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
Wednesday, September 28, 2005
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
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