June 2012

Happiness is a glorious sunrise :)

06/02/12- Fderdinanda Beach, Fl 
Bike Ride and Picnic
FL115>A1A>Ferdinanda Beach.

We're back :))

If you were wondering whether Sheila is feeling better or not I think this shot should answer your question. They delivered her new oxygen equipment (a liquid resevior and a portable unit - that's the portable on the table). So this morning we filled the portable for her and off she went for her morning walk. She returned all smiles and having done a mile. So we filed it again, made some peanut butter and jelly sandwiches and set off for a explore. We returned to Ferdinanda Beach, the spot we've ridden to a couple times before for a picnic,  but we took a new route this time since we're on the other side of town now. It was a nice ride over but the second half had a lot of lights and traffic. We can back the old way, but this time when we got the the ferry we just kept going to the I295 and then back around the loop to home.

Life is good and we're really thrilled to have honey back on her feet and able to get back to walking and riding and taking care of her day to day chores.
06/05/12 - Birthday Present
Shade Screen

Well it's not a diamond, ruby or sapphire but I'll bet this present brings a lot more happiness than a basket of jewels. It's turning to summer here and that means hot and an intense sun. The shade screen will give the honey, who enjoys sitting outside and reading, a place to do it in relative comfort. We may add an additional screen to this end of the patio as it gets the late afternoon sun and maybe a box fan to create a breeze on those still muggy days. It's not really bad out most of the time if you can stay out of the sun.

We'll also follow up this evening with dinner at PF Chang's, one of Sheila's favorite places to go out for dinner. We'll be heading out as soon as the oxygen guy gets here to deliver some more oxygen. We're getting a new system with a little more available (2 reseriors instead of one) and we'll see how that does.

Life is good - and we're going to just keep squeezing out all the happiness it has to offer. Take care and enjoy the NOW.
06/15/12 Walking

From a little under a mile two weeks ago to 2.2 miles today, Sheila is out there striding every morning. It's a great park to walk, 1/2 of it is paved and the other 1/2 is gravel and all of it is flat. The liquid oxygen is also helping a lot and the full flow versus the pulsed flow is really doing a better job of keeping her oxygen level up.

So here's Kenneth filling up the reserviors yes  somewhere in that cloud of oxygen vapor is one of our reserviors. Kenneth, our Lincare man is one in a million, he carries the bottles up and down the steps into the RV since his dolly won't fit through the opening to get in and out. We have plans to add a lift, we're looking at the Burr Handi Lift  which will solve that problem. We have roller pans the reserviors sit in so they roll around so with the lift we can roll it onto the lift, lower it down for filling and then raise it back up and roll it back in. We believe that will make this so we can get the oxygen filled anywhere (Lincare has offices throughout the country). So if we get free for awhile we're traveling again - even if it's just around here :))

Tomorrow the weather looks promising - may be time for a little ride and either pizza or a picnic, have to wait and see.
06/16/12 - Ferdinanda Beach, Fl
06/16/12 - Is it fall already? High of 82, mostly sunny, sure seemed like it and was a perfect day for a ride. We had to drop by the Harley dealer to pay for some parts I ordered, finishing up the chrome for the handle bars,  and figured we'd do that on our way to our favorite picnic spot. It also put us over on the other side of town to head for the beach, so we rode the ferry across again :))

After discovering the covered picnic tables a block down from our old bench, we opted for a little shade, it may be cooler but that sun is a scorcher if you're out in it without any shade or wind in your face :))  We had to fend off the locals but I let them know my peanut butter & jelly wasn't up for grabs. We sent them to a nearby unattended table and they seemed happy there.

We rode back a new way, trying our luck finding our way back over by the port and then through town and it's a pretty good way to go. Shorter than taking the freeway around and not crowded or full of lights. There was a round-about that offered a couple of wrong ways to go, but fortune smiled on us and I picked the right one. All in all it was a great day and we finished it off with the first half of a good BBC Mini-Series, "The Hour'. We'll do the other half tonight. Mayo again tomorrow as the adventure continues...... we'll see what we see and it'll be what it'll be :))
06/20/12 - Todays Promise - looks like a beautiful day :))
Promise for a beautiful day
06/18-06/20/12 - BACK TO THE MAYO but this time  it's a scheduled admittance. 

