We have all settled into the rehab routine pretty well, I think. We have started to get to know the staff at TNR (Texas Neuro Rehab), including OT, PT, ST, doctors, nurses, techs, etc. Rob, along with the doctors and nurses, worked on getting that balance between too much and too little pain meds. I think we are in a pretty good spot there now. Mostly he only complains of pain that is positional related (need to roll over in bed, reposition pillows, etc.) and body movement pain (e.g. tight muscles, using muscles that have been unused in quite some time, etc.). These are certainly expected and controllable. Mostly without too much pain meds. This has been key to enabling Rob to do more in therapy. It is so heartwarming to see him push himself. And he’s improving in many areas. For those of you that haven’t visited in a while, I think you will be amazed at the changes. Rob‘s speaking is suitable enough that we never use the alphabet board. Ever! Hooray! The OT is working on his upper body strength. His left arm, which has basically had zero movement up till now, is seeing slight muscle contractions and movement. In PT he’s been working on seated balance. Using his core muscles as well as his arms to lean forward, backward, side to side. In the session I watched today, he was able to stay seated without having the PT support him and he could lean in all four directions himself. He was even able to lean onto his left arm. Getting some weight-bearing on that arm is really important. His left shoulder is subluxed and those muscles haven’t been moving at all. So hopefully this will help spark them into action at some point; cross your fingers! In ST he is working on swallowing. I hadn’t checked in with the ST in a while, and yesterday Rob sprung the news on us that he had swallowed five bites of vanilla pudding. Woo hoo! This is great news! When I talked to the ST, who was also very happy about this progress, he emphasized that Rob ate five bites of *VANILLA* pudding. Sounds like Rob was very clear in his flavor preference! For those of you that know Rob, you know he’s not a “chocolate“ guy!

This week Jeff, a friend of Rob‘s from Cornell, came to spend the week with us. Jeff was an amazing help to Rob as well as to Spencer and me. One hidden talent that I never would have guessed is Jeff took a massage course in college. He’s also a wrestling coach and helps his players out with sore muscles by massaging them. So he put this talent to use on Rob. Oh my, what a difference! Some of Rob‘s pain was definitely related to muscle tightness and Jeff was able to loosen things up quite a bit. I think this was a continuation of what Rob‘s Aunt Virginia started when she was here. I’m not really sure why the medical field doesn’t think that this kind of body work is worth doing formally. It’s made a huge difference for Rob‘s recovery! Jeff is also a great handyman and did a couple of major projects at the house. But Jeff, if you’re reading this, the grout is still missing. I did mention this as a possible outcome… You’re just going to have to come back!

In the last blog, I told you about Rob‘s confusion and delusions increasing when we transferred to TNR. After a few days, things got quite a bit better. We were thinking we were past that hurdle and the changes were related to the location change. But this last weekend , Friday night got pretty bad and Spencer ended up staying up all night with Rob. He had significant anxiety and delusions and even some hallucinations. This is probably one of the worst times I’ve seen it and everyone was very concerned. After talking with Dr. Padrick, we decided to transfer him to Dell ER. That way they could do a bunch of testing and check things out quickly. TNR rehab does not have facilities to do that kind of quick testing. Labs take days. And they don’t have MRI or CT machines. So Saturday afternoon and night we spent at Dell. Luckily the on-call attending and resident at Dell were some of our well-known doctors. So we got great care from a team that knows Rob well. They did a bunch of labs which all came back negative. Including ammonia level which had previously been high at TNR (odd and no one has an explanation). But the MRI they did had mixed results. Several areas were definitely improved. Which is good news. But down by that darn brain stem area that has reaked havoc so much, there was worsening in the right side. Definitely not good news. After reviewing everything, and some back-and-forth plan changes (why is it that different departments can never agree on the best course of action?), Rob went back to TNR without being admitted to Dell. The team felt like the delusions, etc. could still be caused by hospital delusion. But we can’t rule out medical side effects either. Given the mixed results of the MRI, the doctors are feeling like we need to make some med changes. We’re going to try option number one first. Which is to increase the dose of voriconazole. So that’s our plan for the future. We will be watching this carefully. Crossing our fingers that side effects don’t increase and doing a repeat MRI in a couple weeks to hopefully see no more worsening.

Definitely want to encourage visitors to come spend some time with Rob. 4 PM or after Monday through Friday. Or all day/evening Saturday and Sunday. Those weekend days are pretty lonely because there’s no therapy happening and so your presence would be especially appreciated! Check out the last blog for email addresses for Spencer and me. Take care all!