Journal

Journal entry by Stacy Kuhn

Hello family and friends -
Sorry for the delay in updating you all, we’ve been a bit on pins and needles this week. 
In typical Steve Susman fashion, he has yet again amazed us. He has responded well to the COVID treatment regiment and is now stable on regular nose cannula oxygen. He is truly a force of nature. 
He must stay at the hospital for two weeks before being tested again. Then he must have two negative COVID tests within 48 hours of each other. Once he is cleared, he will return to TIRR rehab and we will resume the process of rehabilitation. The path of which is uncertain and most likely will continue to have ups and downs. However, our family remains strong and united in this journey. 
We so appreciate all of your well wishes and prayers. Please keep them up and we hope to be bringing more positive reports in the future. 
With love,
Steve’s family
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Journal entry by Ellen Susman

As the marathon continues we have hit a new nadir. Steve has Covid. We will never know when he contracted it; whether it was at TIRR or at Memorial Hermann when he went for surgery. He was doing really well after the operation this past Thursday, and went back to TIRR, where Stacy visited him for 3 days. Sunday he was diagnosed with Covid and an underlying pneumonia. We are heartsick that our valiant warrior has yet another battle. Stacy and I are quarantining together and we are going for tests Saturday.
In case any of you are worried about us, apparently because of PPE and limited exposure to Steve, our chances are very slim of having Covid. Still, we must be vigilant. Please continue surrounding him with light and love, as we do.

Journal entry by Ellen Susman

Steve has his shunt put in today. Stacy and I were able to visit when he came out of post op to his room. He was much more awake and responsive. This is just a short post to say Whew- we think this could be the turning point so are cautiously optimistic!
We will post more after we see the results in a few days after anesthesia wears off and shunt stabilizes. Thanks for the prayers and love. 

Journal entry by Harry Susman

Sorry for the lack of information lately.  We were not sure what to say because we really like reporting good news.  Unfortunately, after a period of seeming daily improvement, over the past ten days, his progress stopped and his condition regressed.  This was especially troubling because it coincided with when we could visit him in person, so we have had to watch this happen.  There is some good news however.  The doctors suspect the cause is excess fluid on the brain, which interferes with the communication among brain cells.  On Thursday, they are going to install a device to drain the excess fluid.  While we have been warned to temper our expectations, we have heard enough stories of dramatic changes after this procedure that we remain hopeful that our next post will return to reporting progress.

Journal entry by Ellen Susman

Well, I didn't get to visit Steve until Friday afternoon, and then again yesterday and today. Each visit was different, with Saturday being the high point. Steve is still on various meds and the Doctor is trying to adjust the dosage to get the most stimulation of his brain while still allowing him to get a good night's sleep. So, Friday he was very sleepy, but had already completed 4 therapies. They do wear him out. Saturday was great. I got there, shaved him, cut and filed his nails ( nurses aren't allowed to do so) put some cologne on his face and took his mitt off so I could hold his hand. We listened to classical music, interspersed with looking at photos of family and friends to jog his memory. It seemed to work. He called me by name, and was awake and present about 75% of the time. It's a hard thing to see: I can tell he wants to tell us things, but can't find the words. But I can almost see his brain working behind his eyes--and know we are just at the beginning of this marathon. Keep the faith. 

Journal entry by Ellen Susman

Well, a bummer day as I thought TIRR would let me visit Steve . It turns out there are a few issues to be resolved and I am hopeful maybe Tuesday or Wednesday things will open up. Keep your fingers crossed. I will know so much more once I can really lay eyes on him.

Journal entry by Ellen Susman

Greetings to all on a Thursday. Today we watched Steve do music therapy again. Besides the fact that we still cannot get over how much the therapist sounds like Franci, she is a real miracle worker. We heard her play I Walk the Line on her guitar and Steve said every last word of the song. Music definitely opens up pathways for him. Then she brought out her keyboard and had him play. That's when I was truly amazed. He can only use his right hand, but he played for a about 7 minutes while she guided  him up and down the scales, trying to have him move toward his left hand. Steve is responding to most questions monosyllabically, although he did surprise the Dr by asking him what the plan was for the day. We know TIRR works miracles, and I bet by June 28th we will look back and say wow!
Thanks again for all the support. It does not go un-noticed. Sometimes there's not much to say as progress is in increments. But we will try and give updates just so you know we are all hanging in.

