We had our Family Conference today. It was kinda like Family Home Evening when some of the family shows up but doesn’t have much good to say!! We learned that Ryan will get his halo removed July 27th, if all goes well. When we get closer to that date, they will do x-rays and an MRI or CAT scan to see if the vertebrae have fussed together properly. If not, they will look at other options such as, leaving the Halo on longer or surgery!!! Wait and see!
We also learned that his release date is August 26th!! WHEW! After digesting the time frame, we started asking questions as to taking Ryan home on a ventilator and how all of that was going to work??? We also discovered that our insurance will only cover 100 (4 hr.) visits per year; so I asked, “What about the other 265 days”? We were then told that we would be trained on all the workings of the ventilator. I think that Pat, from Family Services, could tell I was stressed because not long after the meeting, actually within minutes, Lonnie the head of Respiratory came in and reassured us that we would be fully trained before we left and we would know more than the caregivers or therapists that we find in Farmington (that’s even more scary!). I asked him if it was possible to do the “Ambu” bagging and dial 911 at the same time!!!???
We also had another “Adaptive Transportation” class today to fine-tune the “prescription” for the type of vehicle that will be required for Ryan. Because of his height and having a ventilator on the back of his chair, he will have to have a full size van with both a lowered floor and a raised roof. Ryan is having a hard time with the “van” idea so he decided to “ditch” the class today. Meredith gave him a hard time! We also learned in our Family Conference that our insurance won’t help with the costs of a van or a hydraulic lift for Ryan; it seems these items are not medically necessary!!! I don’t know how long it will take us for Ryan to “drive” his wheelchair to Farmington!!! I was hoping that some of this was going to be easy, but I guess we are going to have to get in the “trenches” and work the system. Hopefully, Medicaid and/or Vocational Rehab will help with some of the costs.
Ryan also had his eyes checked today. He wore glasses for several years prior to the accident, but hasn’t been able to wear them since; mostly due to the halo. We were a little concerned that the injury may have caused some change in his sight, but we learned that he has 20/25 near sighted vision and 20/30 farsighted vision. The Doctor tweaked his glasses a little bit so he could wear them with his Halo. The Doc didn’t think that not wearing his glasses had much to do with his dizziness, but asked us to watch and see if we noticed a difference.
We didn’t learn anymore about why his blood pressure nosedives and then skyrockets in the Conference today. The Doctor said that it is related to the neurological system not knowing what to do. So we will just continue to watch it! Ryan was put on three more antibiotics tonight, one for staff infection, one for what the nurse called a “gut” infection, one for some infection in his lungs and we can’t remember what the other one was for!! And, we are going to take him home!!!
We do continue to pray for miracles. We know that the Lord will guide us thru this next month and the decisions that we are facing.
With love to all,
Dean, Terry and Ryan
Wednesday, July 06, 2005
Tuesday, July 05, 2005
Answers
Today was pretty quiet after the weekend!! Ryan is still having problems with his blood pressure and dizziness. He “black-out” again this afternoon. He was sitting in his chair in his room when his eyes dilated and he got that “glassy look!” Dean called for the nurses and they came running. It seems that his blood pressure drops very low and then skyrockets and he gets real dizzy. Today he said it felt like the room was spinning! They do not ever get here in time to take the blood pressure before it skyrockets so it is hard to tell how low it goes. There was quite a bit of discussion as to what the problem could be and no one can seem to figure it out. They are going to check for inner ear problems to see if that may be causing the dizziness and spinning. They tell us they will continue to watch it and see what happens!!!
There is a BYU-Provo student here. Seth Loughmiller was in a car accident in Spanish Fork Canyon and has a T4-T5 injury; leaving him a paraplegic. He and his wife Kierstie (sp) were married in February of this year; she is going to BYU Law School this fall and Seth wants to finish his degree in Biology. Seth is hoping to be back at school this fall. We have enjoyed getting to know them. Last night Seth was telling us that he had a class this morning at 8:00 a.m. We were talking about the difficulties of getting up and being somewhere at eight in the morning here at Craig when Seth commented, “I didn’t get to my class at 8:00 when I had legs!” We all had a good laugh!! It seems that the most of the patients here are blessed with such positive attitudes and great sense of humors.
We continue to see new patients come in every week. I saw the air ambulance nursing staff and the EMT who drove the ambulance when Ryan came in bring in another patient the other day. We made eye contact and said hello across the hall, but I wanted to tell him that he was not to come here anymore!!! It makes me sad, because we know that another family is devastated by the circumstances that bring them here. We were talking to a “new” family tonight that have lots of questions that no one can answer!! We tried to smile and tell them that it was going to be OK, but we didn’t have any answers either!! Pretty tough. One mother asked her son’s doctor if they could put 20 million songs on an I-Pod, why don’t they have more cures for spinal cord injuries. He told her that there are millions and millions of people willing to contribute for entertainment research, but with only approximately 15,000 spinal cord injuries a year, not enough contribute to medical research.
