Griffin’sThank you all for your letters, love and support. Scott
4525 La Colina Court
Farmington, NM 87401
Ryan:
Dean:
Terry - Note that this has changed!! Mom's redmesa address will not be valid much longer.
Thursday, September 29, 2005
New Addresses
My mom asked me to post their new address information:
Wednesday, September 28, 2005
We Are Training
The caregivers are overwhelmed!! They can’t believe that there are so many “minute details” such as changing the trach neck tie each day, making sure that his feet don’t get caught between the lift and his chair, making sure the vent tubing doesn’t get caught in the sling when transferring him, make sure he is padded correctly, putting cream on his halo scars, putting cream on dry skin areas, checking for skin sores everyday, doing range of motion daily, mixing the solution correctly to clean his trach area, making sure his leg bag is secured correctly, making sure the suction equipment, lift, and wheelchair are all plugged in for charging, the list goes on and on!! I guess Dean and I learned a lot more than we realized while in Denver as we try to train the new help. Hopefully, in a couple of weeks they will be able to care for him without missing a beat! Ryan sure hopes so, he is tired of telling each person that cares for him how to change his trach neck tie!!
One of the caregivers is a male in his late 40’s I was taking a shower the other day and thought, there is another man in my house and I’m in the shower!! The things we do for our children!! I’m sure all will be fine, but it is a little unnerving at times to have him here without Dean.
I went down to the Medicaid Office yesterday to finalize paperwork, since we are now in New Mexico. Ryan got caught in the thick of the “red tape” because Craig submitted documents to the State of Colorado listing him as a Colorado resident. The paperwork was started incorrectly and has snowballed into a major headache for us; a person can’t be on “government dole” in two different States within the same month. I am trying to get these people to think outside the box!! I was working with Ryan’s case manger to figure out a way to get him covered since we had to fill his prescriptions on the 23rd of the month in New Mexico. She said that there was no way that it could be done, that was the law. I told her that there was always a variance written into the laws for extenuating circumstances. She then said, “I don’t think, I only do what the form tells me to do”!! There has got to be a bumper sticker in there somewhere! I took a deep breath and thought to myself, I think I am supposed to learn patience thru all of this. I didn’t get very far with her, but did get to her bosses boss and was able to “get out of the box” and get New Mexico Medicaid from September 20th, the date Ryan crossed State lines. Hopefully this will save us $520.00, the cost of the insurance co-pay.
Ryan is feeling better; we got him to go to a movie with us yesterday. It is good for him to get out a little bit, although there is not much in Farmington to do. Dean is working with Vocational Rehab to see if we can get him busy with a job of some sort. He is quiet depressed since he has been home; wondering what is in store for him in the near future as well as long term. We are tying to keep his spirits up but it is hard when all I do is cry!!
Aunt Geralyn got here last night; she brought some rain with her!! It rained most of the night. Today we had beautiful calm fall weather. We are glad she is here, she makes the best chocolate chip cookies; Ryan’s favorite!
With the change in vents and humidifiers, Ryan is struggling with breathing at night. We had the nurse who is helping with his respiratory needs here today for about three hours troubleshooting to see if she could figure out the problem. She thinks the humidifier is causing some different pressures which can make him feel like he is not getting enough air. They are going to run some blood gases in the next couple of days and see what is CO2, pH, etc. is and then go from there.
Uncle Marshall, Aunt Thelma and Cami and her new baby came up from Gallup to see us today. It was fun to see little Mason. It was nice to have them here; they took us out to lunch and Sam’s club. It is nice to have a change of scenery and it helps to have someone other than mom to talk to!!
We appreciate the continued support from family and friends. We have met so many new people while trying to deal with this; our new neighbor came over and introduced herself (I have wondered what our neighbors think with all the comings and goings at our house!) and let us know that she is a nurse at the hospital in the area and if we ever needed anything, we could give her a call day or night. It is comforting to know that there is someone right here that can help, if we need it.
We love you all.
Dean, Terry and Ryan
One of the caregivers is a male in his late 40’s I was taking a shower the other day and thought, there is another man in my house and I’m in the shower!! The things we do for our children!! I’m sure all will be fine, but it is a little unnerving at times to have him here without Dean.
I went down to the Medicaid Office yesterday to finalize paperwork, since we are now in New Mexico. Ryan got caught in the thick of the “red tape” because Craig submitted documents to the State of Colorado listing him as a Colorado resident. The paperwork was started incorrectly and has snowballed into a major headache for us; a person can’t be on “government dole” in two different States within the same month. I am trying to get these people to think outside the box!! I was working with Ryan’s case manger to figure out a way to get him covered since we had to fill his prescriptions on the 23rd of the month in New Mexico. She said that there was no way that it could be done, that was the law. I told her that there was always a variance written into the laws for extenuating circumstances. She then said, “I don’t think, I only do what the form tells me to do”!! There has got to be a bumper sticker in there somewhere! I took a deep breath and thought to myself, I think I am supposed to learn patience thru all of this. I didn’t get very far with her, but did get to her bosses boss and was able to “get out of the box” and get New Mexico Medicaid from September 20th, the date Ryan crossed State lines. Hopefully this will save us $520.00, the cost of the insurance co-pay.
Ryan is feeling better; we got him to go to a movie with us yesterday. It is good for him to get out a little bit, although there is not much in Farmington to do. Dean is working with Vocational Rehab to see if we can get him busy with a job of some sort. He is quiet depressed since he has been home; wondering what is in store for him in the near future as well as long term. We are tying to keep his spirits up but it is hard when all I do is cry!!
Aunt Geralyn got here last night; she brought some rain with her!! It rained most of the night. Today we had beautiful calm fall weather. We are glad she is here, she makes the best chocolate chip cookies; Ryan’s favorite!
With the change in vents and humidifiers, Ryan is struggling with breathing at night. We had the nurse who is helping with his respiratory needs here today for about three hours troubleshooting to see if she could figure out the problem. She thinks the humidifier is causing some different pressures which can make him feel like he is not getting enough air. They are going to run some blood gases in the next couple of days and see what is CO2, pH, etc. is and then go from there.
Uncle Marshall, Aunt Thelma and Cami and her new baby came up from Gallup to see us today. It was fun to see little Mason. It was nice to have them here; they took us out to lunch and Sam’s club. It is nice to have a change of scenery and it helps to have someone other than mom to talk to!!
We appreciate the continued support from family and friends. We have met so many new people while trying to deal with this; our new neighbor came over and introduced herself (I have wondered what our neighbors think with all the comings and goings at our house!) and let us know that she is a nurse at the hospital in the area and if we ever needed anything, we could give her a call day or night. It is comforting to know that there is someone right here that can help, if we need it.
We love you all.
Dean, Terry and Ryan
Sunday, September 25, 2005
Settling In
It feels good to be home. We have had a few ups and downs trying to get the hang of things on our own. We are teaching the Farmington caregivers the “tricks of SCI” or the “little things” that make such a difference; thanks to the help from those at Craig. We have to learn to keep track of time; Ryan has to have meds at certain hours, a lung treatment four times a day, intermittent suction, etc. etc. I just hope that we can keep him as healthy as possible. We have been impressed with the Doctor here in Farmington who is going to take Ryan as a patient. She actually made a home visit to meet us – have you heard of such a thing in a long time??? Dr. Thompson is the Director of the rehab facility which is associated with San Juan Regional Hospital. After “looking” Ryan over, she was right on target with the things we had learned at Craig as to how to care for Ryan, which was reassuring and comforting. Her office called Friday to see if everything was OK for the weekend and gave us numbers to call in the even we had a problem, which was also comforting.
Ryan’s body has somewhat adjusted to the move, no more fevers or other issues. He is feeling a bit troubled as to what the future will bring. He said that it was hard being at home; not being able to do the things that he used to do. Our Bishop here in Farmington sensed his anxiety and came by to visit with him; he felt a little better about things after the visit. We are so blessed that there are others who somewhat feel his pain and try to “lighten his load.”
Aunt Pam had to leave yesterday, she was such a great help; meals, laundry, and a shoulder to cry on!! We will miss her. Our friends in Farmington have been wonderful to offer assistance, meals, etc. A lot of the time, we don’t even know what we need – so it is hard to let them know. If we get a routine down, hopefully in the near future, we will be able determine what our needs are going to be. We have to figure out something, Dean and I won’t be able keep up the day and night routine for very long!!
We have had such a challenge in getting a bed to fit Ryan, but we were successful in finding and purchasing one which will be here October 5th. He isn’t able to lie flat on his back and stretch his legs out without hanging over the footboard!! We are grateful to Grandpa for the therapy table, where he can stretch out for a little bit everyday. Grandpa also “whipped out” a clothes line for us Saturday to air out pillows and quad pads. Thanks to Steve, Michelle’s husband, we don’t have oxygen tubing and alarm wiring hanging all over the room. I guess we could have used them for a cloths line!! Steve hid them in the air vents and the crawl space. He also was able to finish up the plumbing in the bathroom so we could give Ryan a shower earlier than planned.
Because Ryan isn’t able to move his neck very much yet, he can’t use the wheelchair tray, which Craig made for him, so Grandpa took it home to see if he can put an extension on it to raise it to a level where he can read a book or use it as a laptop table. While we don’t have the wheelchair tray, I asked Scott if there was anyway to view the computer screen on the TV so Ryan could use the internet, especially for his scripture reading. Voila, it didn’t take long and Scott had us viewing the computer screen on our TV screen!! We read scriptures last night from our TV – technology is wonderful. And, so is our family. We are so lucky to have such a great family who can do just about anything we need or ask.
When Darlene, the respiratory therapists from Craig, left, she commented on the number of friends and family that had been by in just the time she was here. She said, “You guys are going to be fine, I am amazed at the support system you have. In my 18 years with Craig, I haven’t seen this kind of support”. She had never seen a therapy bed in a home, either!! We are so lucky.
We don’t have TV connections yet and we won’t have until October 3rd, so we haven’t’ been able to see what is going on in the world on a day to day basis. We know that there are many people out there that have trials of there own. We are so grateful for the time that people have taken out of there daily lives to “come to our rescue.” We are hearing of people who don’t even know us giving of there time or materials to make Ryan’s life a little bit more comfortable. We love you all.
Dean, Terry and Ryan
Ryan’s body has somewhat adjusted to the move, no more fevers or other issues. He is feeling a bit troubled as to what the future will bring. He said that it was hard being at home; not being able to do the things that he used to do. Our Bishop here in Farmington sensed his anxiety and came by to visit with him; he felt a little better about things after the visit. We are so blessed that there are others who somewhat feel his pain and try to “lighten his load.”
