December 3, 2024
On 11/25, we had a few appointments and were released to head home to TN. We are thrilled to be home for Thanksgiving and to spend much needed time with family, including our precious granddaughter. She is one of Mark's primary motivations and the light of his life. Being home has been a transition we need to get used to, and Mark continues to work hard to regain independence. We are so grateful for all the amazing support, all the prayers, the special visits. Miracle on Miracle.
We are also so very grateful for Transplant House of Cleveland, who not only provides affordable housing for families of transplant patients, but community and support for caregivers. We look forward to being a long standing part of the Transplant House and a support system for others along their journey.
November 18, 2024
11/7 - Mark was released from the hospital and to the Transplant House with me. It took a lot of work to get him up the eight steps, but we made it. We have a routine of meds four times a day, PT twice a week, OT once a week, in home nursing and a series of appointments.
November 2, 2024
11/2 - Mark is back at Cleveland Clinic main campus for some testing to determine why he is coughing up blood. It has been consistent for a few days now. We received such a warm welcome back to J8-2. The nursing staff here is absolutely wonderful. We love them! We hope this is a short stay, and we get discharged back to either the rehab or even to the Transplant House of Cleveland.
November 2, 2024
Wow time is flying by. Mark has made some excellent progress at the Cleveland Clinic Rehabilitation Hospital. He is getting stronger and stronger each day, walking with a walker, able to stand up without assistance. I wish I had pictures of the milestones, but I am generally either following with the wheelchair or beside him with the walker.
October 13, 2024
10/13/2024 - So much has happened since our last update. Mark's feeding tube was taken out, we moved rooms when he no longer needed the ventilator, they took his trach out and took his last two drain tubes out. On Friday, October 11th, we marked 95 days in the hospital and Mark was moved from there to the rehab hospital. He was evaluated by OT, PT and ST and begins a very rigoruous schedule of rehabilitation on Monday.
At the same time, our car (along with all the others in the Transplant House parking lot) were vandalized early Sunday morning 10/6. We are grateful nobody was hurt, but it certainly was not what anyone needed.
Please pray for strength as Mark begins the extremely tough journey of strengthening his body. He is still unable to eat much at all and needs the nourishment to be able to relearn to stand and walk (still something he is unable to do on his own at this time).
We anticipate being here for 2-3 weeks.
September 21, 2024
9/21 - It's been two weeks since our last update, and a lot has happened in that two weeks. Mark's birthday weekend we spent going back on the ventilator for about 36 hours as his body was not ready to wean. We were able to avoid a trip back to ICU and start the weaning process again. Fast forward two weeks, and we are in a much different place. After weaning slowly, Mark has been off the ventilator for over 48 hours now. He is also doing a "red cap" trial. This is a step up from the speaking valve they use (a one way valve) to completely cover the opening of the trach and see if Mark can breathe as you and i do. He is tolerating it extremely well so far. This is the precursor to getting the trach taken out.
On the food side, Mark's appetite is still quite small. They have stopped the feeding tube to see if he can get enough calories to be healthy - not yet. For those of you who know Mark, this is completely opposite his normal ability to take in a whole Lou Malnati's pizza or down a couple of Portillo's hot dogs and some cheese fries.
On the strength side, Mark is getting a little stronger each day. He is almost able to stand on his own. He is walking short distance (25 feet or so) with some support before he sits and rests. His muscle mass has dwindled significantly being bed ridden for nearly, so rebuilding will take quite some time.
The doctors are very pleased with where he is right now, given the "amount of machines" he was on to support life leading up to transplant.
We continue to be overwhelmed by the love and generosity we are receiving. This is a long road, and we could not do it without you.
September 7, 2024
9/7 - Today we celebrate Mark's birthday with a gift of life. We are so grateful for this miracle. Mark continues to progress. He has done three days in a row of only four hours on the ventilator. While he cannot stand or walk yet, he is getting a little stronger each day.
August 28, 2024
8/28 update
We continue to have ups and downs, and we are grateful that we have been able to avoid going back to ICU for any issues so far. Mark had a swallow test on 8/22 and was able to eat his first solid food in a month. He chose cottage cheese and fruit. His appetite is still quite low, but they are supplementing with tube feeding to ensure he has what he needs. He has had fever on and off and ongoing tests. His spirits are good, and we even hear the occasional joke. His funny for today was asking why the doctor is prescribing truth serum.....He is on metoprolol (which helps prevent a. fib) :-)
He is on the ventilator some during the day and at night to rest his lungs.
He is unable to stand or walk, but we are confident that will come in time. The PTs and OTs here are outstanding.
August 21, 2024
It has been a bit since our last update. We have hit a few key milestones along the way. After being reintubated, Mark had a tracheostomy, which was a huge help in supporting his lung recovery. He was not able to speak with that for about 10 days, which make anxiety skyrocket.
Mark had the speaking valve placed on August 19th, which was a huge help in reducing his anxiety about not being able to talk. They still remove it at night in order to place him back on the ventilator to rest.
Today, August 21st, we moved out of the ICU and into the step down unit. HOORAY! After 30 days in the ICU (21 were post transplant), he is back in a private room.
The staff here at Cleveland Clinic has been wonderful, and we will miss all the great nurses we got to know in the ICU.
On to the next phase of recovery - Mark will continue to wean from the ventilator, work on standing on his own and then walking. For today, we are so grateful for this milestone of progress.
August 10, 2024
August 10 - This week has been up and down for Mark. He was reintubated on August 7th as his body was just working too hard to breathe, and he needed support. The following day, they performed a tracheostomy. This allows for several different modes of breathing and will help Mark progress faster and be able to have physical therapy. On Friday, August 9th, Mark stood (assisted) for four seconds and was able to sit up on the edge of his bed unassisted for 30-60 seconds. We are so grateful for the tireless efforts of the nurses and doctors here at Cleveland Clinic.
August 6, 2024
We had some big milestones this week. On Sunday, August 4th, Mark came off ECMO. On Monday, his breathing tube came out. Each of these presented challenges as Mark's body had to adapt, but today he is sitting in the chair for the first time. We are so grateful for the attentiveness of the staff here in ICU. We will likely be here a little while longer, and we look forward to new milestones.
August 2, 2024
We are excited to share that Mark received his new set of lungs along with a double bypass on Wednesday, July 31st. After a few issues, Mark is now resting comfortably (August 2nd) and doing well. The next steps will be to remove ECMO and then to remove the breathing tube. That may happen over the next few days.
We are so grateful for the outpouring of love and support!!!!!
