Wednesday, March 23, 2016

Making Travel Plans in the Little RV

Rob is going on three weeks with no dialysis. Yay! Since it seems we have been given a reprieve we have decided to plan a trip for Fall and Winter. 

Some of our family and friends don't understand why we would want to leave the safety of our doctors, medical plan and familiar surroundings. It's hard to explain but sitting here, inside with the same old view day after day is just depressing. We are on wheels so why not do what we can to enjoy life so we'll carefully uproot ourselves and make the best of things.

Of course we plan to go and visit family on the East Coast.  In our previous travels we never made it the the Florida Keys but really wanted to see them. 

We have this lot leased through August so if we leave on September 1st, it gives us two months to make it to our first reservation in Marathon, Florida on November 1st. We will be spending the entire Month in an RV site ON the very edge of the Gulf of Mexico. This is the site we have reserved. I'm so ready to go now. 

On December 1st we'll move to the West Palm Beach area and spend Christmas with Rob's mom, sister, brother and their families. On January 1st we'll head for the West Coast of Florida and spend a month in Bonita Springs. That is near Sanibel and Captiva Islands where I fell in love with shelling and I can't wait to go there again. 
I'm also pretty excited to take Murphy to the beach. I think he'll love it. 

Lest you think we have forgotten about Rob's tenuous medical condition and are throwing caution to the winds. We have an emergency back-up plan just in case. I purchased a membership in a plan that airlifts critically ill patients to the hospital of our choice. 

You get one airlift per year and there are no pre-exisiting exclusions if you are under age 75, and no cost or distance limits. Knowing if something happens I can get him transported back home to his regular doctors and healthcare is very comforting. 

The rest of the trip is completely up in the air. We have a lot of planning to do but that's a big part of the fun. Of course anything could happen over the next 5 months but we're hoping for the best. 

Saturday, March 12, 2016

Miracles do Happen In the Little RV

Last time I posted I wrote about our visit with Rob's kidney doctor and how he told us Rob may be able to get off dialysis. 

Today is day 8 with no dialysis.  Rob's been in for lab tests every day and we are carefully checking his weight daily to make sure he is not hanging on to any fluids. It's a balancing act between diet, medication, and very careful monitoring. We don't want puffy! Puffy is a very bad thing.

We go back in for more lab testing on Monday and unless something goes terribly wrong, he'll be done with dialysis for now. Rob's kidneys are currently functioning at between 20 and 25% which is enough if you're careful. 

Hopefully, once we get the all clear, he can have the dialysis port removed from his chest and can take a full shower. I'm sure he'll appreciate that. 

Murph and I have been keeping busy chauffeuring daddy and walking and walking and collecting sticks. 

And, just because I can, here's a photo of our newest Grandson, River who is about 6 weeks old now. 

Saturday, March 5, 2016

Home Again to the Little RV

Daddy's Home!
Rob came home from the nursing facility on Thursday. Murphy is his shadow. I had no idea how much he was missing Rob until he got home.  

Rob is doing better. He's getting around fairly well and will continue to have Physical and Occupational Therapy here at home for a short period of time. 

We saw Rob's kidney doctor about 8 days ago. He has reviewed the labs and progress notes and ordered more lab tests, (of course).  He feels there is a good chance Rob might be able to come off dialysis. We were stunned, but in a good way. Rob still has some kidney function and he is making a fair amount of urine. The question is whether his kidneys are filtering out enough of the toxins to keep him stable without dialysis. So, for now we wait and hope and go to dialysis every Monday, Wednesday and Friday from 5 PM to 9 PM.

I won't sugar coat it, dialysis is rough. The atmosphere at the center is sad, not because of the staff but the circumstances and the patients. Physically makes Rob really cold, weak and nauseated.

We had quite a wind storm here in the park the other day. I was gone during most of the strongest winds but when I came home there was a very large tree branch where I park my car. How's that for a stroke of luck?

My Dad does a lot of woodworking and makes some amazing things. He recently made me a yarn bowl. I think it's gorgeous! Now my yarn will stay put!

I got myself a new gadget the other day. If you spend any time in an RV you know space is at a premium. Especially counter space. Whenever I need to use my stove I lose 2 1/2 linear feet of counter space. That leaves me with about a 1' wide by 2' deep space for the rest of my cooking. 
This beauty is an induction burner and an 8 quart stainless pot. I replaced my slow cooker and fry pan and it fits where I used to keep them, in the oven. It doesn't put out a lot of heat, has a much smaller footprint, and is much more precise. I can even cook outside with it. 

Speaking of cooking, the dialysis diet is a whole new world. We are used to low carbohydrate, low sodium living. Now we are learning to avoid potassium and phosphorous. So many of the things we thought were good choices aren't any more. The dialysis center is a great resource for information and they have given us numerous handouts and guides. It's just a matter of learning what to avoid at this point. 

A couple of days ago I noticed the cherry trees are in bloom and the daffodils are coming right along too. Spring is almost here!