Aunt Pam had to leave yesterday, she was such a great help; meals, laundry, and a shoulder to cry on!! We will miss her. Our friends in Farmington have been wonderful to offer assistance, meals, etc. A lot of the time, we don’t even know what we need – so it is hard to let them know. If we get a routine down, hopefully in the near future, we will be able determine what our needs are going to be. We have to figure out something, Dean and I won’t be able keep up the day and night routine for very long!!
We have had such a challenge in getting a bed to fit Ryan, but we were successful in finding and purchasing one which will be here October 5th. He isn’t able to lie flat on his back and stretch his legs out without hanging over the footboard!! We are grateful to Grandpa for the therapy table, where he can stretch out for a little bit everyday. Grandpa also “whipped out” a clothes line for us Saturday to air out pillows and quad pads. Thanks to Steve, Michelle’s husband, we don’t have oxygen tubing and alarm wiring hanging all over the room. I guess we could have used them for a cloths line!! Steve hid them in the air vents and the crawl space. He also was able to finish up the plumbing in the bathroom so we could give Ryan a shower earlier than planned.
Because Ryan isn’t able to move his neck very much yet, he can’t use the wheelchair tray, which Craig made for him, so Grandpa took it home to see if he can put an extension on it to raise it to a level where he can read a book or use it as a laptop table. While we don’t have the wheelchair tray, I asked Scott if there was anyway to view the computer screen on the TV so Ryan could use the internet, especially for his scripture reading. Voila, it didn’t take long and Scott had us viewing the computer screen on our TV screen!! We read scriptures last night from our TV – technology is wonderful. And, so is our family. We are so lucky to have such a great family who can do just about anything we need or ask.
When Darlene, the respiratory therapists from Craig, left, she commented on the number of friends and family that had been by in just the time she was here. She said, “You guys are going to be fine, I am amazed at the support system you have. In my 18 years with Craig, I haven’t seen this kind of support”. She had never seen a therapy bed in a home, either!! We are so lucky.
We don’t have TV connections yet and we won’t have until October 3rd, so we haven’t’ been able to see what is going on in the world on a day to day basis. We know that there are many people out there that have trials of there own. We are so grateful for the time that people have taken out of there daily lives to “come to our rescue.” We are hearing of people who don’t even know us giving of there time or materials to make Ryan’s life a little bit more comfortable. We love you all.
Dean, Terry and Ryan
Thursday, September 22, 2005
Home II
Well, we made it home!! It was quite a journey. The nurse and EMTs made it to the hospital about 9:30 and we were on our way at 10:15. I didn’t think that it was a rough flight, but Ryan had a rough time. He and Darlene, the respiratory therapist that came with us from Craig, were “green” most of the flight. We were told that we were going to fly in a Lear-Jet, but we were bumped to a Cessna!! We went “bed-to-bed” with the flight crew; they made sure Ryan was comfortable before they left at about 1:30 p.m.
The caregivers and respiratory staff from Farmington were here most of the afternoon, getting base-line information about Ryan so he didn’t get much rest. The bighearted tile layers who are retiling his bathroom were trying to get finished up and didn’t leave until about 10:30 that night and the air mattress that he was on had a leak in half of the cells – so he didn’t get much rest; he said he felt like he was sleeping in a banana peel all night.
Since the SCI Ryan’s system doesn’t like change. Yesterday he was experiencing headaches, temperatures of 101?, skin blotching, bowel problems, etc. It was a long day. He couldn’t get comfortable anywhere, bed, therapy table, or chair. He had a little better night last night, didn’t sleep real well, but wasn’t hurting as bad as had had on Tuesday.
We thought we had the fainting and blacking out under control, NOT!! Tonight he passed out twice. We are beside ourselves trying to figure out what to do!! We will dig a little deeper and try to get some answers.
Ryan’s Bishop in Denver and his family took us out to a nice dinner Monday night and our Bishop from Farmington was kind enough to come to Denver and drive our van home, with all of our belongings. It is so nice to have such dedicated, kind, gracious, helpful servants of the Lord to assist us; making our load a little bit lighter. We are grateful to be home, thanks to Aunt Pam for being here and our Ward members who are helping to keep us feed while we make this new adjustment.
We appreciate all those who have rallied round us during this most difficult time. We continue to pray for the Lord to walk with us, most times carrying us thru this challenge. May the Lord bless each of you, as you meet the challenges which you face in your daily lives.
Love, Dean, Terry and Ryan
The caregivers and respiratory staff from Farmington were here most of the afternoon, getting base-line information about Ryan so he didn’t get much rest. The bighearted tile layers who are retiling his bathroom were trying to get finished up and didn’t leave until about 10:30 that night and the air mattress that he was on had a leak in half of the cells – so he didn’t get much rest; he said he felt like he was sleeping in a banana peel all night.
Since the SCI Ryan’s system doesn’t like change. Yesterday he was experiencing headaches, temperatures of 101?, skin blotching, bowel problems, etc. It was a long day. He couldn’t get comfortable anywhere, bed, therapy table, or chair. He had a little better night last night, didn’t sleep real well, but wasn’t hurting as bad as had had on Tuesday.
We thought we had the fainting and blacking out under control, NOT!! Tonight he passed out twice. We are beside ourselves trying to figure out what to do!! We will dig a little deeper and try to get some answers.
Ryan’s Bishop in Denver and his family took us out to a nice dinner Monday night and our Bishop from Farmington was kind enough to come to Denver and drive our van home, with all of our belongings. It is so nice to have such dedicated, kind, gracious, helpful servants of the Lord to assist us; making our load a little bit lighter. We are grateful to be home, thanks to Aunt Pam for being here and our Ward members who are helping to keep us feed while we make this new adjustment.
We appreciate all those who have rallied round us during this most difficult time. We continue to pray for the Lord to walk with us, most times carrying us thru this challenge. May the Lord bless each of you, as you meet the challenges which you face in your daily lives.
Love, Dean, Terry and Ryan
Home
Well, Ryan made it home! He got to the house Tuesday at about 2:00! The flight went okay. Ryan came home looking very cheerful and happy. It was good to see him that way. Things went relatively smooth. At times, we actually think we have things under control and know what we are doing. My parents are very incredible. They were actually training everybody what to do. They sure know a lot about Ryan's care and know the right questions to ask. For the first few minutes it was very calm and cool. Then we had nurses, technicians, and construction workers come all at the same time. It turned very chaotic! He thought home would be different than the hospital, but I think it was louder! My parents are very busy people these days! We thought we had the house all ready for Ryan, but with his arrival came about 40 more boxes full of supplies, clothes, or snacks! We are trying to get organized as we speak...or as you read! Things will get settled in soon, but it sure makes your blood pressure go up...no pun intended.
The first night, Ryan had a leak in the air bed, so he literally slept in a hole. That caused a lot of problems! No one got any sleep. Ryan was in a lot of pain and discomfort for the entire night and on into the next day. We (my parents) did everything we could to make him comfortable, but he still had a tough time. I wish this would have gone a lot easier! But that is just not how it is going to work, we just have to jump right in. By the afternoon, after he had a chance to finally get out of bed and do some physical therapy, he was feeling a little better. You have probably read by now, that Ryan's face shows all of his emotions. One look at him and you can tell if he feels okay or not. So it was good to get a smile! We even took a walk around the neighborhood, being that was the first time Ryan had ever seen the place! He zoomed around, and made everyone chase him! It was good to just get out of the house. Wednesday night went a little better, but a bit of the pain lingered around.
Thank you to my Aunt Pam who is here from California to help out. She is wonderful and such a big help even if she thinks she isn't! My Aunt Geralyn is coming from Wyoming next week to do the same. I know my Mom appreciates her sisters being such a strength. It just makes a difference to have them here. (There is about a thousand others who deserve this mention also!)
Today was a good day. Ryan seemed to feel good all day. We had some good laughs and we still harass each other! What are brothers and sisters for? It was a good day. We are hoping tonight goes well also. My parents especially! It is just an experience to care for Ryan, organize all of the supplies, run to stores to get things that are needed, and find time to eat, sit down, or just stop moving for a minute. It is such a blessing to have so much help. The power of prayer is amazing. I literally feel like I have nothing left to give, and then from no where a strength seems to come and keep me going. I know that everyone feels this. There is a very good feeling in the household. A feeling of determination, strength, compassion, and love. Mixed with tiredness, nervousness, and laughter, we have us quite a emotional stew! We do not do this on our own. I know we have said it a million times, but THANK YOU to EVERYONE who has said a prayer, read the website, thought about us, packed, moved, yard saled, visited, brought goodies, or just given us a hug. I know I have left a lot out, but my brain is on empty! We sincerely can't say enough of the support and blessings we have received from our Heavenly Father, people who love and care for Ryan, and our family. Our extended family has been so wonderful in giving of themselves in every aspect. We love you and thank you ALL!
Michelle
P.S. We are still checking the email everyday. Thank you to those who are writing.
The first night, Ryan had a leak in the air bed, so he literally slept in a hole. That caused a lot of problems! No one got any sleep. Ryan was in a lot of pain and discomfort for the entire night and on into the next day. We (my parents) did everything we could to make him comfortable, but he still had a tough time. I wish this would have gone a lot easier! But that is just not how it is going to work, we just have to jump right in. By the afternoon, after he had a chance to finally get out of bed and do some physical therapy, he was feeling a little better. You have probably read by now, that Ryan's face shows all of his emotions. One look at him and you can tell if he feels okay or not. So it was good to get a smile! We even took a walk around the neighborhood, being that was the first time Ryan had ever seen the place! He zoomed around, and made everyone chase him! It was good to just get out of the house. Wednesday night went a little better, but a bit of the pain lingered around.
Thank you to my Aunt Pam who is here from California to help out. She is wonderful and such a big help even if she thinks she isn't! My Aunt Geralyn is coming from Wyoming next week to do the same. I know my Mom appreciates her sisters being such a strength. It just makes a difference to have them here. (There is about a thousand others who deserve this mention also!)
Today was a good day. Ryan seemed to feel good all day. We had some good laughs and we still harass each other! What are brothers and sisters for? It was a good day. We are hoping tonight goes well also. My parents especially! It is just an experience to care for Ryan, organize all of the supplies, run to stores to get things that are needed, and find time to eat, sit down, or just stop moving for a minute. It is such a blessing to have so much help. The power of prayer is amazing. I literally feel like I have nothing left to give, and then from no where a strength seems to come and keep me going. I know that everyone feels this. There is a very good feeling in the household. A feeling of determination, strength, compassion, and love. Mixed with tiredness, nervousness, and laughter, we have us quite a emotional stew! We do not do this on our own. I know we have said it a million times, but THANK YOU to EVERYONE who has said a prayer, read the website, thought about us, packed, moved, yard saled, visited, brought goodies, or just given us a hug. I know I have left a lot out, but my brain is on empty! We sincerely can't say enough of the support and blessings we have received from our Heavenly Father, people who love and care for Ryan, and our family. Our extended family has been so wonderful in giving of themselves in every aspect. We love you and thank you ALL!