During her previous stay in the hospital they identified a bacteria, Mycobacterium abscessus, which is a hard to treat bacteria that acts like TB, but isn't TB. She has a bad infection in her left lung with this bacteria and possibly a lesser infection in her other lung. They do have a treatment for this but I think it's more a 'control it' treatment than a cure. The cure is to get rid of the bad lungs and replace them with healthy ones. Once that's done this bacteria won't have a home it likes any more and will die off with the treatment they're doing now. It's a 6 to 8 week treatment and then we test again to see if the drugs have gotten it under control. If they have then there's a very good probability that they will reactivate her (right now she's on the inactive list) and we'll be back to waiting for a new pair of lungs. If they can't get it under control they can't do the transplant. If they can control the bug they can turn off her immune system, treat her for this bacteria and eliminate it. If they can't control it, turning of her immune system would let it run rampant and it would kill her in short order. So she is scheduled to start the treatment tomorrow. 2 or 3 days in the hospital, they'll put a catheter in her arm so we can continue the treatment after she comes home. Two of the meds are IV and one is 3 times a day so we get the 'do it yourself' treatment package'. The meds are very potent, so it's back 3 times a week for blood test to be sure her system (kidneys mainly) are dealing with the meds ok. So we've got a busy 6 to 8 weeks coming up, but hopefully it'll pay off and she'll get back on the active list. I'll post follow ups as this process proceeds.
6/20/12 - Update
6/20/12 - Sheila Update -

Ok the PICC (Peripherially Inserted Cemtra; Catheter) is in and the new meds are started. She'll be at the Mayo for a couple of days while they monitor her response to the new meds (Imipenem & Cilastatin 500/500 & Amikacin 350mg) The links are included in case anyone (other than me) wants to know more about any of this. I always read up on whatever they're doing just so I understand what's going on, possible side effects to watch for, etc.

The PICC was a little hard getting in, it took several attempts, but in the end we both just concentrated on success and it seemed to smooth the path as it went in on that attempt. For those skeptics out there we have repeatedly seen how acceptance of what is and belief in what will be brings both the peace of acceptance and success for the process. Believe in a positive outcome and one will be achieved, but if you're a skeptic you believe in failure so failure is what you get. There's a real good article on this concept  at http://www.eckharttolle.com/newsletter/may-2011 - read the part about being stuck in the mud, it's the best example I've ever heard about the real meaning of "It is what it is." It's working for Sheila and I and everyone who treats her notices it. She's so peaceful, so in the moment, so alive :))
6/21/12 - Why you should get up early.....
Another Sunrise
6/21/12 - Sheila Update -

So far so good, she's tolerating the antibiotics and is feeling great. The plan has changed a little, the PICC she got yesterday after a minor travail will be coming out and they're going to put in a PORT and use that in place of the PICC. It has several advantages, it's more long term, the PICC has to be changed out every 6 weeks or so, the PORT can stay in for years if necessary, it's less prone to infections (a real concern at this point) and it's much more out of the way in day to day living. So they're set to do that a 7am tomorrow followed by releasing her tomorrow afternoon.

We are supposed to have a visit from the home care people after the procedure to go over how the home care will work and what we're to do. The instructions will pretty much stay the same, just the location of the link we use for her IV's will change. But the important part is she's coming home tomorrow, the rest is details.

And the sunrises here just keep blowing me away. The camera sort of gives you the idea, but it doesn't really do them justice. Sheila is also going to join the early circle roster as her every 8 hours will be 5am-1pm-9pm. The twice a day will be 6:30 or 7.
6/23/12 - IV time
IV Time
6/23/12 - Sheila's home :))) - crazy day yesterday, we finally got out of the hospital at 1pm, headed home and the Meds for her 2:30pm IV and the nurse were both supposed to show up at 2:30. Nurse didn't make it until 3: and the meds didn't get here until around 4:30 - nurse got here almost on time, but they forgot to tell her to look for the yellow hummer so she circled the park a couple times trying to find us. Courier service with the meds had a mis-communication and the driver stopped for another pickup on the way (was supposed to come straight here). The pharmacy service was very upset - I was also annoyed, but it's really great being able to be annoyed without being annoyed (but that's another story). We finially got everything done, got her 2 IV's taken care of, nurse got her life history and we're back in control of this again. We're working now on getting this happening on our scheduled times The nurse needs to do blood work around the 12 hour (before and after), so we're changing that one to 8am-8pm. The 3 times a day we're working towards our planned 5am-1pm-9pm. We should be on schedule by Monday.

Today we spent reorganizing the closet and getting our supplies we got yesterday off the kitched counter and put away. There are a LOT of supplies, so I cleared out the end of the closet and went pretty much floor to ceiling with plastic drawers As we got things organized I counted everything and figured out if the latest quantity/time agreed with what we were doing and discovered that the saline wash and the heparin lock (you put a little heparin in after each use to keep the port clear) were both under what I figured we needed. So put in a call to the nursing company to be sure we were doing things correctly and she confirmed we were following the right procedure. So Monday we'll call the pharmacy company again to get the supply issue resolved. Right now all this seems a little daunting but I think with a little time we'll get more comfortable with the process and it'll just become part of the daily routine. Till next time - be safe and be happy :)))