Sorry for the long wait between updates. I had tons of help yesterday and completely finished moving. It was exhausting working nights the whole week and trying to pack. Lots of people from church and friends helped me finish packing and moving most of our stuff into storage and the rest to my apartment. Britney has been doing so good. She looks at the TV whenever a movie is put on. We got her the planet earth DVD's and she watches them with Jonas and Vera whenever they come. She looks at people when they are talking to her and continues to make a lot of sounds. Our family friend that has been giving her massages set up a rotation with a bunch of her friends to Britney will have massages almost every day. She has loosened up a lot and has had so so much less pain. Her baclofen dose was also increased a few days ago so she has been more sleepy. She finally got her correct splints on Friday. She did really well with them. Her OT didn't want to leave her in them all weekend without any therapy because she thought it might be too much for Britney to have them on non stop for so long and didn't want her skin to break down. Everyone continues to do lots of range of motion. If the splints and Baclofen increase dont get her arms and hands straight she may get botox injections in her forearm muscles soon. She went to St. Anthony's for a MRI a few days ago. Casey went with her. She turned her head and looked at all the trees and the sky. She was very peaceful during the whole ride Casey said like she enjoyed being outside. The results from the MRI aren't back yet. She will have a EEG soon also. Thank you for all your support.
John

Sorry I haven't posted in a few days. I came back to Tucson Monday morning and I have been working graveyard shifts and trying to pack up my house. I found a 1 bedroom apartment to rent that will let me stay in the same congregation and that is a lot closer to the hospital. Thank you to all of you who have offered to have me stay with you. I figured I would be working and sleeping all hours of the day and it would be better this way. I really appreciate all your help. Britney continues to loosen up and stretch out. She got some wrist braces but they were the wrong size. This continues to be very very frustrating. Hopefully she will get the braces she needs soon to help her keep all of her range of motion. She is still more and more responsive. I'll post again soon. And Britney's sister or parents may post more soon.
John

Lots of progress and a visit from TMC friends

Sorry I didn't post yesterday I had a long busy day spending time with our kids and Britney. Britney made a lot of noises yesterday but no words yet. She had the valve on for about 4 hours the last few days in the afternoons. She did great with it. It makes her work a lot harder to breathe so she has to build up to having it more and more. She has been blinking to communicate with her therapists and nurses the past few days more and more. She has been moving her legs a lot and has a lot of sensation in both feet. We can tell from her face and reactions when we massage them or stretch them. This morning she smiled at a joke her Aunt Jan told her. She smiled for a whole minute after really wide. She has been looking at us a lot and looking at her hands and feet when we stretch her out. She is really comfortable today after a massage from a family friend last night. We had a great surprise this morning one of the nurses from TMC ICU came and brought a card and presents for all the kids and Britney from the whole ICU team there. She was visiting a friend for a wedding and found out where Britney is. It was the nicest surprise and made our day. Thank you to all the people in the ICU at TMC who saved her life in those first few days to give her a chance at recovering, and for following the blog so closely and for all your prayers and support.

Passed swallow eval now has valve to talk

Brintey did great again with her swallow evaluation and has had the cuff down on her trach so I asked if she could have a valve to give her the chance to start speaking and she just got it. She has seemed like she tried to talk many times over the past few weeks. Her speech therapist said it is common to make some sounds first and then maybe one word sentences. She has already made a lot of sounds since getting it in. She has some gauze n her lower lip that makes hit hard for her to move her lips because her lip is still healing. Her vocal muscles need some exercise and it will take lots of brain coordination to speak more complexly. It will be a process, but we are very excited she is progressing so much. She has been looking around a lot, and smiled again today when we were talking about the kids. She closed her eyes when her therapist asked her to. She has therapy 3X per day (speech, occupational, and physical therapy). The rep from the splinting company came today. Her braces in Tucson got sent back to the home office because they didn't have the right address to ship them to so we lost another week and a half and she has lost some more range of motion in her left arm. She will be getting custom braces on Tuesday or Wednesday. Sorry I haven't posted everyday. I just wanted to keep everyone up to date on any changes and didn't want to bore anyone with more of the same. She has been very comfortable with some periods where her spasms are increasing causing bad pain. These periods are getting less frequent and she is comfortable most of the time. Her nurses are very good at controlling her pain, and we are doing a lot of heat packs and massage. The constant stretches in therapy also keeps her pain down. I'll post again with any changes.
John

Listening more

Britney has been showing us she is hearing more and more. Last night on two separate occasions when her nurse told her that she had to poke her finger and give her a heparin shot before the nurse did it she frowned. She has been looking around a lot, and our voices help calm her down. When I told her this morning I brought the baby she opened her eyes wide. Her occupational therapy is going really well and her arms are getting more straight. We are still waiting on splints being shipped from Tucson. Hopefully they will be here soon. Also she is only on 2 liters of oxygen and her lungs sound great.