Michelle
P.S. We are still checking the email everyday. Thank you to those who are writing.
Sunday, September 18, 2005
Confidence
We had a great day yesterday. Ryan was feeling pretty good, so we went to the Denver Aquarium. We are both getting more confident in our abilities to maneuver the chair, the van, the vent, the suction bag, and everything else. His new wheelchair is “new and improved”; they have changed the way the vent tray is attached to the chair. This chair is “closed looped” so you can’t hang anything on the handlebars. His attendant will have to carry the three bags that go with him, rather than hanging them on the wheelchair. I feel like Grandpas’ ol’ pack mule!! We talked with the vendor of the chair to see if it could be changed back to the “old” style and the gentleman that we spoke with told me that I just needed to get a large backpack and put all the “stuff” in one bag. I looked at him and thought do I look like I can carry anything on my back, I am almost 50 years old and I can hardly carry myself!! We will have to get home and let Dean figure out how to carry all the extra baggage. Aunt Regina and Cousin Tyrel went with us to the aquarium so they helped carry the “stuff.”
Ryan really enjoyed the outing. We ate lunch in the Aquarium Restaurant which is designed with the tables sitting in a moon fashion around the HUGE aquarium. It was really fun to see all the different types of fishes and sea creatures; their various colors and designs were so brilliant and beautiful. Seeing the countless types of sea creatures reminded us that we do have a Supreme Creator. The menu was mostly fish entrees. Ryan said he didn’t think he could eat fish as we sat there watching them swim by, so he ordered chicken!!
Ryan’s chair wasn’t “plugged” in correctly the night before, we were concerned that the batteries might be depleted before were got back to the hospital. The chair was fine, but at the conclusion of our tour Ryan needed to be suctioned and I couldn’t get the new suction equipment to work. We came back to the hospital and I checked with the respiratory therapist on duty, she took a look at it and one of the hoses was kinked so it couldn’t pull any suction. She told me to hold the tubing a certain way and it should work just fine. It is good to know the “little” things!!
While we were at the aquarium waiting to get a table to eat lunch, a group of people were leaving the restaurant and a “grandma” came up to Ryan and asked him what kind of chair he had. We had to look at the labels on the chair in order to tell her!! She told us that she had a grandson that was in a very similar chair. She said that he had been on a vent since he was three years old and he is now 27 and just finished college. We talked for a little bit about Medicaid and she told me that her grandson had a very good “advocate” working on his behalf in order to get the maximum benefits, “because they will try and cut your benefits if you let them.” She gave me her number and asked me to call her and she would help me work thru some of the “red tape.” It was great!! I told her that we are going home on Tuesday and as soon as we got settled I would give her a call. It is so nice that people are so willing to help and share their experiences and knowledge as to how to make all of this work best.
It wears Ryan out to go on an outing; he fell asleep at eight o’clock and didn’t wake up until morning. He was glad to have slept all night.
Prior to us leaving the hospital, for the aquarium, one of the tech’s, respiratory therapist, and I were getting Ryan dressed. The respiratory therapist had “fumble fingers” and just couldn’t get any of the tubing to connect correctly. She kept dropping things and couldn’t get anything to work right; we were teasing her and giving her a hard time. The last time she dropped one of the tubing connections she used a swear word and I teasingly gave her a hard time. She was so embarrassed and said, “I didn’t say it, I didn’t say it!!” Jackie then told us that the “word” in the staff room was that who ever worked with Ryan needed to be sure and control themselves by not using that type of language. I was some what taken back and then I realized that Ryan has such a presence about him and is somewhat set apart from most of the patients in the hospital. As we go to our apartment at night, we see several of the patients at a round table playing poker and being quiet boisterous!! At times some of the guys make snide comments about some of the young staff members. I think that it is somewhat refreshing and probably unusual to see a young man be respectful of others.
We are all packed and ready to go home on Tuesday. We will finish working on a few last minute details tomorrow and then be on an air ambulance Tuesday morning. One of the respiratory therapists is going to go home with us and stay for a day to do some training with the healthcare givers in Farmington. We are excited to go home, but somewhat apprehensive! Hopefully the Lord will quicken our minds and help us to be perceptive of Ryan’s needs.
As we left the Singles Ward Sacrament meeting today, it was kinda sad to say our goodbyes to the awesome young people who have befriend Ryan over the last couple of months. We have grown to love and appreciate them; they have been so good to him. I know we will find the same kind of friends where ever we go.
Love,
Dean, Terry and Ryan
Ryan really enjoyed the outing. We ate lunch in the Aquarium Restaurant which is designed with the tables sitting in a moon fashion around the HUGE aquarium. It was really fun to see all the different types of fishes and sea creatures; their various colors and designs were so brilliant and beautiful. Seeing the countless types of sea creatures reminded us that we do have a Supreme Creator. The menu was mostly fish entrees. Ryan said he didn’t think he could eat fish as we sat there watching them swim by, so he ordered chicken!!
Ryan’s chair wasn’t “plugged” in correctly the night before, we were concerned that the batteries might be depleted before were got back to the hospital. The chair was fine, but at the conclusion of our tour Ryan needed to be suctioned and I couldn’t get the new suction equipment to work. We came back to the hospital and I checked with the respiratory therapist on duty, she took a look at it and one of the hoses was kinked so it couldn’t pull any suction. She told me to hold the tubing a certain way and it should work just fine. It is good to know the “little” things!!
While we were at the aquarium waiting to get a table to eat lunch, a group of people were leaving the restaurant and a “grandma” came up to Ryan and asked him what kind of chair he had. We had to look at the labels on the chair in order to tell her!! She told us that she had a grandson that was in a very similar chair. She said that he had been on a vent since he was three years old and he is now 27 and just finished college. We talked for a little bit about Medicaid and she told me that her grandson had a very good “advocate” working on his behalf in order to get the maximum benefits, “because they will try and cut your benefits if you let them.” She gave me her number and asked me to call her and she would help me work thru some of the “red tape.” It was great!! I told her that we are going home on Tuesday and as soon as we got settled I would give her a call. It is so nice that people are so willing to help and share their experiences and knowledge as to how to make all of this work best.
It wears Ryan out to go on an outing; he fell asleep at eight o’clock and didn’t wake up until morning. He was glad to have slept all night.
Prior to us leaving the hospital, for the aquarium, one of the tech’s, respiratory therapist, and I were getting Ryan dressed. The respiratory therapist had “fumble fingers” and just couldn’t get any of the tubing to connect correctly. She kept dropping things and couldn’t get anything to work right; we were teasing her and giving her a hard time. The last time she dropped one of the tubing connections she used a swear word and I teasingly gave her a hard time. She was so embarrassed and said, “I didn’t say it, I didn’t say it!!” Jackie then told us that the “word” in the staff room was that who ever worked with Ryan needed to be sure and control themselves by not using that type of language. I was some what taken back and then I realized that Ryan has such a presence about him and is somewhat set apart from most of the patients in the hospital. As we go to our apartment at night, we see several of the patients at a round table playing poker and being quiet boisterous!! At times some of the guys make snide comments about some of the young staff members. I think that it is somewhat refreshing and probably unusual to see a young man be respectful of others.
We are all packed and ready to go home on Tuesday. We will finish working on a few last minute details tomorrow and then be on an air ambulance Tuesday morning. One of the respiratory therapists is going to go home with us and stay for a day to do some training with the healthcare givers in Farmington. We are excited to go home, but somewhat apprehensive! Hopefully the Lord will quicken our minds and help us to be perceptive of Ryan’s needs.
As we left the Singles Ward Sacrament meeting today, it was kinda sad to say our goodbyes to the awesome young people who have befriend Ryan over the last couple of months. We have grown to love and appreciate them; they have been so good to him. I know we will find the same kind of friends where ever we go.
Love,
Dean, Terry and Ryan
Saturday, September 17, 2005
Amazing
Ryan had a rough couple of nights. He didn’t sleep well Wednesday night because of pain. Thursday night he didn’t sleep at all. I took my favorite grandson, Tristen, over to the apartment to put him to sleep and Michelle stayed with Ryan until about 1:30 a.m. when Ryan made her leave because she was driving home by herself with the baby Friday morning. When she got to the apartment, she told me that Ryan was in a lot of pain and was having a difficult time relaxing. About ten minutes later my cell phone rang and it was the 3-West nurses’ station letting me know that Ryan wanted me to come to his room. I quickly got dress and went to his room; he was in terrible pain. He said that it was worse than a week or so ago – the worst yet. I “ranged” his arms and legs for a little over an hour to try and help him relax; it helped a little bit. He thought he was feeling better and told me to go back “home!!” I said, “Have we been here long enough it feels like home!!” We chuckled and then I left. As soon as I got back to the apartment my cell phone rang again. The 3-West nurses’ station was on the other end telling me that Ryan wanted me to come back to his room. Luckily, we are only across the street so it isn’t too far. But, it is dark and cold at 3:00 a.m. and the front doors of the hospital are locked so we have to go to the back doors to get in. It is pretty well lit, but it is still scary for me!! I’m a big baby!!
When I got back to his room, he was in tears he hurt so badly. Our favorite night nurse, Shelly, was in his room taking his vital signs and seeing what she could do to help. His temperature was elevated a little, but blood pressure was normal. They had given him three different kinds of pain medication to try and help the pain – but to no avail. Shelly called the nurses station and asked for another nurse to come into Ryan’s room. Shelly asked Jill to call the doctor to see if he would approve some addition meds. He agreed; Ryan took more drugs!!
He amazes me, even when he is in so much pain he is more concerned with others well-being than he is his own. The nurses would come in, ask if they could do anything, he would replay, “No, thanks, but I appreciate you checking!” We all felt so bad that we couldn’t do much to help him. We read scriptures for a little bit and then I read him his Patriarchal Blessing and we had a sweet conversation, he told me among other things, “Mom, this isn’t fair to you.” What do you say!! I wouldn’t want to be anywhere else and I would do anything to help him, but everything we tried just wasn’t working.