On the brighter side of things, we were able to go to the sixth-floor of the Swedish Hospital parking garage and watch the fireworks last night. We could see for miles in every direction. It was pretty awesome to see; some were quiet close and others seemed to be quiet far away, nonetheless, quite a sight. It didn’t compare to Farmington’s or the fireworks we saw in Silverton last year, only because we weren’t able to hear the patriotic songs which usually accompany the show. But, we were reminded of the great freedoms we do enjoy here in America. We are so grateful to those individuals who have served and/or died for the liberties we enjoy and most times take for granted.
We have our second Family Conference tomorrow. Having gone thru the first one, hopefully we won’t be so traumatized!! We hopefully will discuss the blood pressure issues and maybe get some answers!!
Thanks for your continue support and encouragement. We are SO BLESSED.
Dean, Terry and Ryan
There is a BYU-Provo student here. Seth Loughmiller was in a car accident in Spanish Fork Canyon and has a T4-T5 injury; leaving him a paraplegic. He and his wife Kierstie (sp) were married in February of this year; she is going to BYU Law School this fall and Seth wants to finish his degree in Biology. Seth is hoping to be back at school this fall. We have enjoyed getting to know them. Last night Seth was telling us that he had a class this morning at 8:00 a.m. We were talking about the difficulties of getting up and being somewhere at eight in the morning here at Craig when Seth commented, “I didn’t get to my class at 8:00 when I had legs!” We all had a good laugh!! It seems that the most of the patients here are blessed with such positive attitudes and great sense of humors.
We continue to see new patients come in every week. I saw the air ambulance nursing staff and the EMT who drove the ambulance when Ryan came in bring in another patient the other day. We made eye contact and said hello across the hall, but I wanted to tell him that he was not to come here anymore!!! It makes me sad, because we know that another family is devastated by the circumstances that bring them here. We were talking to a “new” family tonight that have lots of questions that no one can answer!! We tried to smile and tell them that it was going to be OK, but we didn’t have any answers either!! Pretty tough. One mother asked her son’s doctor if they could put 20 million songs on an I-Pod, why don’t they have more cures for spinal cord injuries. He told her that there are millions and millions of people willing to contribute for entertainment research, but with only approximately 15,000 spinal cord injuries a year, not enough contribute to medical research.
On the brighter side of things, we were able to go to the sixth-floor of the Swedish Hospital parking garage and watch the fireworks last night. We could see for miles in every direction. It was pretty awesome to see; some were quiet close and others seemed to be quiet far away, nonetheless, quite a sight. It didn’t compare to Farmington’s or the fireworks we saw in Silverton last year, only because we weren’t able to hear the patriotic songs which usually accompany the show. But, we were reminded of the great freedoms we do enjoy here in America. We are so grateful to those individuals who have served and/or died for the liberties we enjoy and most times take for granted.
We have our second Family Conference tomorrow. Having gone thru the first one, hopefully we won’t be so traumatized!! We hopefully will discuss the blood pressure issues and maybe get some answers!!
Thanks for your continue support and encouragement. We are SO BLESSED.
Dean, Terry and Ryan
Monday, July 04, 2005
A Great 4th of July Weekend
What a great weekend!!! We had lots of company and lots of fun!! We wore Ryan out -- but he said he had a great time. Friday we had our big outing; we went and saw Cinderella Man. By the way, it is a great movie -- nothing like the title! There were three patients all together; Scott, Tom and Ryan. All three have C1 or C2 injuries and are on ventilators. Scott, Tom and Ryan went on a bus, similar to an airline shuttle bus, it holds three to five wheelchairs and then up to 14 people. We weren't able to ride on the bus as there were too many staff members. It takes several more "hands" to care for patients on ventilators. Scott's son Kevin, his sister, her husband and their two year old boy, Jack, accompanied Scott. Dean and I, Geralyn and Keith, as well as Pam and Mom accompanied Ryan. I guess Tom has been here long enough that the staff has become his family! As we were loading Ryan onto the bus via the wheelchair lift he had a smile on his face and Jack looked up at Ryan and said, "Look mama, he is happy!!" Ryan has such a sweet spirit about him; even two year olds pick up on it! We first went to a park and had a picnic; the weather was great and Colorado has some beautiful blue skies. As we were sitting visiting and eating, Dean and Keith noticed that there was a girl’s fast pitch team warming up to play in the softball field nearby. Keith pointed out that the two pitchers were warming up with their coaches (which happened to be "older" men!!) as they sat on five gallon plastic buckets as catchers!! Keith commented, "Boy, now they have got the right idea!!"
Friday night we had a nice surprise! Dean went to the airport to pick up Meredith. On the way, Michelle told him that Lisa and Carli (Pam's daughter) would be coming in about a half hour after Meredith's flight! We had talked to Lisa earlier in the week and told her we didn't think it would be possible for her to come because we had just taken her to Rexburg the previous weekend. As you can imagine, she was feeling "left out" as all her siblings were going to be here and she was going to be all alone in Rexburg!! We decided that she could drive to Provo and visit Dean's family, if she could find someone to travel with her. She made arrangements to drive to Provo with Carli. When they came walking into Ryan's room, I thought they had driven from Rexburg to Denver! My mouth dropped to the floor as all the images of two "little" girls on the highways of Utah, Wyoming, and Colorado -- in an older car!! I was so glad to see her; but was quite relieved when I learned that an "airline-fairy" had arranged their flight to Denver!!!
