The Stark Family

Day 24 - Monday 10/15/07

Hi! It’s Mitch, again. Thank you to those of you who have responded to our request for help in finding a PCP in Orange County for Tym. We have some leads, but are still trying to connect with the right people, so continue to pray and work toward that end as you are able.

This has been a week of small steps forward and some increasing challenges. Tym continues to show progress in many areas. His attention span is improving. He can sit quietly and listen for a few minutes at a time. There was a Sunday Church service at the Rehab Institute and he listened intently for the 3-4 minutes that the pastor spoke.  And, he sang along to all of the song without looking at the song sheet.

Also, his ability to speak in full sentences is getting better, but he is still doing something that they call perseverating.

(see http://en.wikipedia.org/wiki/Perseveration for more information).

Both his short-term and long-term memory is improving. He can pretty much always find his way back to his room and he accurately describes things from the past. We were talking about running and someone asked him if he ran track in high-school and he said, “No, I ran cross-country.” Then, he went on to explain that he is one of the top marathoners in the world and he usually runs a marathon in under 2 hours.  However, he went on to state emphatically that a marathon was 4, maybe 6 miles at most.

On the downside, he’s still inconsistent is remembering people’s names.  We did discover that he good at rhyming.  When he was struggling to remember my name, my wife said, “It rhymes with itch,” and he got it.  And when she said her name rhymes with candy, he got that too.

The biggest challenge is that he still deny’s the fact that he had an accident or that he needs to stay in the rehab center to get better. And, he is adamant about going “back to his house up north” every evening - stating that he has to “go back to work tomorrow.” His nurse used the term “covering” to describe this. Basically, since his mind can’t comprehend his situation, he’s making up stories to try and explain things away.

While too many visitor would probably be confusing, he did have a couple of the guys visit him from his men’s bible study group at Trinity in Lompoc.  It was obvious from his expression that he recognized them, but again, he couldn’t remember their names.  That seem to leave an impression on him.  He has continued to mention it, although he says it was this morning (another area in which is congnitive abilities are still not up-to-speed).

Hello. This is Mitch, Tym’s brother. Jeremy is on his way to San Francisco for the wedding of his best friend from high school (he’s the best man), so I’m filling in as the Blogger.

As Jeremy has stated earlier, in our effort to get Tym transferred to Orange County, we’ve been running into many roadblocks. Yesterday, we were able to talk directly to his case worker for Blue Cross and, while there are multiple competing issues that are in play (too much to describe here), she told us the following very encouraging information:

We have the right to request that Tym’s insurance be transferred to another Medical Group. However, that is contingent upon finding a Medical Group down here in Orange County that -
1) accepts Blue Cross HMO (CaliforniaCare), and
2) will accept Tym as a new patient.

My expectation is that, while it may not make sense to everyone reading this, it will make sense to the person who can help.

If you can help you can either contact a family member that you know or just post a comment here and we’ll contact you (you don’t need to leave a phone number, we’ll e-mail you securely).

Thank you all for your continued prayers and support.

Day 17 - Monday 10/08/07

Tym is continuing to do well in the rehab center. He is doing well with all of his therapists. He also improves in his comprehension and expression skills. Tym continues to be focused on leaving and even packed up all of his pictures and cards on Sunday because he was ready to go home.

We are trying to get the transfer facilitated so that Tym can be closer to his friends and family in Orange County. This is a difficult process, and we are often met with many road-blocks. The family plans to move Tym to Orange County for his long-term care program, and the prominent location is in Orange CA. The other long-term care option would have Tym under 24 hour care in one of his family-member’s homes which is much more difficult to facilitate. If we transfer Tym during his acute (short-term) care, we plan for him to be in Fullerton CA by the weekend.

Tym had a good time on Monday. After his therapy he read the newspaper with his mother Barbara. He read the same stories a few times as his memory and attention spans are so short, that literally everything is new to him. Later he read his “Get Well” cards and looked at pictures of friends and family with his brother Mitch. He was also very interested in the Cycle World (street bike) magazine I had dropped off for him. The Cowboys vs. Bills football game was on as well, but Tym ignored it while Mitch and Tym’s sitter (name withheld) were quite interested, as it was a dynamic game near the end.