At about 5:00 a.m. he still wasn’t feeling any better so we called Bishop Hatch and Elder Mease to see if we could have someone come and give him a blessing. Elder Mease and Elder Sanders arrived in short order and as usual, they were more than happy to come – even if it was early in the morning. Ryan apologized several times for getting them up and out of bed so early in the morning. They told him, “No, apology necessary” and that it didn’t matter what time he called they would be more than happy to come. After they visited for a few minutes, he thanked them and they left and Ryan was able to finally feel some relief and get some rest. I left about 6:45 a.m., after he had gone to sleep, and went back over to the apartment to try and catch some zzzzzzzzzz’s. Before I left I asked the staff to make sure the day shift knew what kind of night he had had and to please be very quiet when they went into his room, as not to wake him.
After running a couple of errands, I got back to his room about 10:00 a.m. and he was snoring soundly. He had a “positioning” class at one o’clock, to finish up fitting his manual chair and Physical therapy and Occupational therapy needed him to get up and be in his chair for a couple of hours – he happily obliged – sleeping thru most of the class!! After the class he went back to bed and slept until late evening when we had a knock at the door and his Aunt Regina and cousin Tyrell came in. It was fun visiting with them and catching up on the Griffin family.
We are so grateful for the blessings of those who are so willing to be of assistance, at a moments notice, day or night. We continue to pray that Ryan will be able to endure this trial.
Love to all,
Dean, Terry and Ryan
P.S. We were told today that we will be going home Tuesday, September 20th!! We aren’t sure whether to be thrilled or wait and see what happens this weekend!!
When I got back to his room, he was in tears he hurt so badly. Our favorite night nurse, Shelly, was in his room taking his vital signs and seeing what she could do to help. His temperature was elevated a little, but blood pressure was normal. They had given him three different kinds of pain medication to try and help the pain – but to no avail. Shelly called the nurses station and asked for another nurse to come into Ryan’s room. Shelly asked Jill to call the doctor to see if he would approve some addition meds. He agreed; Ryan took more drugs!!
He amazes me, even when he is in so much pain he is more concerned with others well-being than he is his own. The nurses would come in, ask if they could do anything, he would replay, “No, thanks, but I appreciate you checking!” We all felt so bad that we couldn’t do much to help him. We read scriptures for a little bit and then I read him his Patriarchal Blessing and we had a sweet conversation, he told me among other things, “Mom, this isn’t fair to you.” What do you say!! I wouldn’t want to be anywhere else and I would do anything to help him, but everything we tried just wasn’t working.
At about 5:00 a.m. he still wasn’t feeling any better so we called Bishop Hatch and Elder Mease to see if we could have someone come and give him a blessing. Elder Mease and Elder Sanders arrived in short order and as usual, they were more than happy to come – even if it was early in the morning. Ryan apologized several times for getting them up and out of bed so early in the morning. They told him, “No, apology necessary” and that it didn’t matter what time he called they would be more than happy to come. After they visited for a few minutes, he thanked them and they left and Ryan was able to finally feel some relief and get some rest. I left about 6:45 a.m., after he had gone to sleep, and went back over to the apartment to try and catch some zzzzzzzzzz’s. Before I left I asked the staff to make sure the day shift knew what kind of night he had had and to please be very quiet when they went into his room, as not to wake him.
After running a couple of errands, I got back to his room about 10:00 a.m. and he was snoring soundly. He had a “positioning” class at one o’clock, to finish up fitting his manual chair and Physical therapy and Occupational therapy needed him to get up and be in his chair for a couple of hours – he happily obliged – sleeping thru most of the class!! After the class he went back to bed and slept until late evening when we had a knock at the door and his Aunt Regina and cousin Tyrell came in. It was fun visiting with them and catching up on the Griffin family.
We are so grateful for the blessings of those who are so willing to be of assistance, at a moments notice, day or night. We continue to pray that Ryan will be able to endure this trial.
Love to all,
Dean, Terry and Ryan
P.S. We were told today that we will be going home Tuesday, September 20th!! We aren’t sure whether to be thrilled or wait and see what happens this weekend!!
Wednesday, September 14, 2005
Poppin' Wheelies
Dean and I traded places again!! Our lives are in such disarray, but it was good to be back here with Ryan. The airlines have “tagged” us as we keep buying one-way tickets, since we can’t plan very far ahead. Last week when I went home, I got the “wand” treatment and they took about 20 minutes to search my purse – they were sorely disappointed!! Dean and I pass notes on the way to and from the airport as to what we need to accomplish in each destination. It will be nice when we can spend more than the drive to the airport together!! Michelle, Tristen and I had a nice drive up from Farmington, yesterday. It’s nice it is such a pleasant drive – Colorado is a beautiful State.
We learned today that Ryan can pop-a-wheelie in his 650lb chair!! Kevin, his cousin, asked me while I was in Farmington if Ryan had tried to pop-a-wheelie. I said, “No, he doesn’t do that!” Kevin said, “Or, that you know about!” Well, he can do it!! Gayle, his Occupational Therapist, wanted to show Ryan how to pop-a-curb in his power chair. She said that she didn’t show this maneuver to very many people, but she liked Ryan so she was going to share the information! The reasoning for showing Ryan how to do this is so if he gets into a situation “in the real world” that doesn’t have curb cuts, he will be able to maneuver his chair. We went outside and found a 2”-2 ½” curb, his chair would have a hard time getting over any higher curb because of clearance for the batteries.
Gayle took Ryan’s old chair to show him how it was done. First she tilted the chair back a little bit so the footrests would clear the curb and then she used the “attendant drive” and brought the front tires right up to the curb. Next, she put the chair in gear and “popped” the front tires over the curb. She then slowly moved the chair forward until the back tires hit the curb, then again “gave it some gas” and “popped” the back tires over the curb. Gayle is somewhat apprehensive about Ryan’s driving, she is always telling him to slow down. I always remind her that he is a typical “boy” and likes to drive fast!! Just a side note, Gayle and Ryan have become fast friends; they tease each other unmercifully and are always joking and laughing and having a great time. She is really good to Ryan.
Now it is Ryan’s turn! Gayle reminds him for the “fifth time” to go SLOW so that he won’t jolt his neck and head. Ryan moves his chair up to the curb at a snails pace and Gayle is “so proud” of him. He “puffed” into the straw very gently and the front tires “popped” over the curb without any effort. Gayle told him to move forward slowly until the back tires hit the curb; Ryan complied. She was so proud of him for going so slow! Gayle said, “OK, Ryan now you are going to give it a little bit of juice and the back tires will pop the curb.” So Ryan, again very gently puffed into the straw and the back tires turned, but couldn’t make it over the curb. Gayle then said, “OK, give it a little more juice.” Ryan did and still the tires wouldn’t “pop” the curb. Gayle then said, “Give it a little more,” Ryan did and you could see the tires spinning, all at once they took hold and “POPPED” the curb!!! He was going so fast, the front tires didn’t hit the ground for about five or six feet. Gayle and I were stunned and then chased him across the sidewalk before he hit the tree trunk. The branches on the tree were low enough that by the time he stopped he was sitting with the branches in his face!! With the biggest grin ever Ryan said, “That was awesome, I want to do it again!!” Gayle breathlessly said, “NO!” Then we all started laughing. You really should have been here – it was hilarious!! What Gayle had forgotten about was the extra weight on the back of Ryan’s chair which was not on the other chair; the vent, suction bag, ambu bag, etc. added quiet a bit more weight. We were sure grateful there wasn’t a brick wall across the sidewalk, just a nice cushiony lawn!
After much adjusting, Respiratory thinks they have the vent settings where they need to be. The Pulmonologist came in this afternoon and said that the blood gas tests are coming back in the “normal” range with the cuff up or down. They have figured out that they need to have 116”s of vent tubing when the cuff is down and 74”s when the cuff is up at night. Hopefully, we are on the right track now.
We are surely grateful that he doesn’t have any heart problems. This afternoon one of the Respiratory Therapists was going thru each detail of the vent that we will be taking home and I just started crying. Some minutes I just can’t even believe that this is happening. Then we have a nice visit from someone in Ryan’s ward and they lift our spirits and we can go again.
We are so grateful to all those in Farmington who have given us a hand in trying to get settled into a new home with new circumstances. I don’t know if I made a bigger mess or helped get some of it put away, but we are now able to get thru the front door!! The car won’t be parked in the garage for a very long time though! It is very difficult to express in words our sincere thanks and appreciation to all of you. But, Thank You.
We realize that we are not the only ones facing hardships or trials, may the Lord bless each of you in your life’s endeavors.
Love,
Dean, Terry and Ryan
We learned today that Ryan can pop-a-wheelie in his 650lb chair!! Kevin, his cousin, asked me while I was in Farmington if Ryan had tried to pop-a-wheelie. I said, “No, he doesn’t do that!” Kevin said, “Or, that you know about!” Well, he can do it!! Gayle, his Occupational Therapist, wanted to show Ryan how to pop-a-curb in his power chair. She said that she didn’t show this maneuver to very many people, but she liked Ryan so she was going to share the information! The reasoning for showing Ryan how to do this is so if he gets into a situation “in the real world” that doesn’t have curb cuts, he will be able to maneuver his chair. We went outside and found a 2”-2 ½” curb, his chair would have a hard time getting over any higher curb because of clearance for the batteries.
Gayle took Ryan’s old chair to show him how it was done. First she tilted the chair back a little bit so the footrests would clear the curb and then she used the “attendant drive” and brought the front tires right up to the curb. Next, she put the chair in gear and “popped” the front tires over the curb. She then slowly moved the chair forward until the back tires hit the curb, then again “gave it some gas” and “popped” the back tires over the curb. Gayle is somewhat apprehensive about Ryan’s driving, she is always telling him to slow down. I always remind her that he is a typical “boy” and likes to drive fast!! Just a side note, Gayle and Ryan have become fast friends; they tease each other unmercifully and are always joking and laughing and having a great time. She is really good to Ryan.
Now it is Ryan’s turn! Gayle reminds him for the “fifth time” to go SLOW so that he won’t jolt his neck and head. Ryan moves his chair up to the curb at a snails pace and Gayle is “so proud” of him. He “puffed” into the straw very gently and the front tires “popped” over the curb without any effort. Gayle told him to move forward slowly until the back tires hit the curb; Ryan complied. She was so proud of him for going so slow! Gayle said, “OK, Ryan now you are going to give it a little bit of juice and the back tires will pop the curb.” So Ryan, again very gently puffed into the straw and the back tires turned, but couldn’t make it over the curb. Gayle then said, “OK, give it a little more juice.” Ryan did and still the tires wouldn’t “pop” the curb. Gayle then said, “Give it a little more,” Ryan did and you could see the tires spinning, all at once they took hold and “POPPED” the curb!!! He was going so fast, the front tires didn’t hit the ground for about five or six feet. Gayle and I were stunned and then chased him across the sidewalk before he hit the tree trunk. The branches on the tree were low enough that by the time he stopped he was sitting with the branches in his face!! With the biggest grin ever Ryan said, “That was awesome, I want to do it again!!” Gayle breathlessly said, “NO!” Then we all started laughing. You really should have been here – it was hilarious!! What Gayle had forgotten about was the extra weight on the back of Ryan’s chair which was not on the other chair; the vent, suction bag, ambu bag, etc. added quiet a bit more weight. We were sure grateful there wasn’t a brick wall across the sidewalk, just a nice cushiony lawn!