Journal entry by Ellen Susman

Well, Harry says it is my turn to post, so here goes. We have had a terrific two days watching Steve interact with his music therapist. To me she sounds just like Franci Neely, who was one of the first SG associates and is a dear friend. Many of you don’t know that Steve plays piano by ear, can hum any song he hears and has phenomenal recall for Broadway tunes and opera . He never remembers the words, but can play and hum with the best. In fact I fondly recall Steve and Lee entertaining at the firm holiday parties when the firm was a lot smaller. Between them, they had it covered. Anyway, Steve astounded us today and actually read words from some flash cards. He read chair and pain, which means synapses are snapping. Yesterday he could identify an object as yellow, and when he played the tambourine, he ended by putting it on his head like a crown— a typical Steve move which embodies both his sense of humor and the fact that he is always in touch with his inner child. Although he thinks he is 53 and that his brother Tommy is older than he, we are making great strides. As we actually see his progress, it encourages me, Stacy Harry, Whitney, Amanda and all the family.
Keep up the good thoughts and prayers. They are working!

Journal entry by Stacy Kuhn

Hi friends & family -
   I returned to our family’s beautiful home in Napa this past weekend after an emotional week with family in Houston. Though we felt tremendous sadness over Dad’s accident, we all banded together to have joy in this stressful time for all. We found our strength in each other: siblings, cousins, aunts, uncles and, of course, Mimi. Her positivity has definitely made her our fearless leader. 
   And today we saw her positive attitude pay off!!! We had some beautiful Zoom calls with Dad. One was with the music therapist and the second with the physical. Highlights include jamming out to “Under the Boardwalk.”  The therapist asked him what the song was, and he said very clearly “Under the Boardwalk” ... thank goodness because he has made us listen to it countless times over the years.  When he was asked the name of the law firm and given the hint "Susman," he responded, "Godfrey"--which was amazing because no one had mentioned that name at all, he just pulled it from his memory.  And, when another therapist asked him how old he was, he said "53."  Again, the fact that he knew a number was an appropriate response was amazing.  (We sure hope he doesn't somehow come back thinking he is in fact 53; we don't have the energy for that.).  We also saw examples of his strength on the right side as he used a cloth to wipe his face and push and pull. We are clearly moving in the right direction. It will be a long journey and we’ve been told there will be set backs but if I've learned anything over the course of this month our blended family is prepared to fight like no other trial team on earth. After all we’ve been trained by the master!!!
   Thank you all again for the love and support.

Journal entry by Ellen Susman

This morning I said goodbye to Stacy and Rachel, headed back to Napa, and Amanda , enroute to Denver. Still here are Harry, Karen and family, and Whitney and Matt and kids. It was so wonderful to be able to cry and laugh and be together, finally--although this was not the scenario we imagined. We are so grateful to all you friends- who send notes, drop off food, little gifts and let us know in so many myriad ways that you are here for us. It does not go unnoticed although our various bandwidths differ day to day. Steve at TIRR is a very positive step. It means he is ready for the 3 plus hours of rehab a day. It's intense and exhausting for him, but we know he will meet the challenge. I am sure that when the hospitals let us visit, he will be ready and as excited to see us as we will be to see him.
Grateful to ALL of you who care about Steve, and to the amazing healthcare professionals who are doing the heavy lifting. 

Journal entry by Ellen Susman

As you know, Steve suffered a traumatic brain injury on April 22nd. He has a long way to go but is beginning to open his eyes and follow some commands. This is tremendous progress in a week. Steve is a warrior and we look forward to him overcoming the battles ahead in true Susman fashion.

Steve’s Story

Site created on April 30, 2020

Our family has decided to use CaringBridge as a way to communicate and keep family and friends updated about Steve's progress. We so appreciate your support and words of hope and encouragement. Keep them coming!  - Ellen, Stacy, Harry, Whitney, and Amanda

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