Moving

Ryan told me I needed to write, even though the “cloud” of despair is hovering over our lives. We keep hoping that things will get easier, but the refiner’s fire is still at work.

Thanks to new tretraplegic acquaintances, we are learning about the “little” things that make life a little bit easier. We learned about a Passy-Muir speaking valve which should allow Ryan to speak without pausing. Right now, he only has a voice when he exhales. When the vent exhales for him it allows air to pass by the vocal cords, giving him a voice. The Passy-Muir valve will be placed “in-line” in the vent circuitry, when the vent exhales, this valve with create a back-pressure forcing all of the air to pass thru the vocal cords, rather than most of it being pushed out through the circuitry. We hope that this will help Ryan with the Dragon Naturally Speaking software and while speaking on the phone, etc.

After I had heard about the valve, I got on the internet and read about it and learned as much as I could before our appointment to see an Ear, Nose, & Throat (ENT) specialist to learn more about the valve and to specifically to see if it would benefit Ryan. The ENT was familiar with the valve, but sent us to a Speech Pathologist (SP) for fine tuning and to see if the valve would actually be a benefit or just some additional equipment we would have to manage. The SP had used the valve on a couple of patients but not on a vent dependent person who required suctioning periodically. After almost an hour of discussion, she showed us a Shiley trach tube that we would need to use with the new valve. This new trach will be a benefit to Ryan since he doesn’t use the “cuff” anymore, it will be much easier to change out and painless – which is always a good thing. The SP recommended we use a fenestrated (hole in the tubing) trach tube and went into great detail as to why it was the best suited trach tube for Ryan. When the doctor took a breath, Ryan was able to ask how he would be suctioned with the hole in the tubing; “Won’t the suction catheter go down the back of the trachea rather than thru the tubing,” he asked? The doctor looked at him and then back at the trach tube and said, “I hadn’t even thought of that.” I pulled out a suction catheter from his suction bag and showed the doctor what he was talking about – sure enough, the catheter would have either gotten caught in the trach tube or been forced thru the hole and down the wall of the trachea. She was somewhat embarrassed and then told Ryan he was brilliant and very much on top of things. During the next hour of discussion she continued to thank Ryan for being so attentive to his care. After we left, we went to dinner and discussed our hope of being able to get thru this!!!

Since Dean lost his job and we no longer have private insurance, Ryan’s sole form of assistance is Medicaid. After the first of the year I had to notify the Medicaid office of the change and “WOW” what difficulties that has created. Ryan is on 12 to 15 different types of medication at any given time. Medicaid won’t approve five of the medications that he is currently on; they are requiring us to “trial” drugs from their approved listings. I am baffled as to how we can spend four months in rehab and close to 1M dollars and then have to start over, trialing medications. I asked the his doctor if there were side effects with the change in medications, which she agreed there may be some, how we are going to tell which drug it is, since we are looking at five different medications – she wasn’t sure what to think.

Ryan’s doctor called today and said that Medicaid didn’t approve her appeal for the blood pressure medication that Ryan has been on for eight months – the drug the doctors at Craig finally got right; which stopped or at least lessened the blacking out. Go figure!!

While all of this is going on, we have decided to move to the Provo/Orem area. We are hopeful that this will give us more medical resources as well as get Ryan back into school and more opportunities for social activities with kids his own age. Dean went to Provo the second week of January and I was up there last week starting the process of moving. We felt like missionaries out tracting – we had more doors slammed on us!!! It doesn’t look like the Medicaid benefits are going to be much better up there; in fact, we had one lady tell us, that we needed to “shop around” looking into other States benefits to see which one offered the best aid!! I tried to be polite as I told her that Medicaid wouldn’t dictate where we could live!!

Utah also has a waiver program, which allows for additional benefits above and beyond regular Medicaid. Their program also requires an individual to be in a care facility for 90 days, just as New Mexico, to establish a patients needs and show it would cost the State less monies to allow him/her to go into a home setting and have family do the bigger portion of the care. I didn’t think this was rocket science – but maybe it is.