After much adjusting, Respiratory thinks they have the vent settings where they need to be. The Pulmonologist came in this afternoon and said that the blood gas tests are coming back in the “normal” range with the cuff up or down. They have figured out that they need to have 116”s of vent tubing when the cuff is down and 74”s when the cuff is up at night. Hopefully, we are on the right track now.
We are surely grateful that he doesn’t have any heart problems. This afternoon one of the Respiratory Therapists was going thru each detail of the vent that we will be taking home and I just started crying. Some minutes I just can’t even believe that this is happening. Then we have a nice visit from someone in Ryan’s ward and they lift our spirits and we can go again.
We are so grateful to all those in Farmington who have given us a hand in trying to get settled into a new home with new circumstances. I don’t know if I made a bigger mess or helped get some of it put away, but we are now able to get thru the front door!! The car won’t be parked in the garage for a very long time though! It is very difficult to express in words our sincere thanks and appreciation to all of you. But, Thank You.
We realize that we are not the only ones facing hardships or trials, may the Lord bless each of you in your life’s endeavors.
Love,
Dean, Terry and Ryan
Monday, September 12, 2005
New Medical Terms
Saturday after a rocky start, we had a pretty good day. One of Ryan’s medicines (proametene) is scheduled for 8:00 am. (This is one to help with his passing out). When the nurse found out that he wasn’t going to get up at that time, she made the decision to delay giving him the med. She told Ryan that he could get it at 10:00 am. Well, she forgot to give to him and then when she finally did come in she took his blood pressure and felt like it was too high and that he didn’t need it. Twenty minutes later she retook it and his pressure was fine. Ryan was having a hard time with her and finally told her to get out that he didn’t want the medicine. She said that she was only making some nursing decisions and didn’t feel like it was the best decision for Ryan to make. He said, I don’t care, just get out. Boy is he frustrated with people and most of all that he wants to get out of the hospital. Even if the Craig Hospital is one of the best centers around for treating spinal cord and brain injuries, it still is a hospital. Ryan got up around later in the morning and then we spent part of the afternoon outside in the beautiful Denver weather. Later in the afternoon, his cousin Courtney came to visit. She is going to school in Laramie and living the normal college life. Never enough $$$, too much home work, too busy at her job etc., etc., etc… It was great to have her come and visit. (Ryan and I both agree, she makes some of the best chocolate chip cookies we have had. They were delicious. Don’t let this discourage the rest of you from keeping up your attempts; but there has to be a standard. Practice makes perfect; and we are more than willing to help you achieve perfection)
Ryan is keeping the Doc’s and Respitory Therapists busy trying to figure out his breathing (or lack thereof). His CO2 levels will swing wildly in just a few minutes and they can not figure out why. It is definitely not the norm and they are stumped by his readings. Usually, when a persons cuff is deflated (when he has a voice), the volumes go down, but Ryan’s go up; just opposite of what they should do. Dr. Smith (pulmonology) thought that perhaps he was assisting the breathing process on his own and was messing up the readings (Go Ryan Go) and wanted to test his ability to contribute a breath on his own. So they unhooked the vent and put two different meters to test his ability to breath on his own, (or at least to assist), but nothing has changed. He is NOT able to move the gauge or help with the breathing. So they still have no answers, only more questions.
Terry, Scott, Becky, Michelle and Tristen, have been busy in Farmington trying to get the house set up and ready for Ryan and Terry and I to come home to live. Last night I spoke with Scott and he was wondering if Terry and I slept in separate rooms. He saw some of my clothes in one of the bed rooms and an empty bed in the other room. I said no, but it has been a month since Terry has been to Farmington and we only had the other bed delivered yesterday. Our lives are in a certain amount of chaos as we travel back and forth.
Sunday morning we got up and went to the Maplewood Singles Ward. It is great to get out and feel of the love and strength of the young people there. We have mentioned it several times how great they have been to us and Ryan. Thank you, so much. After church we came back and had a nice Sunday afternoon nap. Ryan has been feeling pretty good today.
Monday morning has been pretty quite. Ryan is scheduled for his heart test at 1:30 this afternoon and is restricted from any food or water until then. This morning Lonnie (head of respiratory) has been monitoring Ryan’s breathing and his CO2 levels. For you medical types his vent settings are:
Doc. Balazy came in on rounds today and told Ryan that he was weird. I guess this a new type of medical lingo when they can’t figure out what is wrong. Ryan just smiled and told the Doc that he was headed home next week with or without his approval. He was just going to hook up a charger on his power chair if he had to and he could find him out on the interstate heading for home. It is nice to see Ryan feeling a little better.
This afternoon we went to Swedish for his heart test. First they put him on a tilt table to see if they could get him to pass out. It worked. After just a few minutes they had to lay him back down as he was getting dizzy and light headed. But they were able to monitor his heart rate during the test and found no problems with his heart. Dr. Sheehan thought his passing out was because of low blood pressure and suggested to Dr. Balazy that they increase him proametene. The other test they did was an echo of the heart. Again, everything was OK. We got back from Swedish around 4:00 o’clock and since he hadn’t had anything to eat or drink we decided to go out for a meal. (Beef stir fry and chicken enchiladas on the cafeteria menu didn’t sound too appealing to him). Later this evening we went to a movie (Red Eye). It was suspenseful and we enjoyed the night out. Ryan has been feeling pretty good the last few days. It is great to have some good days to mix in with the challenging ones. We pray and hope for many more.
Dean, Terry and Ryan
Ryan is keeping the Doc’s and Respitory Therapists busy trying to figure out his breathing (or lack thereof). His CO2 levels will swing wildly in just a few minutes and they can not figure out why. It is definitely not the norm and they are stumped by his readings. Usually, when a persons cuff is deflated (when he has a voice), the volumes go down, but Ryan’s go up; just opposite of what they should do. Dr. Smith (pulmonology) thought that perhaps he was assisting the breathing process on his own and was messing up the readings (Go Ryan Go) and wanted to test his ability to contribute a breath on his own. So they unhooked the vent and put two different meters to test his ability to breath on his own, (or at least to assist), but nothing has changed. He is NOT able to move the gauge or help with the breathing. So they still have no answers, only more questions.
Terry, Scott, Becky, Michelle and Tristen, have been busy in Farmington trying to get the house set up and ready for Ryan and Terry and I to come home to live. Last night I spoke with Scott and he was wondering if Terry and I slept in separate rooms. He saw some of my clothes in one of the bed rooms and an empty bed in the other room. I said no, but it has been a month since Terry has been to Farmington and we only had the other bed delivered yesterday. Our lives are in a certain amount of chaos as we travel back and forth.
Sunday morning we got up and went to the Maplewood Singles Ward. It is great to get out and feel of the love and strength of the young people there. We have mentioned it several times how great they have been to us and Ryan. Thank you, so much. After church we came back and had a nice Sunday afternoon nap. Ryan has been feeling pretty good today.
Monday morning has been pretty quite. Ryan is scheduled for his heart test at 1:30 this afternoon and is restricted from any food or water until then. This morning Lonnie (head of respiratory) has been monitoring Ryan’s breathing and his CO2 levels. For you medical types his vent settings are:
- Tidal volume is set at 1400
- His rate per minute is 13
- The 1:E ratio is 1:2.1
- The flow rate is 90
- The peep has been lowered to 2
- When his cuff is up (no voice) he has 115 inches of dead air space
- When his cuff is down he had 74 inches of dead air space
- His CO2 level is around 30
Doc. Balazy came in on rounds today and told Ryan that he was weird. I guess this a new type of medical lingo when they can’t figure out what is wrong. Ryan just smiled and told the Doc that he was headed home next week with or without his approval. He was just going to hook up a charger on his power chair if he had to and he could find him out on the interstate heading for home. It is nice to see Ryan feeling a little better.
This afternoon we went to Swedish for his heart test. First they put him on a tilt table to see if they could get him to pass out. It worked. After just a few minutes they had to lay him back down as he was getting dizzy and light headed. But they were able to monitor his heart rate during the test and found no problems with his heart. Dr. Sheehan thought his passing out was because of low blood pressure and suggested to Dr. Balazy that they increase him proametene. The other test they did was an echo of the heart. Again, everything was OK. We got back from Swedish around 4:00 o’clock and since he hadn’t had anything to eat or drink we decided to go out for a meal. (Beef stir fry and chicken enchiladas on the cafeteria menu didn’t sound too appealing to him). Later this evening we went to a movie (Red Eye). It was suspenseful and we enjoyed the night out. Ryan has been feeling pretty good the last few days. It is great to have some good days to mix in with the challenging ones. We pray and hope for many more.
Dean, Terry and Ryan
Sunday, September 11, 2005
The Branch of a Russian Olive
Last Friday night, after the latest blog update had been sent out, Ryan and I had a wonderful thing happen. One of the tech’s, Phillip Price, has become very close to Ryan. He brought in a nice carving with Ryan’s favorite scripture hand carved into the wood. It was a beautiful gesture and gave us renewed strength and hope; particularly with the day that we had just experienced. Phillip told me his thoughts concerning the experience that he and his family had while working on this project and I got his permission to include it below…
“The Branch of a Russian Olive”
This is a story told from two different points of view; the point of view from the branch and the point of view from the craftsman. We will start this story just like so many others with ‘once upon a time’.
Once upon a time there was a branch. It was part of a Russian olive tree. The branch could look down on the stream that it grew next to and see its reflection. It could watch itself sway in the wind; see the beauty of its green leaves and was quite happy and content with its life. One day disaster struck. The branch was cut off by a beaver, looking for wood to build a den. The branch could not imagine anything worse happening. It would no longer be able to sway in the wind, watch itself in the stream or bear new leaves in the spring. Its life was cut short and now it floats down the stream to become a part of the beaver’s home. And time passed…..
One day a craftsman sent his son out looking for a certain piece of wood; something very specific. He told his son he wanted a piece of wood that had strength and beauty within it; but had been changed by the things around it. The craftsman’s son knew exactly where to search. He had seen something like it shortly before. The craftsman’s son brought back a piece of wood that had been cut short by a beaver. It still held the marks of the beaver’s teeth. It was muddy and battered. The craftsman smiled.
