Ryan’s wheelchair was upgraded to a “four speed” today!! Occupational Therapy (OT) reprogrammed his chair so he could have more than one speed!!! He has four modes; Mode -1 is set at 20% (100% = 5 to 6 mph), Mode -2 is set at 40%, Mode -3 is set at 20% but with more torque so he can go on lawns and gravel, and Mode -4 is set for mom and dad!! OT put a control on the back of the chair so if Ryan is too tired or “blacks out” then Dean or I can drive the chair. Today they weighted Ryan today and in his chair he weights 640.6 pounds!! His Aunt Pam is here and she told him that now he fits in with family!! After they weighted him in the chair, they put him back in the bed and then weighted the chair. Ryan now weights 159 pounds – he has gained 3 pounds in the last week!! Most people don’t get excited when they gain weight, we celebrate!!!
Tomorrow Ryan gets to go on his outing. We are going to go to a park and have a sack lunch and then go to the theatre and see Cinderella Man. I think he is looking forward to getting out of the hospital again. Uncle Keith and Aunt Geralyn came in tonight so with the rest of us, there will be seven us going to the movie with Ryan!!
We finished our Tetra Topics Classes today and I asked what we would be doing at 2:00 pm next month?? I shouldn’t have asked!! We are going to have a month of classes on “Re-entry!” Some of the topics we will cover are Insurance, Social Security, sexuality, taking control of your independence, how to hire and fire caregivers, continuing with your education, etc., etc. Why did I ask??? After the class, I spoke with one of the Respiratory Therapist (RT) about “going home” and she said that one nurse and one RT will accompany us to help make sure that Ryan has the necessary equipment and his needs can be met. I asked how long they would stay and she said, “Oh, about 7 or 8 hours!” I took hold of her arm and said, “Roberta, we are not leaving!” She reconfirmed that things will get better!!
We did Range of Motion (ROM) in our Tetra Topics Class. They had each of the patients walk (no pun intended, ha,ha!!) their caregiver through ROM in their upper body and then their lower body, legs, hips, knees and ankles. When we were doing ROM with his elbow, Dean said, “Ryan my arm is getting sore!” Ryan looked at him and said, “Get over it DAD!” We all had a good laugh! When we left the class, Ryan asked Dean to push him because he was too tired. Dean was walking at a normal pace and Ryan asked him to slow down because the “breeze was too much for his face.” We determined that his skin must be very sensitive?? Actually, we don’t have a clue!! For a few hours tonight he was freezing, then two hours later, he was burning up. It is too bad that his brain waves can’t “talk” to the nerves in his body.
Three down, two to go. Ryan got his PICC (semi permanent IV) line out today!! He just has the trach and the halo to go!!! He told the pulmonary doctor that he wanted the trach to go next!! We hope and pray that it will be able to come out before we go home. We were sitting out on the bridge today and Ryan said, “Mom, I am beginning to feel like this is normal and I don’t want it to be normal”. I had to get my “big girl face” on and let him know that I hope it is not normal either. I told him that I was glad that he could go to the classes and learn all there is to learn about his condition, but hopefully we won’t have to use the knowledge!!
We are continually hopeful and prayerful that Ryan will be able to overcome this injury and be able to walk again. Thanks again for all of your love and support.
Dean, Terry and Ryan
PS. (This is written by Geralyn) Just to let you know that Dean and Terry seem to be handling things well. Dean has not lost his bizarre sense of humor. We asked him if they had received any financial counseling or advice on handling all of the expenses during any of the classes here at Craig. He said. . . “No, they just put the parents on suicide watch”! Terry said, “that is AFTER they point you to the homeless shelter”. We all had a good laugh. So thankful that none of them have forgotten how to laugh, despite the difficulty of all of this. We were talking to Ryan about the outing tomorrow and he mentioned they were going to the park, have lunch and then a movie. He said he was looking forward to going on the slide and merry-go-round! Another good laugh for everyone. What a great kid!
Thursday, June 30, 2005
Wednesday, June 29, 2005
It All Looks the Same to Me!
Ryan has been pretty “groggy” today, last night after his “hypertension incident” he got anxious and started hurting all over. We tried several things to help him; turning him, putting warm cloths on his head, putting cold cloths on his head, putting blankets on, pulling blankets off, etc. etc. We just couldn’t get him comfortable so he asked for some pain meds and some meds to help his anxious mood, then about an hour and fifteen minutes later, here came his sleeping meds!! It was too much medication and he slept pretty soundly most of the day today!
