A New Chapter

  Well it looks like we are done traveling for now. We thought we would be on the road for a few more years, but life happens.
   We haven't posted much about Rays health, but I will give the details now because it is a big part of all our decisions.
   In 2009 Ray had a biopsy of his lungs. He was diagnosed with silicosis a lung disease caused by breathing in tiny bits of silica, which was used in the foundry in the late 70's where he worked. It was removed from the plant in the 1980.
   Silicosis damages the lining of the lungs causing scarring and stiffens the lungs making it difficult to breath. This has been slowly happening to Rays lungs. He has been on oxygen since March 2017 after he was hospitalized. In April of 2017 he went to Mayo Clinic in Jacksonville FL to be evaluated for a lung transplant ( there is no cure for this disease). He went through some testing before Mayo denied him as a candidate for the transplant.
    He was doing pretty good (not counting his necrotizing fasciitis) staying healthy. Last Dec. he had a flare up and ended up in the hospital again. At this point he decided it was time for a new pulmonologist and another evaluation for a lung transplant at another hospital. So on April 15 he had his initial clinic visit with the lung transplant team at UF Health Shands in Gainesville FL. They said he looks to be a good candidate but it will be a little more difficult surgery than others.
     May 6th began a long week of testing. We stayed at Williston Crossing RV Resort about 20 miles from the hospital instead of staying at a hotel. He has been doing pulmonary rehab since April and has had all kinds of tests every week. On Sat. he was very short of breath and ended up in the hospital for a week. he has one more test and the team will take his case to get reviewed by the board to see if he can be listed for transplant.
   So, our lives have been on a roller coaster and in limbo at the same time. Not knowing how to plan for anything.

   We did make a big decision.... we bought a park model at Williston Crossing RV Resort. Yes we are back in a sticks and bricks. It's 2 bedroom, 2 bathrooms and the furniture was included. Ray already bought a golf cart. We moved in on Monday and it feels like we are staying in someones condo.

 

The resort is a gated 55+ community with 430 sites including the park models. In the winter months it will be full. There will be lots of people to meet and activities to do.

   We enjoyed staying on our daughter Mandy and son in law Pat's little farm. But we had made over 30 trips to Gainesville ( a hour and 20 min drive) and with the possibility of the transplant, we need to be closer. We still have our rv at their house so we can stay and visit them on some weekends and the holidays.

   Continuing on with 2018...

 *Aug.- Ray is down to one therapy appointment a week. But he is now seeing a heart doctor because of the pulmonary hypertension caused by the silicosis.
  We finally escaped from the heat and made a trip to WI. My brother Randy and his fiancé Lyn got married in June and were having a reception on the 25th.
  We stayed in WI for about 12 days. Very busy days catching up with family ad friends.
  *Sept- We had spent Labor Day weekend with my parents in WI. They are both in their upper eighties and live in their own home. About a week after we left and made it back to FL, my mom fell and broke her hip. So that brings us to...
  *Oct- We decided to go back to WI and help out. We stayed till the end of the month. The weather there was colder than normal and it even snowed.
  *Nov- Ray was finally done with therapy and the hand doctor said his hand was healed and he didn't need to see him anymore. Now to keep him out of trouble!
  *Dec- Friends from WI ( Rita & John) stopped for a quick visit on their way south.
 On the 13th our daughter Colleen, son in law Goyo and 2 grandsons (Lukas & Isaiah) met us and our daughter Amanda and husband Pat in Orlando. We had 4 days of fun planned. Two days at Sea World.
 Ray had a little bit of a cold before we left and he went to the doctor but there was nothing they could give him because he didn't have a temperature. He wanted to see the grandkids and not stay home. On the 3rd night there, he ended up getting a temp. The best thing was to go to the ER because of his breathing problems.
  This was the same ER he went to in Feb. One of the nurses and a doctor recognized him. They were glad he made it through all the surgeries.
  They ended up admitting him because of low oxygen and high heart rate. He ended up staying 3 nights. We told him he is longer allowed to go to Orlando!
 Christmas was a week later and the rest of the year was relaxing and quite.
       Who knows what 2019 will bring. We'll just roll with the flow and enjoy each day as much as we can.
 