The branch was sitting in the stream, and the boy came along and picked it up. The boy looked closely at the branch and his eyebrows shot up and he smiled. The branch wondered why the boy would smile and wondered what would come next, if the boy took him. The branch thought I have already lost so much; I am battered and covered with mud. Why would this boy want me? Maybe things are going to get even worse. When the boy brought the branch to the man, the man smiled. The branch was even more puzzled; why would this man smile? I am not what I once was. The man praised the boy for what he had found. The branch began to have an inkling that perhaps there was something going on that it didn’t understand; from deep within, hope arose.
The craftsman labored long and hard on the branch. The tools cut into the branch and the branch worried it would be even uglier, but all throughout, the craftsman smiled. One day the branch was attached to a piece of wood that was beautiful and shinny. The branch thought why would they waste this wood on me? But just by happenstance it was placed in front of a mirror and the branch saw what had been carved out within it. It finally understood what it had carried within all along was beautiful and that all of the circumstances it had gone through had led to its being different, but stronger, and perhaps even more beautiful, showing to the world a principle and a truth that it had carried within all along”. Phillip Price - September 2005
It is so refreshing to be reminded that people are generally good and then you have an experience like this one which reinforces the fact there are indeed exceptional people who have the will to help uplift another soul. We are so grateful and strengthen by the many people that have reached out to us and given us strength at this time.
Dean, Terry and Ryan
P.S. Ryan’s favorite scripture is 1st Corinthians 10:13
“The Branch of a Russian Olive”
This is a story told from two different points of view; the point of view from the branch and the point of view from the craftsman. We will start this story just like so many others with ‘once upon a time’.
Once upon a time there was a branch. It was part of a Russian olive tree. The branch could look down on the stream that it grew next to and see its reflection. It could watch itself sway in the wind; see the beauty of its green leaves and was quite happy and content with its life. One day disaster struck. The branch was cut off by a beaver, looking for wood to build a den. The branch could not imagine anything worse happening. It would no longer be able to sway in the wind, watch itself in the stream or bear new leaves in the spring. Its life was cut short and now it floats down the stream to become a part of the beaver’s home. And time passed…..
One day a craftsman sent his son out looking for a certain piece of wood; something very specific. He told his son he wanted a piece of wood that had strength and beauty within it; but had been changed by the things around it. The craftsman’s son knew exactly where to search. He had seen something like it shortly before. The craftsman’s son brought back a piece of wood that had been cut short by a beaver. It still held the marks of the beaver’s teeth. It was muddy and battered. The craftsman smiled.
The branch was sitting in the stream, and the boy came along and picked it up. The boy looked closely at the branch and his eyebrows shot up and he smiled. The branch wondered why the boy would smile and wondered what would come next, if the boy took him. The branch thought I have already lost so much; I am battered and covered with mud. Why would this boy want me? Maybe things are going to get even worse. When the boy brought the branch to the man, the man smiled. The branch was even more puzzled; why would this man smile? I am not what I once was. The man praised the boy for what he had found. The branch began to have an inkling that perhaps there was something going on that it didn’t understand; from deep within, hope arose.
The craftsman labored long and hard on the branch. The tools cut into the branch and the branch worried it would be even uglier, but all throughout, the craftsman smiled. One day the branch was attached to a piece of wood that was beautiful and shinny. The branch thought why would they waste this wood on me? But just by happenstance it was placed in front of a mirror and the branch saw what had been carved out within it. It finally understood what it had carried within all along was beautiful and that all of the circumstances it had gone through had led to its being different, but stronger, and perhaps even more beautiful, showing to the world a principle and a truth that it had carried within all along”. Phillip Price - September 2005
It is so refreshing to be reminded that people are generally good and then you have an experience like this one which reinforces the fact there are indeed exceptional people who have the will to help uplift another soul. We are so grateful and strengthen by the many people that have reached out to us and given us strength at this time.
Dean, Terry and Ryan
P.S. Ryan’s favorite scripture is 1st Corinthians 10:13
“There hath no temptation taken you but such as is common to man: but God is faithful, who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it.”
Friday, September 09, 2005
Change in Plans
WE ARE NOT GOING HOME!!!! (At least not next week). When I got off of the plane this morning, (Fri) Terry informed me that our plans have changed. Ryan’s nurse came in this morning and informed him that his discharge date has been changed. With the problems that he has been having with the dizziness and fainting they felt that it might not be such a good idea to send him home until they find out more. DO YOU THINK????? We having been trying to tell them this for the past two months but no one seems to be listening. Now he is on the verge of going home (we were scheduled for next Tuesday the 13th) and all of a sudden they sense a problem. It has been a difficult day.
On one hand we have always put Ryan’s health and well being first and are glad that they are trying to find a solution. On the other hand, where have they been the past two months? Even with all of the challenges that we will face in taking Ryan home, we had a plan and a goal to work toward. Now everything has changed. I don’t think they have a clue what happens behind the scenes to get him home and all of the people it takes on our end to make it all happen. Sorry to those who have been put out and will have to change schedules.
As the details unfolded throughout the day we learned that Ryan had a stat call around 1:00 am. The respiratory therapists have been making changes to his ventilator for the past week or so trying to find a balance that will work for him. After making a change last night the RT left and told Ryan that he would be back in ten minutes or so to check on him. Well about 3 minutes later Ryan was having problems breathing and to make matters worse the call system was not working and he was not able to notify anyone that he needed some help. Can you even imagine what he must have felt? Not only can he not breathe but he has absolutely no way to fix the problem, no one even knows about it. Finally he heard someone walk by in the hallway and used his tongue to make a clicking sound to get their attention. (At night they put his cuff up on his trach so he has no voice). Fortunately they heard the noise and came into the room and found Ryan in distress and a gray or ashen color to his face and called for help. By the time people responded he had passed out and his heart rate had jumped and then fallen. When Dr. Balazy learned of the heart rate rapid change he made the decision to change the discharge date and ordered some tests. Dr. Sheehan (cardiology) came in and explained what they want to do. So starting Monday they will begin a battery of heart tests to find the source of the problem, or more likely eliminate one more area.
Terry said that both she and Ryan had a cry after learning of the change. Emotionally we were struggling to accept the change. We realize the wisdom in doing more tests, but we were focusing on going home not remaining here. In fact sometimes we ourselves wonder if we are crazy to take a ventilator dependant, quadriplegic person to a home setting. (When we consider the alternative, a state facility or nursing home we cannot accept that as an option). To make matter worse the family housing folks got a hold of us and informed us that because we were supposed to be leaving on Tuesday they had already scheduled another person to take over our room and we would need to move out. Some now we are homeless again. (We are looking at options, so we will see.)
Ryan has had a tough day. We tried several times to get him to go outside and do something but he had no desire. He is usually pretty good about going to his classes but when his 3 o’clock class came, he chose to skip it.
Our original plan was for Terry to fly home Friday night and spend a couple of days getting our rental home organized that we have in Farmington. I would stay in Denver with Ryan and then fly home with him Tuesday, but now we trying to figure out a new plan of attack. I tried to move a few boxes around and put out some of the furniture out but you know how guys are. We tend not to notice the small details, so we had Terry go home to “fine tune” things. She flew out this evening. I already miss her (writing this blog can be a challenge). We were glad to have Bishop Hatch and Nancy come by this afternoon. They have been super about visiting and supporting us. Also my cousin, Doran came by to offer his support. It is great to know that we are not in this alone. We are so grateful for all of the help and assistance.
Sincerely Dean, Terry and Ryan
On one hand we have always put Ryan’s health and well being first and are glad that they are trying to find a solution. On the other hand, where have they been the past two months? Even with all of the challenges that we will face in taking Ryan home, we had a plan and a goal to work toward. Now everything has changed. I don’t think they have a clue what happens behind the scenes to get him home and all of the people it takes on our end to make it all happen. Sorry to those who have been put out and will have to change schedules.
As the details unfolded throughout the day we learned that Ryan had a stat call around 1:00 am. The respiratory therapists have been making changes to his ventilator for the past week or so trying to find a balance that will work for him. After making a change last night the RT left and told Ryan that he would be back in ten minutes or so to check on him. Well about 3 minutes later Ryan was having problems breathing and to make matters worse the call system was not working and he was not able to notify anyone that he needed some help. Can you even imagine what he must have felt? Not only can he not breathe but he has absolutely no way to fix the problem, no one even knows about it. Finally he heard someone walk by in the hallway and used his tongue to make a clicking sound to get their attention. (At night they put his cuff up on his trach so he has no voice). Fortunately they heard the noise and came into the room and found Ryan in distress and a gray or ashen color to his face and called for help. By the time people responded he had passed out and his heart rate had jumped and then fallen. When Dr. Balazy learned of the heart rate rapid change he made the decision to change the discharge date and ordered some tests. Dr. Sheehan (cardiology) came in and explained what they want to do. So starting Monday they will begin a battery of heart tests to find the source of the problem, or more likely eliminate one more area.
Terry said that both she and Ryan had a cry after learning of the change. Emotionally we were struggling to accept the change. We realize the wisdom in doing more tests, but we were focusing on going home not remaining here. In fact sometimes we ourselves wonder if we are crazy to take a ventilator dependant, quadriplegic person to a home setting. (When we consider the alternative, a state facility or nursing home we cannot accept that as an option). To make matter worse the family housing folks got a hold of us and informed us that because we were supposed to be leaving on Tuesday they had already scheduled another person to take over our room and we would need to move out. Some now we are homeless again. (We are looking at options, so we will see.)
Ryan has had a tough day. We tried several times to get him to go outside and do something but he had no desire. He is usually pretty good about going to his classes but when his 3 o’clock class came, he chose to skip it.
Our original plan was for Terry to fly home Friday night and spend a couple of days getting our rental home organized that we have in Farmington. I would stay in Denver with Ryan and then fly home with him Tuesday, but now we trying to figure out a new plan of attack. I tried to move a few boxes around and put out some of the furniture out but you know how guys are. We tend not to notice the small details, so we had Terry go home to “fine tune” things. She flew out this evening. I already miss her (writing this blog can be a challenge). We were glad to have Bishop Hatch and Nancy come by this afternoon. They have been super about visiting and supporting us. Also my cousin, Doran came by to offer his support. It is great to know that we are not in this alone. We are so grateful for all of the help and assistance.
