Harder Family

Harder Family

Thursday, April 13, 2023

Wild Roller Coaster Ride

 Deuteronomy 31:8 "The Lord Himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged."

The last six hours (well 30 hours) have been a wild ride. Yesterday, when the surgeon visited Wayne's room, we discussed Wayne's MRI (more on that below) and the plan for the next steps. The Shirley Ryan Ability Lab team was there evaluating Wayne. The consensus was that Wayne was doing wonderful, but needed rehabilitation. Since we were from KY, they decided they would go ahead and admit him for inpatient rehab today. Unfortunately, after I left Wayne's room this morning, PT came and decided that he was doing so well, he did not qualify at all to be admitted in their inpatient facilities. Wayne was told that he would just have to go to KY for rehab, which didn't make sense to me given he just had surgery 48 hours ago. 

They removed the head covering today (or the gnome hat as Sophia named it)

For four hours, I contacted people to receive clarification on what the new plan was for Wayne. I had serious questions like: what if he gets an infection and we are in KY, what do I do? Is it safe for him to travel six hours in a car at this point? I finally heard from the neurosurgery nurse practitioner. She was able to explain everything to me and presented me with some other options. After discussing it with her, we decided for her to complete paperwork sending Wayne to day rehab at one of Shirley Ryan Ability's other facilities, since the downtown location had a 3 week waiting list. So, the plan, at this time unless something changes again, is for Wayne to stay in Chicago for the next two weeks. He will attend day rehab during this time. The plan for me is to travel home on Tuesday to get a few things done around our house, take Shan for his prosthetic leg fitting, and then head back to Chicago on Thursday. 

Now for the MRI results. On Tuesday night after surgery, I heard from the surgeon around 8pm. He had another surgery to do after Wayne, so it was the first time he had a chance to update me on the surgery. He informed me that they had gotten the tumor all the way up to the motor cortex, which I now know was a little vague. On Wednesday afternoon when he stopped by after Wayne's MRI, he said that everything looked good except for the tumor they left behind in the motor cortex. Wayne asked him more about it and he said if they had removed that, Wayne would have been completely paralyzed. Wayne asked him how quickly the tumor will grow back, and he said that he couldn't be sure, but that Wayne's oncologist has some treatments that he will be presenting to Wayne. This was discouraging news to receive, since any tumor material left behind can grow rapidly. In the two+ weeks between Wayne's MRI and setting up his surgery, the tumor grew into his motor cortex. Please pray with us that the tumor does not astronomically grow during this time of waiting for the tissue results and treatment options. 

On a lighter side, Wayne is doing great. He definitely is hungry. He asked his nurse four times if she gave his menu options to the kitchen. She didn't want to mess anything up, so she posted it on his door. I took a picture because it made me laugh. 

Tomorrow he will be receiving contraband food from his old co-workers. He's already looking forward to it. Wayne's speech is struggling a bit. He has had some interesting way of saying things. Here are a few funny Wayne comments:

1) We were discussing Wayne's love of playing Dr. Mario and how I had purchased Tetris to play. In his attempt to describe his preference to Dr. Mario over Tetris he said, "I have gained the affection of Dr. Mario!"

2) He was watching some tv and a peloton commercial came on and he declared, "Any exercise is overrated if it doesn't have a basket to score." He was saying that basketball is the only exercise he enjoys.

3) Wayne likes to tease, but his face is very stoic since surgery and hard to read. I told him that I was having a hard time deciphering if he was serious or not. He told me, "I have a chuckle in my eye!" In other words, look at his eyes and I'll be able to see if he's laughing. 

We went out for deep dish pizza at Gino's East on Tuesday night, since you cannot come to Chicago and not have deep dish pizza.

My sister and I decided to take a walk last night to enjoy the beautiful weather in Chicago. We always love taking pictures at The Bean (The Cloud Gate), so that is where we went. We managed to find a boba tea place along our walk home!

The city was showing off last night. It was just gorgeous!

Overall, Wayne is doing well physically and mentally. I think he is struggling with the reality that since there was tumor left behind, he's running out of options for treatment. He tells me that he isn't concerned about himself, since he wins either way. He is mainly concerned for our children and how they will handle everything. Please just pray with us for treatment wisdom, for no more changes in plans since I don't know how much more flexible I can be moving forward, for our children as they process all of this hard stuff, that Shan Chen's diagnostic/sample prosthetic fits well, and for safety as I travel. I can't stress again how we value each and every one of you and all of your prayers!!

No comments:

Post a Comment