 Well it's been awhile since we up dated. We ended the last blog with hoping to have a happier, healthier and more adventurous new year. The first month and a half went alright.
 * Feb.- We did some planning for another short camping trip by the gulf the end of the month. We were totally surprised by a visit towards the end of the month by friends from WI. Our daughter and son in law helped our friends, Jake and Dawn plan a trip to see us.
 We were surprised when they walked into the yard. They planned on staying a week with a short trip to Orlando for all of us.
 The first part of the week we relaxed, played cards and drove over to the beach. Wednesday we all went down to Orlando. We went to one of those escape rooms. None of us had done this before. You get a hour to try and figure out the clues to escape. Well, we almost escaped. We probably needed another half hour. It was a good time.
 For Thursday they planned a fishing trip for the guys and the girls Universal Studios. So the guys got up early and drove over to the Indian River area to meet up with their guide. Amanda, Dawn and I grabbed a uber and headed to Universal. I'm not one for roller coasters but I did go on the other rides.
  Later in the day we texted the guys to see how things were going. We got back a picture of a bandaged hand and a text saying explain later. It was clearly Rays hand and we thought he got hooked.
 We got back around 7 and got the details of the guys trip. Ray ended up getting finned by a saltwater catfish. It went through his little finger. He said he was fine up until midnight and his hand was swelling up and hurting. By 4 we ended up waking up Amanda and off we went to the ER. They checked him over, gave him some pain med and IV of antibiotics. We were sent back with a prescription for antibiotics and more pain med. They said he should get it rechecked in 24 hour if it wasn't better. As we were driving away from the hospital Rays portable oxygen machine quit working. He had his bigger unit at the hotel.
 At 9 I was on the phone trying to find out how to get some type of portable oxygen to make the 3 hour drive back home. Getting lots of run around, we're suppose to check out of the hotel and as the time went by Rays hand was looking worse.
 We ended up packing up and taking him back to the ER. The doctors came in, went out, came in and said they needed to air transport  him to the trauma center at ORMC he needs surgery right away.
 He ended up getting necrotizing fasciitis caused by vibrio vulnificus. Which is a known as a flesh eating bacteria and its fast moving. The doctors said they haven't seen a case in 5 years. The infectious disease doctors are writing up a medical paper on his case.
 He had surgery the first three days in the hospital. The first week he was fighting for his life. The next week he was doing better but he had a long way to go. They did more surgeries to clean out the wounds and make sure it hasn't spread. He had incursions from the back of his hand to his chest and also on the inside of his arm.
 He was in the hospital for 33 days and had a total of 8 surgeries. The last one was a skin graft to the back of his hand.
 All the time he was in the hospital I stayed at the Hubbard House next to the hospital. Our son and other daughter flew in from WI the day after he was admitted. Each of our three kids took a weeks turn staying with me. If it wasn't for the Hubbard House I don't know what we would of done.
   *April- Ray was back home a week and a half before Easter. My sister Pasty flew in from WI and spent Easter with us.
   We ended up going back to Orlando for the out patient skin graft surgery on April 6. By the end of the month I was driving him to therapy twice a week.
   *May continued with therapy twice a week. We were driving 45 minutes up to Valdosta GA to see a hand therapist. Appointments were scheduled so we could stop for lunch before or after. We also made a trip (3 hr) to Orlando to see the doctor. The appointment was early in the morning so we stayed the night before at the Hubbard House.
  Rays family wanted to come down and see him when he was in the hospital but we told them to wait until he was out. So his brother Russ, and sisters Darlene and Charlene came down for 4 days and were able to celebrate Rays birthday.
  At the end f the month we enjoyed a visit from our grandson Alex and his fiancé Emily.
  *June was the same as May, therapy twice a week and another trip to Orlando.
  *July- The weather has been warmer than usual in FL this summer. I think its been in the 90's since the beginning of May.
   Ray has been doing well with therapy. he wears a splint at night and a different one during the day. They help to pull and bend the fingers down to make a fist. Still doing therapy twice and switched to a new hand doctor in Gainesville. Shorter drive (1 hr 45 min).
  We had a great weekend mini vacation in Tarpon Springs. Did some site seeing, a boat ride and tried some Greek food.
   Well this was our exciting first half of the year. Sorry no pictures.