Sincerely Dean, Terry and Ryan
Wednesday, September 07, 2005
Preparing for Home
The days are getting longer or the nights are getting shorter – maybe both! The last days at Craig are pretty hectic; trying to get both the manual and power wheelchairs adjusted and fitted, getting all the supplies put together, finding a bed, etc.. With a little “friendly persuasion” we got Craig staff to go beyond their “box” and find a bed that was long enough for Ryan, rather than ordering one that we all knew would not work and then trying to come up with something after we got home. I told the Head Nurse I wanted to find the bed and get it ordered before we went home and if need be we could use a temporary bed until his arrived. I think that once we got home the squeaky wheel wouldn’t get the oil, because the squeaky wheel would be miles away!! “Out of sight out of mind!”
We convinced the respiratory staff to change Ryan’s trach back to the old style Portex from the “new and improved” Bivona. I think Ryan had an allergic reaction or his body was rejecting it. When they removed to Bivona trach it was partially “blocked” so he wasn’t getting enough air. They changed the breathing treatment from a nebulizer mist to an inhaler at the same time so we aren’t sure if the congestion/bronchitis was from the blocked trach or the change in breathing treatment methods. At any rate, he is feeling much better with the “new-old” trach and the “new-old” breathing treatments. It is amazing when he “feels” good, his personality shines through. When he is feeling poorly, he doesn’t smile! He has a hard time hiding his emotions and everyone can tell what kind of a day he is having by reading his facial expressions; I will walk down the hall and the staff will say something like, “Ryan doesn’t look like he his having a good day, is he OK?” or “Sure glad Ryan is feeling better!” I love it when he is feeling good!!
Tonight, Dr. Balazy came in and said that Dr. Falci, the neurosurgeon, had read the MRI results and said that he could take the “hard” collar off. One more step in the right direction!! He is ready for it to be off, but we are a little nervous about his weak neck. He doesn’t have the muscle strength to hold up his head so he will have to wear a “soft” collar for a while and most likely at all times when being transported. A lot of the therapists have said that it looks like he has quiet a bit of movement in his neck; that is encouraging. It will take several weeks or months to rebuild those muscles.
We had a nice visit from one of our cousins, Dave Billingslea. We haven’t seen Dave since 1998 when we were at a Family Reunion near Gallup. Ryan and his two cousins, Tyler and Brett received their Eagle Scout awards, since they were all together, while at the reunion. We have some pictures of the three of them in their Scout uniforms on Ryan’s door and Dave remembered Ryan from that. It was good to catch up on the “good ol’e times” and where and what the families are doing. It was also fun to see the pictures of Dave and his new bride!!
We also had a nice visit yesterday from Brother Gary Zollinger. Bro. Zollinger was so kind to Ryan while assisting him at the Temple on Saturday. He has lung cancer and is on a list for a lung transplant so he wasn’t able to come into Ryan’s room, but he does understand Ryan’s pain. After meeting Ryan for the first time, at the Temple, he wrote Ryan a beautiful letter and shared his favorite scripture from the Book of Mormon with him.
Love,
Dean, Terry and Ryan
We convinced the respiratory staff to change Ryan’s trach back to the old style Portex from the “new and improved” Bivona. I think Ryan had an allergic reaction or his body was rejecting it. When they removed to Bivona trach it was partially “blocked” so he wasn’t getting enough air. They changed the breathing treatment from a nebulizer mist to an inhaler at the same time so we aren’t sure if the congestion/bronchitis was from the blocked trach or the change in breathing treatment methods. At any rate, he is feeling much better with the “new-old” trach and the “new-old” breathing treatments. It is amazing when he “feels” good, his personality shines through. When he is feeling poorly, he doesn’t smile! He has a hard time hiding his emotions and everyone can tell what kind of a day he is having by reading his facial expressions; I will walk down the hall and the staff will say something like, “Ryan doesn’t look like he his having a good day, is he OK?” or “Sure glad Ryan is feeling better!” I love it when he is feeling good!!
Tonight, Dr. Balazy came in and said that Dr. Falci, the neurosurgeon, had read the MRI results and said that he could take the “hard” collar off. One more step in the right direction!! He is ready for it to be off, but we are a little nervous about his weak neck. He doesn’t have the muscle strength to hold up his head so he will have to wear a “soft” collar for a while and most likely at all times when being transported. A lot of the therapists have said that it looks like he has quiet a bit of movement in his neck; that is encouraging. It will take several weeks or months to rebuild those muscles.
We had a nice visit from one of our cousins, Dave Billingslea. We haven’t seen Dave since 1998 when we were at a Family Reunion near Gallup. Ryan and his two cousins, Tyler and Brett received their Eagle Scout awards, since they were all together, while at the reunion. We have some pictures of the three of them in their Scout uniforms on Ryan’s door and Dave remembered Ryan from that. It was good to catch up on the “good ol’e times” and where and what the families are doing. It was also fun to see the pictures of Dave and his new bride!!
We also had a nice visit yesterday from Brother Gary Zollinger. Bro. Zollinger was so kind to Ryan while assisting him at the Temple on Saturday. He has lung cancer and is on a list for a lung transplant so he wasn’t able to come into Ryan’s room, but he does understand Ryan’s pain. After meeting Ryan for the first time, at the Temple, he wrote Ryan a beautiful letter and shared his favorite scripture from the Book of Mormon with him.
Wherefore, whoso believeth in God might with surety hope for a better world, yea, even a place at the right hand of God, which hope cometh of faith, maketh an anchor to the souls of men, which would make them sure and steadfast, always abounding in good works, being led to glorify God. Ether 12:4We continue to have hope and exercise faith that Ryan and our family will endure this test and one day sit at the right hand of God. We are so grateful to our wonderful family and friends, new and old, who continue to love Ryan and try to help him and us thru this trial. At times, when the days get dark and gloomy it is so nice to see a friendly face, or get a nice card, letter, or e-mail to help bear this burden. We are so lucky.
Love,
Dean, Terry and Ryan
Sunday, September 04, 2005
Breathe Deep
This medical stuff is way to complicated for me!! Dr. Balazy came in Thursday and said that the neurosurgeon had read the MRI which was done last week and said the only thing they could see that could remotely contribute the dizziness and blacking out spells was some of the scar tissue from the spinal cord, at the injury point, has attached or “tethered” to the spinal column, which, when he moves his head could possibly tug or pull against the spinal cord, causing the dizziness and black outs. Dr. Blazay said that about 10% of the SCI patients have “tethering” and require surgery. Dr. Falci, the neurosurgeon, said chance that was causing the problem was remote, but possible. He didn’t want to do anything (surgery, etc.) for about a year. I agreed – but what do I know!!
Respiratory also discovered that his CO2 levels are “critically” low; optimal range is 28-35, Ryan’s levels are 13. That in itself can be the cause of the dizziness and blacking out!! Where have they been?? He has had high pressure readings on the vent for several weeks now. At one point in mid-July the respiratory director caught us in the elevator and “tweaked” the vent settings and said, “We need to look at that.” He had one of the respiratory therapists do some testing, but they didn’t look at the CO2 levels. Whoops!!! But, more importantly, we learned that if the CO2 levels are not at optimal levels Ryan will never be able to breathe on his own. We learned that if the diaphragm decides to “kick in” CO2 has to be at optimal levels in order to trigger the diaphragm. I told Dean, after listening to the respiratory therapist’s explanation, it is like starting a car – you have the engine and the keys, if you turn the key and there is no gas, it won’t start. Also, with the CO2 levels as low as they are, the kidneys take over and compensate for the lack of blood gas levels being where they should be – straining the kidneys!! The body is amazing in the fact that some organs, vessels, etc. will compensate when other functions of the body are not in sync; although, it doesn’t fix the problem only creates others. Hopefully, we are on the right track and will make some progress – if he is capable of breathing on his own, this will surely help!
Ryan went down Thursday to have chest x-rays and flex extension x-rays of his neck. In the process of taking him down stairs, Dan, from patient transport, was assisting Ryan when he blacked out, BIG time. It really scared Dan, being that he only transports the patients and doesn’t have a medical background. I started the process of tilting Ryan back in his chair and elevating his legs as Dan ran out the room and called for nursing and respiratory help. After we brought Ryan “back to our world” Dan motioned to me to go outside and speak with him. He said, “We can just wait until tomorrow to go down to x-ray – no harm done.” I said, “No, lets go now.” having just transferred Ryan from bed to chair and being he had had a very bad day on Wednesday, when the x-rays were supposed to be done. I then turned to one of the nurses and quietly asked if she would go with us to ease Dan’s concerns. She agreed and all was well. Ryan just wants to keep everyone on their toes!!
While we were down in x-ray, the technician had readied all the equipment and made sure that Ryan was in the correct position to take a picture of his lungs. She had us all step back behind the glass opening so we wouldn’t get hit with radiation and then she said to Ryan, “breathe deep.” I just started chuckling and she looked at me with a puzzled look on her face and then I pointed to the ventilator. She turned red in the face!
We had a nice day yesterday; we were able to take Ryan to the temple. He was somewhat apprehensive at first – not quite sure how it was all going to work. Once we got there, the temple workers made him feel so welcome and right at home and he was able to relax. Ryan’s Bishop, Bishop Hatch, his wife Nancy, Luke Mease, the Elders Quorum President, Stephanie Zollinger and Kym Gilchrist, ward members, were able to join us. It was really special. I cried most of the time with mixed feelings. Remembering what it was like before his injury and seeing what it is going to be like in the future. I have to keep reminding myself to focus on what he “can” do and not what he “can’t” do.
Our wonderful “Church Family” in Farmington sent is a “Care Package” with lots of notes, cards, goodies, and a light-hearted DVD they had put together. It was way fun to see all of them – even if it was on a DVD. One of our dear friends sent the following poem to Ryan. We know that thru Him, all will be well.
Ryan isn’t feeling very good today and so we did not make it to Sacrament meeting. We sure miss not being able to go to church. The singles ward that Ryan belongs to is so “in tune” with Ryan’s needs and although we weren’t able to get to church, they brought church to us!! They are amazing. We are so grateful to all who have taken the time to support us and love us during this very difficult time. It sure helps to buoy our spirits.
The infectious disease doctor paid us a visit. Dr. Messa is my favorite doctor; she is so easy to talk to. Not only do we talk about Ryan but about life changes and goings-on. I love to see her come, but when she comes it is usually because Ryan has some infection somewhere. Sure enough, he has bronchitis and a bladder infection. That’s solves the puzzle as to why he isn’t feeling well!! She is going to put him on three more meds to trying and clear things up before we go home!! We will Carry On!!
Thanks again for the e-mails, letters, cards, visits, phone calls and most importantly prayers. We love you all.