We went to Occupational Therapy today, they want Ryan to experience as many “real life situations” as possible while he is here; so Amy took us down the tunnel to the Swedish Hospital. The halls and doorways over there are narrower and smaller. Ryan did really well, although towards the end of the class he was having problems “puffing and sipping.” It has to do with the mix of the CO2 and O2 (Dean says it is like blowing too hard or too fast when trying to blow up a balloon. You have to let the inhale catch up with the exhale!). After we got out of the elevator, Amy said, “OK, Ryan we will see you tomorrow.” We pushed Ryan down the hall and into his room and low and behold, they had changed the chairs around and then we got to looking closer and all of his pictures and cards were not on his wall. Ryan said, “What has happened to all my stuff.” There were five of us, Grandpa, Grandma, Ryan, Pam and me; we turned and looked at each other and then looked at the pictures hanging on a sidewall and noticed it was a different patient. We then heard Amy coming down the hall and asking, “Where are they?” At that point we realized we had got off the elevator on the second floor instead of going up to the third floor!!! Amy was so embarrassed! We all started laughing and then looked at each other and were even more embarrassed that the “five” of us weren’t even paying attention!! We were glad that the patient in 206 wasn’t in her room!! We trucked on up to the third floor and it didn’t take long for the word to spread; so a lot of people on the third floor had a great laugh too!! Dean walked up the stairs so he wasn’t even aware of what had happened until he heard all the laughing! By the way, the two floors are identical when you get out of the elevator; the signs are in the same place, they have gurneys sitting along the wall, the drinking fountain is in the same place, etc. etc, and so it felt right until Amy tried to go back to her office and we tried to go to Ryan’s room!!
They have taken Ryan off fluid restriction; the sodium and potassium levels look good. He can now have any and all of the fluid he wants. He has a staff infection, so now we are watching that!
Dean has finally figured out the cycle that we go through here. He compares it to a roller coaster ride; with eyes closed. As you start up the climb (the good days), you hang on knowing that sooner or later you will get to the top and begin the scary ride down (the bad days). At some point, we hit bottom and begin the next climb not knowing how long or how fast the next cycle will be or last!!
Yesterday, one of the Respiratory Therapists came into the room and was admiring Ryan’s collection of reading material. He has a shelf with some books that she called “pretty intense” reading material (church and inspirational books). She realized that he was a Christen and was impressed with the books that he had collected. She then noticed his Jughead and Archie comic books. She wondered how had chosen his reading material!! Ryan loves Jughead and Archie, he has a “stash” of those comic books at home.
Today, the same therapist came back in was commenting on the “grocery store” that we have accumulated to assist Ryan in his effort to regain his appetite and some weight (OK, so we eat some of the stuff to keep it fresh)! She was laughing about the “nutritional stuff” we had; Snickers, Oreo’s, chips, jerky, chocolate peanuts, etc.,etc.,etc., and then a “fresh bag of tomatoes.” She was cracking up!! Dean told her that we have to have a balance with all of this. It was pretty funny!
We also went to a Transportation Clinic today. The tech measured Ryan in his wheelchair to determine how much room it would take to get him into a vehicle. She measured for headspace, as well as wheelchair clearance – he needs 60” inches for height, 28” for the width and about 58 “ for the length. Sixty-inches will allow him to sit straight up with 1/2” clearance!! The tech kept saying, “Boy, you are really tall”, “Gosh, I can’t believe how tall you are!” After she did all the measuring, we looked at a couple of vans that a local dealership, which specializes in retrofitted vans, brought by. One of them looked like a Fed-Ex van (only a little smaller) and the other one was a mini-van – which Ryan won’t fit in! Ryan was not very excited about any of it. We have learned to tell when he doesn’t want to face “reality” – he won’t look at anyone!! I asked if they had a nice “truck!!”
We also learned how to maneuver him up and down stairs, curbs, and ramps. We will have to have a manual wheelchair to take him into places that his motorized chair can’t go, like airplanes, grandma’s house (which isn’t wheelchair accessible!) and for that matter, any other place, public or private, that isn’t wheelchair assessable as well as when the motorized chair is not working!!!
Ryan was talking to Meredith on the phone tonight and he had to cough so he asked Meredith to hang on because he didn’t want her to have to hear the cough. When he got back on the line he said, “I had to step out for a minute, sorry!!” After days like today, he still has a sense of humor!! We are continually praying that we will be able to “endure to the end.” If you are a parent and reading this, you know how it feels to have a child hurt or in pain! I told Ryan that if I could I would trade him places. We continue to receive wonderful e-mails, cards, packages, etc. etc. full of love and encouraging words, which helps us get thru each day. Thanks!!