Very comfortable here

Britney is very comfortable here. I swear she knows she is around family and friends who will be there for her constantly. I have seen a dramatic difference in how calm she is here. She got some IV fluids last night and has been very restful. Her myoclonic jerks are happening less. Her neurologist is pleased with some improvement over the weekend. She will be getting a MRI soon. She had a great session with her speech therapist this morning and was able to swallow some foods. She has to be able to pass a swallow eval before she can get a valve for her trach that will allow her to speak. She has had so many visitors. We are so happy how many family and friends have already come and who have said they would come when we are settled. Thank you all of you for being so kind to us in all the ways you have helped wether it was time with Britney, our kids, talking to us, donating food, money. It has been amazing to see the outpouring of love from everyone around us. Thank you.
John

Britney's care is so incredible here. Her physical therapist got her into a chair and took her into the lobby so she could see and hear the rain. Everyone here is very kind and willing to include us in all of her care. They are very very thorough for every minor detail and have impressed us greatly. We feel very comfortable with her there. She has a big window in her room with a giant tree outside that has squirrels in it. She looks out the window a lot. The kids are adjusting well. We are getting them situated at Britney's parents house and got Jonas registered for school yesterday. Britney has ton's of visitors all the time. Her best friend from High School Becca was planning on coming to Tucson in a week to visit but happened to arrive in Denver the same day as Britney to see family and friends. She spent a few hours the last 2 days with Britney and brought a bunch of pictures and put them on Britney's wall.

Special prayer today

I found out from Mary Lee the the actual prayer with the 12 apostles of our church is today on their regular Thursday meeting day. She found out about it Sunday and thought it was that day but posted a comment a few days ago that it is actually today. Britney had a very comfortable night. This morning Dr. Weintraub one of the directors of Craig Hospital neurorehab came by to see Britney and had a ton of great ideas. He and the speech therapist and occupational therapist at Kindred in Denver rounded together and were very encouraged by her progress and and said that they will change around her medications to keep her less sedated with narcotics and baclofen and will look into getting her some injections. Her OT did some great range of motion and is working on some splints. She said that Britney will likely not have any permnant contractures with agressive treatment. They will get a MRI today. A neurlogist who works closely with Kindred here and Craig hospital will be coming in a few days. He is getting over a sinus infection and didn't want to get anyone sick. Britney's aunt Jan talked to her a lot yesterday when she was telling her how great it would be to have so much family coming and taking care of her and she smiled. She has been very awake this morning and has looked at us when we talk to her a lot. When my mom told her about the apostles of our church praying for her she cried and had a tear roll down her cheek. Her eyes were dry before she heard this.

Trip went smoothly, hospital is incredible

This is the 1st internet I have gotten a chance to post. The trip went very smoothly. Britney was kept very comfortable. We found out we were landing at the airport in Denver where Casey's (Britney's dad) firestation takes care of this morning. Casey talked to the flight coordinator and arranged for his station's paramedics to transport Britney from the airport in Denver to the hospital. It just happened to be the day his team was on. When we landed at the airport there were more than a dozen firefighters and their 2 medics waiting for us. It was like coming home to family. Britney's dad has been at that station over 20 years and she grew up at the fire station and Jonas had his last birthday party there. They have been incredible in raising money to keep family coming to Tucson to help out these past 8 weeks. I can't even describe the emotion I had or the emotion that was on all of their faces when we landed. I will never never forget that moment and I'm sure none of them will either. Thank you thank you.