Dean, Terry and Ryan
Respiratory also discovered that his CO2 levels are “critically” low; optimal range is 28-35, Ryan’s levels are 13. That in itself can be the cause of the dizziness and blacking out!! Where have they been?? He has had high pressure readings on the vent for several weeks now. At one point in mid-July the respiratory director caught us in the elevator and “tweaked” the vent settings and said, “We need to look at that.” He had one of the respiratory therapists do some testing, but they didn’t look at the CO2 levels. Whoops!!! But, more importantly, we learned that if the CO2 levels are not at optimal levels Ryan will never be able to breathe on his own. We learned that if the diaphragm decides to “kick in” CO2 has to be at optimal levels in order to trigger the diaphragm. I told Dean, after listening to the respiratory therapist’s explanation, it is like starting a car – you have the engine and the keys, if you turn the key and there is no gas, it won’t start. Also, with the CO2 levels as low as they are, the kidneys take over and compensate for the lack of blood gas levels being where they should be – straining the kidneys!! The body is amazing in the fact that some organs, vessels, etc. will compensate when other functions of the body are not in sync; although, it doesn’t fix the problem only creates others. Hopefully, we are on the right track and will make some progress – if he is capable of breathing on his own, this will surely help!
Ryan went down Thursday to have chest x-rays and flex extension x-rays of his neck. In the process of taking him down stairs, Dan, from patient transport, was assisting Ryan when he blacked out, BIG time. It really scared Dan, being that he only transports the patients and doesn’t have a medical background. I started the process of tilting Ryan back in his chair and elevating his legs as Dan ran out the room and called for nursing and respiratory help. After we brought Ryan “back to our world” Dan motioned to me to go outside and speak with him. He said, “We can just wait until tomorrow to go down to x-ray – no harm done.” I said, “No, lets go now.” having just transferred Ryan from bed to chair and being he had had a very bad day on Wednesday, when the x-rays were supposed to be done. I then turned to one of the nurses and quietly asked if she would go with us to ease Dan’s concerns. She agreed and all was well. Ryan just wants to keep everyone on their toes!!
While we were down in x-ray, the technician had readied all the equipment and made sure that Ryan was in the correct position to take a picture of his lungs. She had us all step back behind the glass opening so we wouldn’t get hit with radiation and then she said to Ryan, “breathe deep.” I just started chuckling and she looked at me with a puzzled look on her face and then I pointed to the ventilator. She turned red in the face!
We had a nice day yesterday; we were able to take Ryan to the temple. He was somewhat apprehensive at first – not quite sure how it was all going to work. Once we got there, the temple workers made him feel so welcome and right at home and he was able to relax. Ryan’s Bishop, Bishop Hatch, his wife Nancy, Luke Mease, the Elders Quorum President, Stephanie Zollinger and Kym Gilchrist, ward members, were able to join us. It was really special. I cried most of the time with mixed feelings. Remembering what it was like before his injury and seeing what it is going to be like in the future. I have to keep reminding myself to focus on what he “can” do and not what he “can’t” do.
Our wonderful “Church Family” in Farmington sent is a “Care Package” with lots of notes, cards, goodies, and a light-hearted DVD they had put together. It was way fun to see all of them – even if it was on a DVD. One of our dear friends sent the following poem to Ryan. We know that thru Him, all will be well.
The WeaverWe hope we are good pliable fiber!!
My Life is but a weaving
between my Lord and me;
I cannot choose the colors
He worketh steadily.
Oft times He weaveth sorrow
And I, in foolish pride,
Forget He sees the upper,
And I the under side.
Not til the loom is silent
And the shuttles cease to fly,
Shall God unroll the canvas
And explain the reason why.
The dark threads are as needful
In the Weaver's skillful hand,
As the threads of gold and silver
In the pattern He has planned.
He knows, He loves, He cares,
Nothing this truth can dim.
He gives His very best to those
Who leave the choice with Him.
Ryan isn’t feeling very good today and so we did not make it to Sacrament meeting. We sure miss not being able to go to church. The singles ward that Ryan belongs to is so “in tune” with Ryan’s needs and although we weren’t able to get to church, they brought church to us!! They are amazing. We are so grateful to all who have taken the time to support us and love us during this very difficult time. It sure helps to buoy our spirits.
The infectious disease doctor paid us a visit. Dr. Messa is my favorite doctor; she is so easy to talk to. Not only do we talk about Ryan but about life changes and goings-on. I love to see her come, but when she comes it is usually because Ryan has some infection somewhere. Sure enough, he has bronchitis and a bladder infection. That’s solves the puzzle as to why he isn’t feeling well!! She is going to put him on three more meds to trying and clear things up before we go home!! We will Carry On!!
Thanks again for the e-mails, letters, cards, visits, phone calls and most importantly prayers. We love you all.
Dean, Terry and Ryan
Thursday, September 01, 2005
How Big of a Bed?
We have had a busy couple of days. The nurses from Farmington were here the last couple of days to become familiar with Ryan and get some training. I think they learned a lot. Interestingly enough, one of the nurses was our long time Family Doctor’s head nurse and she knew Ryan. Ryan remembered her giving him his shoots before he went on his mission – the things we remember!! Both Karen and Koni were amazed at the amount of care that Ryan requires! I am glad they came so they have an idea of what we are going to need when we get home.
Yesterday, Ryan probably had the worst day he has had since the injury. They are trying to decrease the amount of meds he is taking before he goes home. He has been feeling pretty good, so they decreased the pain meds. BIG mistake! He was in so much pain yesterday he was not even himself. The pain medication that he is on takes about three days to get into the system and about that long to wear off. It all hit Wednesday morning!! Koni and Karen couldn’t believe the change in his demeanor from Tuesday night to Wednesday morning. One of them commented on his big bright smile on Tuesday and then on Wednesday, the pain that was written all over his face. We asked the nurse on duty last night to call Dr. Balazy and see if we could get some pain meds, he agreed and called the pharmacy. Ryan felt a little better today.
With only two weeks to go before we are discharged, the final adjustments are being made to the equipment (i.e., wheelchair adjustments - manual and motorized, bed, ventilator settings, binders, etc. etc.), as well as final sensory testing, and ALL the paperwork. It was all too much yesterday, we were both in tears!! Ryan said, “Mom, tell Koni and Karen that it is not always like this.” He was so worried about what they would think. When they came in this morning, they told Ryan that they were glad they had seen “all that went on” so they would knew what they were up against. They said they had gone to their apartment and felt so bad that he was not feeling well and had so much to deal with. He did have a smile or two for them before they left. They told him the next time they would see him would be in Farmington and things would get better there!! They were so sweet.
It seems they wait to long to get some things done. We are having a problem finding a bed that is long enough for Ryan!! The bed that he is on is 80” long and has a 14” extension. I was doing some measuring to give the insurance company and bed vendors; Ryan measured 83” with foot drop and knees bent. He is LONG!! He had a king size bed when he was home and slept diagonally!! One of the tech’s came in tonight and wondered if we could do with an 84” bed. I pulled the sheet back off of his feet and I wish I would have had a camera – you should have seen the look on her face. She couldn’t believe that he took up almost all 94”s!! She said that she wouldn’t be able to do anything until Monday because she was gone for the weekend; I reminded her that Monday was a Holiday and that some of the bed vendors needed 7 to 10 days to get an “extra-long” bed made and we were leaving on the 13th. I got a blank stare!! Hopefully, we will be able to find something and have it setup before Ryan gets home – or Grandpa will have to build a nite nite bed along with the therapy bed!! Thank goodness for Grandpa!!
We got word today that we still don’t have a primary doctor in Farmington who wants to take Ryan on!! I told Ryan today that I didn’t know how long we could stay there. With any luck, we will find someone to work with him until we can get things in place to make some more life changes, if need be. Hopefully that will work out too. To bad Grandpa isn’t a doctor – oh, he is, just not in the medical field!! Somehow we know that it will work – just wish we had an instruction booklet!
We continue to be blessed with the outpouring of love and support from our wonderful family and friends. Thank you.
Love,
Dean, Terry and Ryan
Yesterday, Ryan probably had the worst day he has had since the injury. They are trying to decrease the amount of meds he is taking before he goes home. He has been feeling pretty good, so they decreased the pain meds. BIG mistake! He was in so much pain yesterday he was not even himself. The pain medication that he is on takes about three days to get into the system and about that long to wear off. It all hit Wednesday morning!! Koni and Karen couldn’t believe the change in his demeanor from Tuesday night to Wednesday morning. One of them commented on his big bright smile on Tuesday and then on Wednesday, the pain that was written all over his face. We asked the nurse on duty last night to call Dr. Balazy and see if we could get some pain meds, he agreed and called the pharmacy. Ryan felt a little better today.
With only two weeks to go before we are discharged, the final adjustments are being made to the equipment (i.e., wheelchair adjustments - manual and motorized, bed, ventilator settings, binders, etc. etc.), as well as final sensory testing, and ALL the paperwork. It was all too much yesterday, we were both in tears!! Ryan said, “Mom, tell Koni and Karen that it is not always like this.” He was so worried about what they would think. When they came in this morning, they told Ryan that they were glad they had seen “all that went on” so they would knew what they were up against. They said they had gone to their apartment and felt so bad that he was not feeling well and had so much to deal with. He did have a smile or two for them before they left. They told him the next time they would see him would be in Farmington and things would get better there!! They were so sweet.
It seems they wait to long to get some things done. We are having a problem finding a bed that is long enough for Ryan!! The bed that he is on is 80” long and has a 14” extension. I was doing some measuring to give the insurance company and bed vendors; Ryan measured 83” with foot drop and knees bent. He is LONG!! He had a king size bed when he was home and slept diagonally!! One of the tech’s came in tonight and wondered if we could do with an 84” bed. I pulled the sheet back off of his feet and I wish I would have had a camera – you should have seen the look on her face. She couldn’t believe that he took up almost all 94”s!! She said that she wouldn’t be able to do anything until Monday because she was gone for the weekend; I reminded her that Monday was a Holiday and that some of the bed vendors needed 7 to 10 days to get an “extra-long” bed made and we were leaving on the 13th. I got a blank stare!! Hopefully, we will be able to find something and have it setup before Ryan gets home – or Grandpa will have to build a nite nite bed along with the therapy bed!! Thank goodness for Grandpa!!
We got word today that we still don’t have a primary doctor in Farmington who wants to take Ryan on!! I told Ryan today that I didn’t know how long we could stay there. With any luck, we will find someone to work with him until we can get things in place to make some more life changes, if need be. Hopefully that will work out too. To bad Grandpa isn’t a doctor – oh, he is, just not in the medical field!! Somehow we know that it will work – just wish we had an instruction booklet!
We continue to be blessed with the outpouring of love and support from our wonderful family and friends. Thank you.
Love,
Dean, Terry and Ryan
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