Dean, Terry and Ryan
We went to Occupational Therapy today, they want Ryan to experience as many “real life situations” as possible while he is here; so Amy took us down the tunnel to the Swedish Hospital. The halls and doorways over there are narrower and smaller. Ryan did really well, although towards the end of the class he was having problems “puffing and sipping.” It has to do with the mix of the CO2 and O2 (Dean says it is like blowing too hard or too fast when trying to blow up a balloon. You have to let the inhale catch up with the exhale!). After we got out of the elevator, Amy said, “OK, Ryan we will see you tomorrow.” We pushed Ryan down the hall and into his room and low and behold, they had changed the chairs around and then we got to looking closer and all of his pictures and cards were not on his wall. Ryan said, “What has happened to all my stuff.” There were five of us, Grandpa, Grandma, Ryan, Pam and me; we turned and looked at each other and then looked at the pictures hanging on a sidewall and noticed it was a different patient. We then heard Amy coming down the hall and asking, “Where are they?” At that point we realized we had got off the elevator on the second floor instead of going up to the third floor!!! Amy was so embarrassed! We all started laughing and then looked at each other and were even more embarrassed that the “five” of us weren’t even paying attention!! We were glad that the patient in 206 wasn’t in her room!! We trucked on up to the third floor and it didn’t take long for the word to spread; so a lot of people on the third floor had a great laugh too!! Dean walked up the stairs so he wasn’t even aware of what had happened until he heard all the laughing! By the way, the two floors are identical when you get out of the elevator; the signs are in the same place, they have gurneys sitting along the wall, the drinking fountain is in the same place, etc. etc, and so it felt right until Amy tried to go back to her office and we tried to go to Ryan’s room!!
They have taken Ryan off fluid restriction; the sodium and potassium levels look good. He can now have any and all of the fluid he wants. He has a staff infection, so now we are watching that!
Dean has finally figured out the cycle that we go through here. He compares it to a roller coaster ride; with eyes closed. As you start up the climb (the good days), you hang on knowing that sooner or later you will get to the top and begin the scary ride down (the bad days). At some point, we hit bottom and begin the next climb not knowing how long or how fast the next cycle will be or last!!
Yesterday, one of the Respiratory Therapists came into the room and was admiring Ryan’s collection of reading material. He has a shelf with some books that she called “pretty intense” reading material (church and inspirational books). She realized that he was a Christen and was impressed with the books that he had collected. She then noticed his Jughead and Archie comic books. She wondered how had chosen his reading material!! Ryan loves Jughead and Archie, he has a “stash” of those comic books at home.
Today, the same therapist came back in was commenting on the “grocery store” that we have accumulated to assist Ryan in his effort to regain his appetite and some weight (OK, so we eat some of the stuff to keep it fresh)! She was laughing about the “nutritional stuff” we had; Snickers, Oreo’s, chips, jerky, chocolate peanuts, etc.,etc.,etc., and then a “fresh bag of tomatoes.” She was cracking up!! Dean told her that we have to have a balance with all of this. It was pretty funny!
We also went to a Transportation Clinic today. The tech measured Ryan in his wheelchair to determine how much room it would take to get him into a vehicle. She measured for headspace, as well as wheelchair clearance – he needs 60” inches for height, 28” for the width and about 58 “ for the length. Sixty-inches will allow him to sit straight up with 1/2” clearance!! The tech kept saying, “Boy, you are really tall”, “Gosh, I can’t believe how tall you are!” After she did all the measuring, we looked at a couple of vans that a local dealership, which specializes in retrofitted vans, brought by. One of them looked like a Fed-Ex van (only a little smaller) and the other one was a mini-van – which Ryan won’t fit in! Ryan was not very excited about any of it. We have learned to tell when he doesn’t want to face “reality” – he won’t look at anyone!! I asked if they had a nice “truck!!”
We also learned how to maneuver him up and down stairs, curbs, and ramps. We will have to have a manual wheelchair to take him into places that his motorized chair can’t go, like airplanes, grandma’s house (which isn’t wheelchair accessible!) and for that matter, any other place, public or private, that isn’t wheelchair assessable as well as when the motorized chair is not working!!!