When we got to the hospital Britney's Aunt Jan and my Mom were waiting there. Just as much emotion as at the airport. Jan has been talking to Britney on speaker phone most nights and posting comments on the blog. Britney has responded to her so much in the past and I'm sure she will continue to help Britney come back. My nephew Dante was climbing in the room and Britney turned her head and eyes and looked at him. Britney's hospital is amazing. We feel like her care is phenomenal. We met with everyone from almost every group already PT, OT, Speech, Dr. Yager the medical director and critical care Dr, and many of the case workers, nurses, etc. There is an outstanding neurologist who has known she is coming who will meet her tomorrow and one of the PM&R Dr.'s from Craig will meet her in the next few days. She will be put on the waiting list for Craig right away and a plan to get her to Craig is in the works. We feel very very peaceful about our decision to bring her here. Talk to everyone soon.
John

Please help if you can with transport costs

We are very happy she is going to get the best care for her situation in Denver. The air transport will leave here tomorrow morning. Unfortunately our insurance will not cover transport costs but the care in Denver is approved. The flight will be $11,700. We have about $5000 now and our family has said they would help get to get Britney the rehab care she deserves. If you can help out even a small amount it would be greatly appreciated. I was able to get out of our lease so I will be moving out by the end of the month and will be able to save some money. Carlie put up a post on July 15th about how to donate to Britney's trust fund. I know it was the right decision. Craig Hospital is the best Neuro rehab anywhere I believe and will all of the family and extended family and friends support in Denver it will be the best place for her and our kids. Thank you again for all of your help in every way. Britney has responded a lot more lately. She has so much emotion on her face. She has smiled (when we have talked about the kids), she has cried (when in pain). When I ask her if I can stretch out her muscles she relaxes and lets me. If I forget to ask she tightens down until I ask. She has opened her mouth when we ask her to. Yesterday she turned her eyes and watched TV when Casey turned it on. Britney has been off the ventilator just on oxygen for about 60 hours now and has had 100% o2 saturations!!!!! She had a really really hard night last night and a very painful day but is finally sleeping for the last few hours. I think she will have a good night and get the rest she needs for tomorrow. I'm sure she will get phenomenal care in Denver and we feel at peace about this decision even though it was the hardest one we have ever made.
John

Britney going to Denver for Rehab

Hi everyone,
This has been in the works since Thursday afternoon. Britney will not get the rehabilitation care she needs in Tucson. We were told this by multiple people, and by the rehabilitation doctor who came Saturday. Dr. Toiber suggested that we should look into Barrows in phoenix which would be harder for our family. After much discussion and looking into places we found an acute care hospital in Denver that has PM&R doctors from Craig hospital who come there everyday. It is a kindred hospital but they have a much higher level of care there than in Tucson. They have 24/7 Critical care on site, intensive rehabilitation. They prepare all of their patients to meet criteria for Craig hospital. My dad visited it on Saturday and was very very impressed with the atmosphere the concern and human touch. They are the best place in the country to get her ready to go to Craig. Their Medical director Eric Yager did his pulmonary critical care fellowship in Tucson and my program director knows him. We feel very very good about this decision. Our insurance has approved for her to come to Denver and there is a good chance the insurance will pay for the transport. All the details are being worked out now. Hopefully she will fly to Denver this week. We will let you know when we find out when she will be going.

How this affects our family.

Everyone has asked this. All of the kids will go to Denver to be with family and Jonas will go to school with the same teacher Britney in Littleton. Britney's parents Casey and Jana will drive the kids up with their stuff. My parents and Britney's parents live 15 minutes away from eachother. Both the kids and Britney will have increadible amount of support and care in denver. We have tons of extended family there and many many friends. I have no doubt it will be better for them. I will go with her to get them settled and be back there for my vacation in 4 weeks from today. I do not qualify for family medical leave because I haven't worked at UMC for a 12 months. I will be able to visit on days off and as needed take elective time. It is a very hard situation but we have prayed about it a lot and feel a huge peace about it. I need to keep up with residency #1 to keep Britney having the insurance she needs to get the best care there is, and #2 to make a future for our family and our future. This situation will be sustainable long term. We are getting out of our lease and I will stay with friends in Tucson until we get a time frame worked out. This way we will be able to save the money we need for me to fly back and forth.