As we have noted before, weekends are pretty low key here at Craig. Because of the Fourth of July celebration, a lot of family and friends came to see their loved ones. The halls were buzzing with excitement, as well as tears. Families and friends shared their love, support and concerns for the patients, their caregivers and families as we all try and sift through the challenges and decisions that have to be made. The Craig facility encourages families and friends to get involved and is quiet accommodating. We were able to reserve the "Digby Friendship Center," which is a large open kitchen/dining/family room area with a gas barbeque grill just outside of the room. We were able to gather and have a nice barbeque dinner while playing games, visiting, reminiscing and trying to figure out what to do next! Ryan enjoyed all the company, but again, it was another first. He doesn't like to be the center of attention, yet wants to be involved in all the activities -- what a challenge!!! We wore him out; he came back to the room and slept for three hours!! We were able to reserve the room again Sunday afternoon to watch a movie. We also ate (for some reason we can always figure out a way to have food!), played cards, and enjoyed each others company.
The days can't go without some "medical" interruption!! We learned that Ryan's potassium is low again. Ryan said, "I have eaten a banana everyday, I guess that is not enough!!" So, more pills! We also learned that he has an infection somewhere!! The laboratory work is being done now, but they started him on an antibiotic thru an IV which will take about seven to ten days! We keep hoping that things will "balance out" at some point.
After we visited Sunday night, it was time to say "goodbyes" as everyone will be traveling home Monday. Lots of tears, but we are so grateful for such a loving and supportive family.
After everyone left, Dean, Meredith and I talked and have concluded that this month may be the hardest month! We keep hearing "when you go home" and so we are going to have to make some tough hard decisions about home remodeling/selling/rebuilding, transportation, schooling, around-the-clock care, jobs, a communication system so we don't have to sleep with Ryan!, etc. etc. We all hope we are up to the task, some hours this is bigger than we are. We do recognize the Lord's hand in all things and know that He will "carry us thru" this ordeal. We thank you all and love you for your kindness and goodness.
Dean, Terry and Ryan
Friday night we had a nice surprise! Dean went to the airport to pick up Meredith. On the way, Michelle told him that Lisa and Carli (Pam's daughter) would be coming in about a half hour after Meredith's flight! We had talked to Lisa earlier in the week and told her we didn't think it would be possible for her to come because we had just taken her to Rexburg the previous weekend. As you can imagine, she was feeling "left out" as all her siblings were going to be here and she was going to be all alone in Rexburg!! We decided that she could drive to Provo and visit Dean's family, if she could find someone to travel with her. She made arrangements to drive to Provo with Carli. When they came walking into Ryan's room, I thought they had driven from Rexburg to Denver! My mouth dropped to the floor as all the images of two "little" girls on the highways of Utah, Wyoming, and Colorado -- in an older car!! I was so glad to see her; but was quite relieved when I learned that an "airline-fairy" had arranged their flight to Denver!!!
As we have noted before, weekends are pretty low key here at Craig. Because of the Fourth of July celebration, a lot of family and friends came to see their loved ones. The halls were buzzing with excitement, as well as tears. Families and friends shared their love, support and concerns for the patients, their caregivers and families as we all try and sift through the challenges and decisions that have to be made. The Craig facility encourages families and friends to get involved and is quiet accommodating. We were able to reserve the "Digby Friendship Center," which is a large open kitchen/dining/family room area with a gas barbeque grill just outside of the room. We were able to gather and have a nice barbeque dinner while playing games, visiting, reminiscing and trying to figure out what to do next! Ryan enjoyed all the company, but again, it was another first. He doesn't like to be the center of attention, yet wants to be involved in all the activities -- what a challenge!!! We wore him out; he came back to the room and slept for three hours!! We were able to reserve the room again Sunday afternoon to watch a movie. We also ate (for some reason we can always figure out a way to have food!), played cards, and enjoyed each others company.
The days can't go without some "medical" interruption!! We learned that Ryan's potassium is low again. Ryan said, "I have eaten a banana everyday, I guess that is not enough!!" So, more pills! We also learned that he has an infection somewhere!! The laboratory work is being done now, but they started him on an antibiotic thru an IV which will take about seven to ten days! We keep hoping that things will "balance out" at some point.
After we visited Sunday night, it was time to say "goodbyes" as everyone will be traveling home Monday. Lots of tears, but we are so grateful for such a loving and supportive family.
After everyone left, Dean, Meredith and I talked and have concluded that this month may be the hardest month! We keep hearing "when you go home" and so we are going to have to make some tough hard decisions about home remodeling/selling/rebuilding, transportation, schooling, around-the-clock care, jobs, a communication system so we don't have to sleep with Ryan!, etc. etc. We all hope we are up to the task, some hours this is bigger than we are. We do recognize the Lord's hand in all things and know that He will "carry us thru" this ordeal. We thank you all and love you for your kindness and goodness.
Dean, Terry and Ryan
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