While visiting with this same women, I asked her if that requirement could be waived as Ryan had been in a care facility for four months. She said, “If he is going to live for five or ten years, what is 90 days out of his life?” At that point, I almost came out of the chair!!! I realized we weren’t getting anywhere and tried very hard to keep my cool while thanking her for her time. Sadly, she was the eighth person I had been directed too, which supposedly was going to “help” us.

I had contacted a realtor prior to arriving in Provo to look for housing. Obviously we have special needs, so I felt it best to try and explain our situation before scheduling appointments that just wouldn’t work. I took pictures with me of Ryan in his chair, his bed, the hoyer lift, the shower chair, and his therapy table – pictures are truly worth a thousand words!!

The pictures helped a lot; however, we looked at five or six houses that had potential but would require some if not extensive remodeling to be readied for Ryan. After such a negative response from the State Health Department and then looking for housing and not finding the right one, I was ready to give up. Then we received a call from the realtor to look at one more house – Hooray, we found something!!! So the next step is to put all the puzzle pieces (a doctor, a hospital, Medicaid, home healthcare, packing, etc.) together and make the move.

Another one of our new tetraplegic friends, which I met while in Provo, told me, “this will be a fight everyday for the rest of your life.” He should know; he has been in a chair for 24 years. I keep reminding myself of President LeGrand Richards’ words, “Just pull up your boot straps and keep going”. We will press forward, with a prayer in our hearts that “all will be well.” Thanks so much for your continued love and support. So many have kept us in their prayers and called with very much needed advice and resource information. We love you all.

Love,

Dean, Terry and Ryan

Happy New Year

Happy New Year to all. We weren’t able to go to Gallup; Ryan didn’t get past what ever it was that made him sick until Wednesday. It is difficult at best to try and diagnose the ailment, being that he can’t tell us where it hurts. Tristen had a stomach flu bug for several days and didn’t feel good at all and Dean and I had head and chest congestion so we think it was one or the other – gratefully he got to feeling better without ending up in the hospital. Our doctor was out of town, but her aide was so good to stay in touch with us to make sure we didn’t go past the “critical” mark.

We were going to have a “little” party New Years Eve to bring in the New Year – but, Ryan got that excruciating pain that comes on so quickly. He tells us that the pain comes on so fast he isn’t able to let us know and get pain medication down to ease it. Luckily this time it only lasted about two hours before he was able to fall asleep. He did watch the New Year’s Eve, Times Square ball drop and then turned and looked at me and said, “Happy New Year” in a somewhat discouraging tone!

It seems that reality is settling in. With all the Christmas festivities going on around us we were able to set aside some of the major decisions that we need to make; but, that time has come. I have been visiting with a couple of people regarding transferring Ryan’s durable medical equipment (DME) (ventilators, nebulizers, suctioning equipment, etc.) and I am learning that it is not going to be real easy, especially since we no longer have any health insurance. Ryan’s sole medical coverage will be Medicaid now and the benefits can differ greatly from State to State. I think we are going to have to find a provider where ever we go and then have the new equipment shipped here and then we will move it!!

Friday we received word that the Disabled and Elderly Waiver application which we have been working on since July was approved by the State of NM. I don’t know what we will have to go thru in the State we choose to go to; I sincerely hope that the applications for the D&E Waiver, Medicaid, and Social Security Disability Income will all just transfer over to their respective programs.

We were in the process of registering Ryan for a couple of college classes at Highlands University; Highlands has an extension office at the community college here in Farmington. We will put that on hold until we decide where our new home will be.

Ryan got a fish tank for Christmas. We sat it up on his dresser; it has been fun to watch God’s creations. We brought five fish home; one of them died, but a couple days later we saw two new little teeny tiny fish. We “scout-out” the fish every night before Ryan goes to bed; we haven’t seen the two new little ones – with a bit of luck they are hiding in the plants. We are hoping they didn’t get eaten!!

We hope that this New Year will bring some peace and tranquility to our lives – actually the fish help somewhat with that!! We are grateful for the many blessings we have and look forward to this New Year and pray that the Lord will inspire us and help us with the many decisions we get to make. We are so grateful to the many many friends and family who have been so kind and loving. May the Lord bless each of you in this New Year.