. He was so weak he was not able to turn over or lift his head. He was able to wean from the respirator and have his trach removed and occupational and physical therapy at an inpatient critical rehab hospital, has given him back the use of his arms, legs and hands. He remains so weak being up an active about two hours at a time exhausts him and he lost 23 lbs and most of that was lean body mass or muscle. His appetite is not good and we have to do 4 or 5 smaller meals with oral supplement shakes, to keep him from losing more weight. He is doing home health for physical and occupational therapy. He is grieving his loss of independence and how much he has to depend on me for the smallest of things he took for granted, he cries easily the only time I’ve ever seen him cry was at his Moms funeral. He is able to be up doing exercises or eating about 2 to 21/2 hours before he needs to lay down. We have been given no nutritional advice, no advice on how to combat the debilitating weakness and the brain fog he is experiencing. I’ve searched the web and cobbled together some things that could help and I know would do no harm. I found a Post ICU Recovery Clinic ran by Vanderbilt and we have an appointment with them. Does anyone have any resources you could share with us? Soryy this is so long