Stephanie and I (Jeremy) showed up later in the evening to drop off some fresh clothes and the cards from Tym’s coworkers (Thank you!). Steph and I were reading the Cycle World magazine with Tym. He was making very keen observations about the different bikes depicted in the magazine. He recognized parts and designs of motorcycles, and made logical observations about them. This shows that Tym’s cognitive skills are improving. It was getting quite late, and we said “Goodnight!” to our dad and brother without issue. We hope that he grasps the reality of his situation very soon. He still deny’s the fact that he had an accident or that he needs to stay in the rehab center to get better.

Day 15 - Saturday 10/06/07

Tym is doing much better in the rehab center than he was in the hospital. He has not been aggressive or violent for the past two days. He continues to eat well. He eats completely on his own as well. He is impressing all of his therapists with his continual improvement. Tym is now suffering a bit of aphasia, in where he has an inability to name objects and persistent repetition of phrases. The speech therapist is working on these things with Tym and his family. It is now important to continue talking about the subject topic and ignore Tym’s catch phrases and inappropriate interjections.

Most of the family was able to visit Tym today, and we had the opportunity to bring him lunch instead of having more hospital food. Tym’s brother and wife, Mitch and Sandy, were kind enough to run to El Pollo Loco and pickup some food and drinks for the family to share with Tym. Thanks guys! Tym enjoyed a Pollo Bowl and half a chicken burrito. He was quite talkative, and we would have to remind him to finish his lunch. He also wanted to offer everyone else to share his food. I tried to give him some salsa to put in his bowl, but he ate it off of the fork instead. He said it was good, but I helped him dump some in his bowl rather than just continuing to chuckle.

Tym finished a nice lunch with his family, and even sat quiet and listened to other’s stories. He laughed and responded appropriately, so his comprehension is getting much better. Tym would often interject, but typically with nonsensical dialog. We think this is due to the aphasia. Later Tym enjoyed my Dirt Rider (dirt bike) magazine, and would point out the good pictures, and he could often read the names of the bikes and the engine sizes. He was doing very well, and flipped through the magazine at least three times. He kept on talking about his “race bike”, which I know he doesn’t really have, but I too was getting excited about it nonetheless.

The plan is still to get Tym to a local rehabilitation center. We will not be able to make any progress on this until Monday. Tym’s therapy consumes most of his day during the week and half of Saturday, thus visitors are encouraged to visit on Sundays. I don’t know that Tym will still be there next Sunday, when he might be ready to visit, so please continue to check here for updates. We had a nice time with Tym on Saturday, and we are so happy to see him relaxed and happy again. It is a big relief for the family.

Day 13 - Thursday 10/04/07

Great news! We’ve passed our first major milestone and got Tym out of the hospital and into a rehabilitation center. In the rehab center he will get the special care he needs and will no longer have to be restrained with jackets and wrist straps. The restraints definitely hindered his ability to focus and this often prevented him from exercising his brain.

Tym’s morning started like previous mornings, he did very well with all of his therapists, but he started to get frustrated again. After he ate his breakfast, Tym fought and was restrained to the bed. He was determined on going out to dinner and he invited anyone who walked in the room to join us. We tried to figure out where he wanted to go, but he couldn’t think of any restaurants in the area. Tym did mention his new house and that he liked the Angels baseball team. We have been talking about this to him often. It’s still a good memory whether it is from prior to the accident or not. It shows that he’s making improvement, and accessing some memory short/long term. We let Tym eat his lunch on his own with the help of the therapists.

We are learning as a family to not over-stimulate him. Too many visitors, especially at once, will hinder his ability to focus on tasks and develop his cognitive skills. Tym is only allowed to see even his family members 2 at a time.