Ryan was talking to Meredith on the phone tonight and he had to cough so he asked Meredith to hang on because he didn’t want her to have to hear the cough. When he got back on the line he said, “I had to step out for a minute, sorry!!” After days like today, he still has a sense of humor!! We are continually praying that we will be able to “endure to the end.” If you are a parent and reading this, you know how it feels to have a child hurt or in pain! I told Ryan that if I could I would trade him places. We continue to receive wonderful e-mails, cards, packages, etc. etc. full of love and encouraging words, which helps us get thru each day. Thanks!!
Dean, Terry and Ryan
Some Interesting Pizza
Well, it is good to be back to my “home away from home”!! After taking Lisa to BYU-Idaho I realize that I’m not college age anymore!! Her car was packed to the brim and after about 13 trips up to the third floor, I was worn out!! We got her settled in after several trips to Target and Wal-Mart to get closet organizers, shoe organizers, etc. etc. I was able to stay in her apartment with her because all of her roommates were out of town for the break; that was nice except I had a hard time getting into to the twin bed that was sitting on cinder blocks!!! I am OLD!! It was hard to leave her there all by herself and it was really hard to see Ryan’s friends and Ryan not there with them!! We will continue to look forward and hopefully Ryan will be back at school soon!!
We went to a home modification class today. They had us bring in our floor plans to review and see what options we have. We just need to figure out a way to “get” Ryan in the house!! We also looked at the bathrooms to see what we can do there. A little overwhelming, especially considering the fact that we are not fully convinced that his condition will be permanent. Faith before the miracle!! --However, this reality stuff keeps getting in the way.
Ryan was sound asleep, snoring again, and the respiratory therapist came in to give him a treatment and I said to her that I wished I could sleep that soundly. She said, “You probably stay up all night worrying!!” She is right!! I told her that there are too many “doors” that we have to go thru and I didn’t want to see what was behind door #3!! It is a lot to take in some days!!
After our home modification class we had a Tetra Topics class; it was canceled due to lack of interest!!! Actually, Ryan was the only one out of his group that was able to get out of bed today. There are so many unknowns with Spinal Cord Injuries. Each day brings a new set of challenges for all of them. After his classes, we went outside, sat by the fountain again, and enjoyed being outdoors. It was a little windy and warm, but a nice day. Ryan, Grandpa and Dean were under a gazebo, in the shade and having a nice visit. While we were there, a pizza man came by bemoaning the fact that an order had cancelled for him and he just happened to have four pizzas that he needed to sell, cheap! Dean said it was creative marketing; nevertheless, we got a pretty good pizza. Everything was going well, UNTIL Ryan’s eyes rolled back into his head and blanked out on us. Dean called to him and got no response. He knew that he was in urgent need of help, so he began pushing Ryan’s chair “UP” (just a reminder, the wheelchair weights about 480lbs and ad another 156lbs for Ryan (he has lost more weight)) the ramp towards the sitting area just outside of the cafeteria where Terry, Grandma and Pam (Terry’s sister) were visiting. He yelled out to us to get the nurse. I asked what was wrong and Dean said, “I didn’t know, but we needed some help, NOW!!!”
I ran into the cafeteria (which is in the basement – no staff there) and had the cook call for nursing. As soon as Dean was able to get Ryan inside the door, he put him in a reclining position and Ryan told Dean to “lifted my legs” to get some blood back into his head. We heard over the intercom NURSING STAT DOWNSTAIRS CAFETERIA 3 WEST, NURSING STAT DOWNSTAIRS CAFETERIA 3 WEST!!!! They do ‘come a runnin’ when a stat call goes over the intercom. Grandma counted 14 people there at one point. Grandpa had to go over and sit in the corner; he was having a hard time handling “all the excitement!” After it was all said and done, Dean told Grandpa, “It will be easier the next time!” We are becoming to comfortable with this!! The problem... hypertension. The first blood pressure they took was 165/128: we got too much blood to the head! Typically, with those numbers we should have sat him up rather than reclining him; however, that was taken when he started getting color back in his face! We need to carry a blood pressure cuff with us so that we can take his blood pressure when he turns grey – and compare the numbers! A few minutes later, it was 115/76. As his Doc was talking with us, he explained some of the things that could cause this, one of which is eating!! He said that we don’t have enough blood in our systems to do everything so when we eat, all the blood goes to the stomach to try and process the food (what was in that Pizza!) – that is why people like to take a nap after lunch because there body is trying to adjust to the blood working in the tummy area!! Pam and I decided that we need to eat more lunches so we could take more naps!! Respiratory came in and said that it could also be his CO2 levels so they added six more inches to the ventilator tubing to create more dead air space. He is now up to a total of 62 inches; it is quite a “trunk!” After about 20 minutes, he was feeling pretty good, but as the night wore on he began anxious and began to ache all over. The nurse came in and gave him more drugs; he is sleeping like a baby now!! The doctor said that they will just keep making adjustments to his meds to try and figure out a good balance for his confused nervous system.
