December 11, 2009

I returned home from Virgina a few days ago, it was a bitter sweet visit. I arrived on Sunday (11-29-09) prepared for Jared's surgery the following Monday. Someone miscommunicated and the surgery was delayed...for the 4th time. They pushed it back to the following Monday. I was disappointed but happy that I would be able to spend some time with Jared before he had the surgery.

I spent the first part of the week talking with doctors and therapists. Dr. B (a new fellow at the unit) explained to me that a few weeks ago they cut the dose of Amantadine (nuro stimulant) in half. Also during that time his prescription for Riddilin had expired, because the fellows were switched around during that time they didn't get the notification immediately. They thought because of these changes Jared was starting to regress. The doctors arranged all the medication back to the original dosage and hoped he would soon be back functioning as he was.

During the beginning of my visit Jared wasn't too active. He didn't participate in his therapies, he wasn't responding to questions, and he had stopped trying to speak.

This is Jared sleeping at the nurses station.

About mid-week Jared seemed to come around. He was more aware and he was able to answer questions. He tried to speak several times, I didn't understand him.

Mrs. M (speech therapist) wanted to do some trials of a more normal diet. She wanted to try some soft foods that weren't pureed. On the day of the trial Jared received a sandwich. This is not what Mrs. M had in mind for Jared. I had already started feeding Jared pieces of the sandwich. I was pinching off small bites and feeding it to him. Mrs. M walked in and was horrified of the meal Jared was served. Still willing to give him a chance she allowed me to cut the sandwich into quarters and give it to him. Surprisingly Jared was able to eat the sandwich. We had a problem when Jared decided to shove the last bite into his mouth. It was way too big and he was unable to chew it. Mrs. M and I talked, she still did not want to approve him for the next diet. Her fear was that Jared would receive another meal like the sandwich and would wind up choking. She told me she would try to make an approved list for Jared and hoped to give him more variety in his diet.
Jared eating his sandwich.

Signing "I love you"'s backwards but a great try.

Friday Jared and I were able to go on our first outing. We went to the movies with the recreational therapist. I was so excited that day when I woke up, I haven't been able to take Jared outside of the hospital since he was injured. I was disappointed to find Jared's nurse had dressed him in sweat pants. Sweat pants are fine for rolling around the hospital going to therapies, but not out to the movies! I really want to make Jared's life as normal as possible. I've prepared myself for some strange looks when I take him out, the least I can do is make sure he is dressed well. After Jared's morning therapies I wheeled him back into his room to change his pants. I sat there for a minute thinking about how I was going to do this. Calling the nurses to put Jared into the bed just to change his pants was going to take more time than I was willing to wait. The hospital hadn't approved me to make transfers by myself yet. I finally decided to change Jared's pants with him sitting in the chair.

Getting the sweat pants off was easy, I had done that many times with him sitting in the shower chair. I wiggled Jared's jeans up as far as I could get them and then asked Jared to lift his butt out of the chair by pushing his right foot down on the seat. It actually worked! Jared pulled his jeans up on the right side while I pulled on the left. His jeans are still too big for him but it doesn't really matter because he can't stand. I finished the outfit with his new jacket and matching hat. Jared wasn't able to eat lunch before the movie because it takes him the better part of an hour to eat and the movie started at 12. I packed some thickened drinks in my purse and rolled down stairs to wait for the van.

Jared attempting to smile for the camera while we waited for the van.
The ride to the theater was good, Jared seemed interested in our surroundings. We were going to see Old Dogs, I always choose comedies because I'm not sure about Jared's thought process. I decided to grab us some food on our way in, Jared doesn't have enough weight to miss a meal and I couldn't resist. I felt so sorry for him knowing he couldn't have popcorn, it smelled so wonderful! While I was getting the food the recreational therapist pushed Jared into the theater and settled in. The movie was starting as I settled in, noticing my seat was to Jared's left. I didn't allow Jared to feed himself, I don't trust him because he takes huge bites sometimes. It was dark, I was nervous not being able to see Jared's expressions, his right arm was on the opposite side of me making it impossible for him to reach over to me. Jared's right hand is the only one that functions at the moment and he uses it to communicate 80% of the time. I absolutely hate Jared's wheelchair! It seems to always be a barrier between us, I can never seem to get close enough to him while he's in it. I really wanted to be able to snuggle up against him during the movie, I kept telling myself one day we will be home and I'll to what ever I want with him!

As soon as we were back in the van Jared closed his eyes and napped on the way back. I'm sure it was exhausting for him.

Saturday morning I was scheduled for family training. One of the therapist had to watch me lift Jared before we could leave on his four hour pass. Jared is much harder to lift now that his muscles are so contracted. I was nervous about lifting Jared with a trained professional watching, it's nerve racking to have anyone watch me lift him. I got tickled because Jared wound up wrapping both legs around my waist the therapist was trying to show me something and asked me to move. I couldn't! Jared had me and he wasn't letting go! I tried wiggling loose which only made the therapist laugh harder, he told Jared to control himself at least until we got our pass. The poor guy had to pry Jared's legs apart to get me out. I was finally approved lift Jared by myself although I don't think the therapist had much confidence in me.