Most of the afternoon was consumed with the transportation of Tym to the rehab center and tying up loose ends at the hospital for the family. We got to put Tym in his new clothes before dinner, and he was much happier. He was singing and dancing around his new room. He did fall twice, but luckily onto the bed both times. Tym took some medication orally to calm down, but it wasn’t strong enough or didn’t act quickly enough. His frustration began to escalate, and he was trying to get going as he still wanted to go to dinner. He started grabbing and pulling equipment and utility carts and Mitch and I were not impressed by the staff’s ability to contain Tym. We did not want to leave until they proved to us they could handle him. We did not want to see him hurt himself or any of the staff. We know they are experts, and they probably deal with this all of the time, but it wasn’t apparent to us as being demonstrated.

Thank you for all of the support! Thank you to all of the experts who have always been professional and supportive. Thank you to the heroes that saved Tym’s life at the race! I cannot express our gratitude enough. We will be in contact with you. Thank you to all the readers, friends and family who have written such great messages, it has really kept the family (and the blog) going. Thank you for the cards, pictures, posters and flowers. You have all contributed, whether you realize it or not, in getting our father, brother, and son to be able to enjoy life again. It’s a long road ahead, but we know we can make it with your continued support.

I know it sounds as if I am saying goodbye, but I will continue to update the blog as appropriate, it just doesn’t need to be daily anymore. I will always post new pictures and successes when they happen. And I WILL definitely let you know when it is healthy for Tym to have visitors. I haven’t forgotten.

Day 12 - Wednesday 10/03/07

Tym did very well with his speech, occupational and physical therapy today. Tym was very polite in his speech therapy and was using “Thank you” in appropriate contexts. He also told stories about his brother Mitch. Tym did well eating all of his meals, often on his own this time. The occupational therapist got Tym to brush his own teeth today as well, a big improvement over yesterday. Tym does not need much Physical Therapy, and was too agitated and combative today to take any walks.

To pass the time, Tym watched an Angels baseball game with his family. He sang some more Neil Diamond and WOW songs with his brother Mitch. I think Mitch was showing off a bit because he was the only one singing in tune and carrying notes much longer than the rest of us.

We received a signed poster from his Royal Family Kids Camp (RFKC) friends and Tym read it and it made him smile. Thank you on behalf of the family. We know Tym holds a special place in his heart for this camp and the friends who help him enrich the children’s lives.

It is a struggle everyday for Tym to stay in the hospital bed. The family is doing everything we can to move him out of the hospital and into a neurological rehabilitation facility as soon as possible, maybe even tomorrow. We know Tym will be much happier there, because it will be more suited to his needs. We whole-heartedly thank the staff of caregivers at Santa Barbara Cottage Hospital for being so patient and caring. They are truly saints. We don’t know how they remain calm and professional under such difficult circumstances.

Day 11 - Tuesday 10/02/07

Tym got to go for his first walk this morning. We held his hands and walked around the hospital. He kept on remarking at what a nice place it was. He said, “Yeah, this is a really nice hospital!” We got to do a wheelchair ride later in the day and we got to go to an outside patio. Tym continued to be frustrated, even on his ride, and we had to get him back as he kept on taking off his heart monitor. We took one more walk, but every time we stopped for too long (like at a window), he would get frustrated and say “Alright, let’s go!” He never knows where he wants to go, but he definitely does not want to be here.

Tym unfortunately is not working well with the doctors. He continues to get frustrated and wants to go. He started to push and hit people that were in his way and you can tell he is determined to get out of here. Tym requires constant supervision, and it is getting very draining on the family. The hospital has contracted sitters to keep watch on Tym while we eat, sleep, and take care of insurance, care plans, and other matters. Tym has even had to resort to firing his brother Mitch, and some of the nurses and care givers. I don’t know if he just watched the Apprentice, but he’ll get upset and say, “Ok, that’s it! You’re fired! You can go somewhere else, because we don’t need you anymore!”