Special prayer today

Britney had a very painful night last night. We just got a call from Mary Lee Call who is in our ward. Her father is Elder Scott who is one of the 12 apostles in our church. She shared with him Britney's story and he was very touched. Mary Lee called us about an hour ago and told us that the quorm of the 12 apostles are having a prayer session right now for Britney and a some other people. We are fasting today for Britney to be able to get all the care especially the rehab care she needs. Thank you for all of your thoughtfulness and prayers.
John

Britney slept pretty good last night. Today we worked with her a lot and got her arms a lot straighter so she was pretty sore by the end of the day. The baclofen she has been getting has made her more sleepy. The PM&R doctor came by today and was very helpful. I'll write more tomorrow and monday. We need to catch up on sleep. Thank you for all of your emails and comments for Britney.

Britney's dad spent last night at the hospital and moved her joints a couple of times every hour. She was much more relaxed this morning and I spent most of the day with Britney and kept heat packs on her and massaged her, and stretched her legs and arms. Her right arm I have got back to normal, and her left arm a lot straighter. She is in less pain. I also stretched her neck. She is sleeping very comfortably tonight. The physical medicine Dr. still didn't show up today which is very frustrating. She is tolerating her G-tube feedings well, and has turned a big corner. Thank you for all of the comments and emails. I read to her all of these today also.
John

more pain today

It's frustrating without good therapy. Britney was in a lot more pain today. I bought her a bunch of heat packs and some icy hot and gave her some good massages. She loosened up during the day but had more pain in the afternoon and was just as contracted as she was when I started this morning. A physical medicine/rehab doctor was going to come today but didn't. Hopefully he will come tomorrow. They have very few in Tucson. Hopefully he can offer something to help her loosen up and be in less pain. In Wisconsin our PM&R docs did a lot of injections to loosen up muscles. She is still having trouble tolerating her G-tube feedings but is making progress. She hasn't had a fever in a few days. The next big thing we have to get her over is to help her get rid of her contractures and pain from her muscles. For all of you who want to write something to britney but haven't been able to post on the blog you can sent me an email at winklerj87@yahoo.com and I will read it to her. Several of her friends and family have done this and she has listened to the letters and looked at us while we read to her. Thanks for your continuing support and love.
John

Britney had a really good day. She was kept very comfortable with heat packs, muscle relaxers and pain meds. She still woke up when we talked to her. DeeDee her cousin spent the night with her and talked to her a lot of the night and did her hair. She calmed down whenever she talked to her, and even cried when DeeDee talked about Britney's kids and DeeDee's kids. Her and DeeDee grew up like sisters. She went home last night back to her family. Thanks for coming. It means the world to us and to her.

More comfortable

Dr. Smith had a brilliant idea yesterday. Britney's pain was still bad and she figured out it was from her tight muscles and put her on muscle relaxers. She has been very peaceful. She is really tight in her arms and neck and has developed some flexion contractures over the last few days. She had heat put on them and I stretched her muscles and gave her a few good massages. It helped a lot but she is still in a lot of pain in her neck and arm. She has a urinary tract infection she is being treated for. The official report of the CT showes that her lungs are better and no pneumonia, or bowel infection. The phyical therapists at UMC don't want to work with her because they say they don't just do range of motion. We are working on it ourselves. It is very frustrating, hopefully we will get some good therapy and she will follow commands more and more so they will be willing to work with her. We have been reading to her a lot and she has been looking at us while we read. We read her all of your comments you post and she is very relaxed while we read them to her.

Doing better but blood counts low

Britney is doing better at UMC. Her pain is easier to control and she doesn't have a fever anymore. The CT scan showed that she had a lot of air in her colon and intestines. No infection they saw in her belly. Her left lung has a lot of scar tissue and collapsed lung. I'm not sure if there was a small pneumonia there also. She was really dehydrated from not having anything to eat for a few days before she was put on TPN (food through and IV), and it took a lot of fluid to catch her up since she got back to UMC. Her kidneys are fine now she has had a lot of fluids to catch up. She is on antibiotics right now. She has been very awake and moving a lot. More when she is in pain.

back at UMC for fevers and belly pain

Britney had more and more abdominal pain yesterday and today and has had a fever since last night so she was transferred back to UMC. She just didn't seem like her pain medication was working more than 15 minutes since early this morning, and I told the Dr. at Kindred that I wanted her back at UMC and he agreed. She came back by ambulance, and is comfortable back in the cardiac ICU at UMC. They are taking blood cultures and doing a CT scan of her chest, abdomen and pelvis soon after they give her contrast. Hopefully we will know soon what is causing her pain and fevers. I'll let you know when I find out.
John