It was pouring down rain and freezing cold so we had to improvise. Jared arrived at the Fisher house warm and dry with the exception his right hand.

I planned to order Jared pizza but we had some issue with Pizza Hut's delivery service. We waited 2 hours to find out our order had been canceled! Another patients mom was kind enough to pick up McDonald's for us. By the time Jared was finished eating it was time to take him back.

Sunday was sunny and warm and Jared had another pass. This time I planned to take Jared out after lunch and bring him back in time for dinner. Jared seemed to be tired so I wheeled him up to my room and put him in bed. This was the first time I have been able to have Jared completely to myself. It was nice to see Jared laying in a real bed, after six months of snuggling origami I was finally able to lay comfortably next to Jared. I stripped down so I could feel Jared next to me skin to skin, Jared thought this was an excellent idea and couldn't get his clothes off fast enough! We settled into bed and soon Jared was snoring. It was so wonderful to lay there next to him, I can't wait for him to come home so we can lay like that every night.

After a few hours Jared woke up, laid there talking to him. He answered my questions with head nods and refusing to open his eyes. Those few hours we were "normal", just another couple laying in bed having a conversation.

Eventually I had to get up and get dressed. When I got out of the bed Jared tried to get out of bed too. For a moment I thought he might actually fall out of the bed trying. It hurt so much to remind him that he couldn't stand yet.

Monday Dr. R called me as I was walking over. They had a surgery canceled and they wanted to operate on Jared early. After signing the consent forms I walked Jared down to the OR and kissed him goodbye.

When I spoke to Dr. R she said everything went ok. They didn't have any problems during the procedure but they were having a hard time waking Jared up. She thought he was conscious but was unable to get him to follow any commands or open his eyes. I went in to see him in recovery and he seemed to be resting. I looked at his stomach, I could see the outline of the pump but the wounds were covered. As I was digging around in Jared's blankets I saw him scratching his leg and realized he was awake and pretending not to be. I asked him to open his eyes and he shook his head no. I asked him if he was ok...nothing. We've been working on a little sign language with him so I asked him to shake his hand "yes" to let me know he was ok, he did. As the nurse walked up I asked him to shake his hand again if he was feeling any pain, again he shook his hand yes.

Jared right after surgery.For the rest of the day Jared laid in bed with his eyes closed. At one point he was grabbing for me and trying to hold onto me, I could tell he was in quite a bit of pain. I was so worried about him, a few times he had a death grip on my leg and was moaning. The nurses kept him medicated and when Dr. R came in to check on him he was able to answer her questions. He claimed his stomach hurt and his back didn't. I left for the night when he seemed to be resting well. I called later to check on him before I went to bed.

Tuesday morning Jared was still tired. He hadn't had anything to eat or drink since the surgery and I was determined to feed him. He was already in his chair so I rolled him to the dining room. Jared was asleep and refusing to wake up or respond. I told him he didn't have a choice he was he eating and I didn't care if he wanted to or not. I made him some oatmeal and placed a little of it on his tongue. Jared perked right up and ate the oatmeal and drank a carton of milk. Jared wanted more and ate another serving. I felt so relived after he ate! I let him sleep until lunch and made him eat again.

Going to therapy was useless Tuesday because Jared wouldn't wake up. I spent the afternoon worrying about leaving the next morning. I snuggled with Jared until four, I asked him if he was ready to eat and he said no. A half hour later Jared woke up ready to eat. He was so alert and ate all of his dinner. I talked to him for a while and we worked on a few signs. the last few days we have been working things like eat, drink, I love you, and T.V. Usually when I ask Jared to sign something he writes it out in the air with his finger. When I show him the signs as I'm asking he signs back. I don't know how much damage was done to his short term memory, I don't know if he's capable of remembering the correct signs.

I told Jared I had to leave the next morning. I asked him if he wanted to come home with me he nodded "no". He's always told me that he wants to come home so I didn't understand why he was saying no now. Then I asked him if he wanted to come home when he was better and he nodded "yes". I tucked him in for the night and kissed him goodbye wishing I really could take him with me in the morning.


  1. We are so proud of you, Jenn. You are the most remarkable young woman I know... Much love from your Aunts and cousin in NY.

  2. Hi Jen,
    You are an amazing wife and mother. A true inspiration. Don't forget to take care of yourself too. I'm thinking of you both and looking forward to updates. God is good and he is always working for you!
    Tanisa Samuel from BBC

  3. i found your link on bbc. i'm sitting here crying. you are a brave woman. i will be praying for you & your husband.

  4. i found your link on bbc. i'm sitting here crying. you are a brave woman. i will be praying for you & your husband.