Bishop Walker and his counselor (from the family ward) came by this evening to meet Ryan and see how we were doing. It was really nice to visit with them; they left after having a prayer with us. We continue to be amazed at the people that are praying for Ryan. He is so blessed and so are we. We love you all!
Dean, Terry and Ryan
We went to a home modification class today. They had us bring in our floor plans to review and see what options we have. We just need to figure out a way to “get” Ryan in the house!! We also looked at the bathrooms to see what we can do there. A little overwhelming, especially considering the fact that we are not fully convinced that his condition will be permanent. Faith before the miracle!! --However, this reality stuff keeps getting in the way.
Ryan was sound asleep, snoring again, and the respiratory therapist came in to give him a treatment and I said to her that I wished I could sleep that soundly. She said, “You probably stay up all night worrying!!” She is right!! I told her that there are too many “doors” that we have to go thru and I didn’t want to see what was behind door #3!! It is a lot to take in some days!!
After our home modification class we had a Tetra Topics class; it was canceled due to lack of interest!!! Actually, Ryan was the only one out of his group that was able to get out of bed today. There are so many unknowns with Spinal Cord Injuries. Each day brings a new set of challenges for all of them. After his classes, we went outside, sat by the fountain again, and enjoyed being outdoors. It was a little windy and warm, but a nice day. Ryan, Grandpa and Dean were under a gazebo, in the shade and having a nice visit. While we were there, a pizza man came by bemoaning the fact that an order had cancelled for him and he just happened to have four pizzas that he needed to sell, cheap! Dean said it was creative marketing; nevertheless, we got a pretty good pizza. Everything was going well, UNTIL Ryan’s eyes rolled back into his head and blanked out on us. Dean called to him and got no response. He knew that he was in urgent need of help, so he began pushing Ryan’s chair “UP” (just a reminder, the wheelchair weights about 480lbs and ad another 156lbs for Ryan (he has lost more weight)) the ramp towards the sitting area just outside of the cafeteria where Terry, Grandma and Pam (Terry’s sister) were visiting. He yelled out to us to get the nurse. I asked what was wrong and Dean said, “I didn’t know, but we needed some help, NOW!!!”
I ran into the cafeteria (which is in the basement – no staff there) and had the cook call for nursing. As soon as Dean was able to get Ryan inside the door, he put him in a reclining position and Ryan told Dean to “lifted my legs” to get some blood back into his head. We heard over the intercom NURSING STAT DOWNSTAIRS CAFETERIA 3 WEST, NURSING STAT DOWNSTAIRS CAFETERIA 3 WEST!!!! They do ‘come a runnin’ when a stat call goes over the intercom. Grandma counted 14 people there at one point. Grandpa had to go over and sit in the corner; he was having a hard time handling “all the excitement!” After it was all said and done, Dean told Grandpa, “It will be easier the next time!” We are becoming to comfortable with this!! The problem... hypertension. The first blood pressure they took was 165/128: we got too much blood to the head! Typically, with those numbers we should have sat him up rather than reclining him; however, that was taken when he started getting color back in his face! We need to carry a blood pressure cuff with us so that we can take his blood pressure when he turns grey – and compare the numbers! A few minutes later, it was 115/76. As his Doc was talking with us, he explained some of the things that could cause this, one of which is eating!! He said that we don’t have enough blood in our systems to do everything so when we eat, all the blood goes to the stomach to try and process the food (what was in that Pizza!) – that is why people like to take a nap after lunch because there body is trying to adjust to the blood working in the tummy area!! Pam and I decided that we need to eat more lunches so we could take more naps!! Respiratory came in and said that it could also be his CO2 levels so they added six more inches to the ventilator tubing to create more dead air space. He is now up to a total of 62 inches; it is quite a “trunk!” After about 20 minutes, he was feeling pretty good, but as the night wore on he began anxious and began to ache all over. The nurse came in and gave him more drugs; he is sleeping like a baby now!! The doctor said that they will just keep making adjustments to his meds to try and figure out a good balance for his confused nervous system.
Bishop Walker and his counselor (from the family ward) came by this evening to meet Ryan and see how we were doing. It was really nice to visit with them; they left after having a prayer with us. We continue to be amazed at the people that are praying for Ryan. He is so blessed and so are we. We love you all!
Dean, Terry and Ryan
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