Hi Everyone! I apologize for the delay in providing an update. These past few weeks have been quite the whirlwind. 

Wow - where do I begin...

I think it best to let you all know that Josh is doing well! Some accomplishments over the past 10 days or so: 

1) Josh has gained strength again in his upper body and able to do things like wave and suction his mouth by himself. This may seem small; however, not even 2 weeks ago he couldn’t lift a finger. He is sitting up at the edge of his bed, without support, up to about 2 hours every day. He is working on things like writing numbers to work on his hand muscle and working on exercises to build his strength. He has stood, supported, a few times; however, this is still very difficult. Therapy will continue every day, throughout the day. 

2) Josh has done well with the tracheostomy. One of his greatest accomplishments - he no longer needs the vent tube! Yay!! His breathing is all on his own - no support. One day the respiratory therapist listened to Josh’s lungs and asked him to take a deep breath. Josh took the deepest breath I have seen him take in years. I asked Josh how it felt and he said it “felt good.” - This was one of the greatest moments I have experienced in the past month. We are hoping the trache can come out this week yet.  Josh has a whisper of a voice and it will take time for his voice to come back. 

3) Josh has been removed from most of his IV medications. He does still get a medication on occasion via this method. They have tried hard to wean him off of a blood pressure supporting medication, but his blood pressure likes to dip low at times. He will need to get off this medication in order to leave the ICU. We are hoping this can happen this week. All other medications are done through his GT tube, which will later be taken orally when he can pass the swallow test. 

4) Josh is anxiously awaiting taking the swallow test. He will need to ‘pass’ this in order to eat and drink on his own. He wants nothing more than to drink a glass of water. We thought he was going to have this test yesterday, but the transplant team decided to postpone this in order to give Josh some more time to build his core strength, which will help with ensuring anything swallowed goes to the correct place versus inadvertently to his lungs. 

5) Josh was removed from continuous dialysis; however, he is on intermittent dialysis for his kidneys. He has dialysis about 4 hours every other day. They have had trouble with Josh’s dialysis line and this has required him to have his line ‘reworked’ 4 times already. Ouch! He is sedated every time and this does delay his ability to rehab. Let’s hope the line he had placed again yesterday works better. Josh kidneys took a severe hit in surgery. Everyone still expects them to bounce back, but they expect Josh to be on dialysis for quite some time yet. 

6) Some of the not so fun things over the past weeks - Josh experienced ICU delirium from not sleeping. This was really scary. Josh would look at you, for a moment, but then would look away. It was as if he had no idea who I was. It was a scary feeling to think that Josh was no longer mentally with us. He was drooling and seemed very anxious. Medication was given to force Josh to sleep (yes more sedation) and he snapped out of it. 
Josh has had other set backs too. Blood pressure issues, naseaua (which continues daily), antibody rejection (which is a constant but under control now), etc. We seem to be in a spot now, however, where the forward progress is happening in leaps and backwards movement is in tiny steps. We are seeing positive progress now. 

7) Mentally, Josh is okay. About 10 days ago, Josh asked me “how bad was it?” It was in that moment that I knew he was mentally recovered and he was back with me. He has zero recollection of anything, other than from about a week ago. He even asked me if he had left the hospital, had a complication and then had to go back. He was disheartened to know he has been in the hospital all this time and was heavily sedated for such a long period of time. Mental is toughest for Josh right now. He is easily discouraged and mentally exhausted. He told me every day is Groundhog’s day for him. (How sad, right?) I have been working hard to keep Josh positive with reinforcement of how far he has come, how well he is doing, and trying to make him laugh, essentially, all day long.
 
8) We are hopeful Josh will be able to move out of the ICU this week. (Please pray with us for this move). Josh will later than move to the rehab floor and start hard core rehabbing. 

All in all - Josh is doing great! Nurses and doctors comment to Josh (daily) about how good he looks and how far he has come. Yes, we know he took the tough road and this went WAY longer than expected, but he is with us and getting better every day. 

The kids and I are okay. I have been taking things one week at a time, the best I can. The kids have mainly been with my parents lately as Josh needs me even more now. Mental support is crucial right now. 

Many have continued to support us and check in with Josh. I am not sure how anyone could do this without great family, friends, neighbors, co-workers/Employer, etc. Josh and I are so blessed and thankful for everyone in our lives. 

I will do better, I promise, to provide updates going forward. :)