The only way to keep Tym calm is to distract him. Sometimes the CDs work, other times it’s the TV, newspaper, or food. Tym ate well today, he fed himself breakfast (eggs), lunch (chicken salad), but we never saw him eat any dinner (pasta and meatballs). I thought he might want to “carbo load”, but apparently I was wrong. Tym did sleep a couple of times, so he’s getting good rest and nutrition.

The doctors have advised that the best way to get Tym to calm down is to “locate” him. We have to tell him he’s in the hospital and he’s sick. He hardly ever realized that he’s in the hospital or that he had a “heart attack” (we know that’s not what technically happened, but it’s easier to understand, we think). We continue to receive your cards, pictures, and prayers. Thank you!

Tym sitting up in a special hospital chair. He only smiled for 1 second. We got lucky.

Day 10 - Monday 10/01/07

Tym finally got some well needed sleep. The nurses said he slept from 10pm to 4am. Also, Tym ate his own breakfast for the first time today. He was sitting up in a special chair and he fed himself some french toast and drank some Orange Juice. Tym kept grabbing for the coffee, so when it was cool enough I let him sip some. There was no sugar or cream in it, so he scrunched his face and said, “Yuck!”

Tym recognized all of the money that we showed him today. It is amazing that he can differentiate the money. We are getting a little progress on Tym’s recognition of other things as well. We are still trying to get him to recognize that he is in the Hospital. He won’t say it often, and has a hard time relating that response to the question, “Where are you?” I think his mind skips the answer because he will go straight to, “Well, I’m going to go home.” I asked him why he was going home, and he said “To get ready … for the race!”

Tym is going to be moved today from the Critical Care Unit (CCU) to a recovery room. I will update this post if he makes any more progress today.We have received your cards and flowers. We read them to Tym and post them in his room. Thank you!

UPDATE:

Tym ate most of his dinner today. He was being spoon fed some chicken and carrots. He did really well on this and may not need a feeding tube installed. Tym also did very well with his Physical Therapist (PT) and stood up and walked today. We walked to the bathroom, and around the room a little bit. The most amazing accomplishment today was when Tym wrote his name on a piece of paper. I tried to upload a picture of it, but my phone is not cooperating (sorry). He wrote “Stark”, and then I wrote a line “NAME ____________”, and on it he wrote “Tym Stark”, which kind of looked like “7y7 Stark”, but pretty amazing either way!

Tym started getting aggressive today, and was very motivated to leave. Unfortunately he has to be tied down for his own good. His body is progressing much faster than his mind, and he’s liable to hurt himself.

Day 9 - Sunday 09/30/07

Tym continues to make progress. He was singing to some Neil Diamond and WOW (Christian) CDs that his brother bought for him today. Tym doesn’t want to eat or drink much on his own, but did make a couple of swallows which is encouraging. He does not like the feeding tube as he rips it out every night.

Tym met with the Occupational Therapist (OT) today. One of the funny things that the OT asked Tym was to identify some money. Tym knew to call the dollar “a dollar”, and the five he called “five dollars”. I guess we know one thing that he’s interested in.

Tym is starting to vocalize his desires. We try to get him focused on saying people’s names and where he’s at, but all he can seem to talk about is that he wants to leave. He’ll say things like, “Ok, well, I’m going to go now.” or “Let’s go!” Once he argued with me that “we can get out of here, sure we can, it’s easy!” You can tell he want’s to get out of the Hospital, but he doesn’t understand why he’s here in the first place.

Day 8 - Saturday 09/29/07

Tym continues to make progress however it is slow going. He did not pass his swallowing test, and has to remain on the feeding tube. Tym met with the speech therapist today and started making short sentences. He said things like “come here”, “I like him”, “good to see you”, and “you should get …the pan”  

Tym tossed around his stuffed animal, a raccoon named Billy. One encouraging act was that Tym started singing along to songs that were playing on the radio. He knew the words to Neil Diamond and Air Supply.

Tym is very agreeable with everyone, so it is difficult to tell if you are getting a genuine response. He does say “no” and “I don’t know” from time to time, but often just says “okay” in agreement with whatever is said.