Anxiety

Mike and I traveled to the Valley Tuesday afternoon and spent the day there yesterday taking care of a number of matters we needed to address. TJei stayed with Jodie because she needed to be at swim team practices and she had art and singing classes Tuesday afternoon. Mia went down with us. She was so excited to see Uncle Quentin's new house, especially Jayden's new bedroom. It was even more lovely and larger than we had thought from the pictures. I so hope they are able to manage payments and other expenses. What an opportunity this is for them.

Mia stayed with Quentin to play with Jayden Wednesday while Mike and I went to meet up with Ron and Terry and visit while they were in Arizona from Oklahoma. What a nice visit it was! Much of our discussion centered on retirement matters. The subject has weighed heavily in our thoughts and hearts over recent months. Especially since Mike fought off such a devastating series of medical issues again. It has really given us cause to reflect on the future. It was wonderful to talk with them and spend that time together. Missing them bunches since they've moved to Oklahoma but even more as life has moved on and we don't do so many family things anymore. Sometimes the thought is there, it would be great to go back in time when both our families were young and again spend a day together at the lake or along a river. Mike and I want to go and visit inn Oklahoma later this year.

Mike had to go to the title company in north Scottsdale Wednesday afternoon to sign a stack of papers for the upcoming sales of properties in Lehi. There weren't any delays along the roadways so it didn't take much time to get that completed. We left there and headed to Mesa to meet Carol at a Chase Bank, Gilbert and McKellips, to open an account for the Children's Trust. Ugh. What a challenge that ended up being. Banks apparently will no longer open an account for a trust which requires two signatures. What? Yeah right....they will open an account for individuals which require two signatures and even a business account requiring two but not for a trust account. Unreal. Mike had to open the account to have routing numbers etc for the land sales proceeds so they went ahead and opened it. Big worry here. Carole has demonstrated over and over again that she is not trustworthy about anything to do with Scotty and Billie's estate. She acknowledged during conversations at the bank that she has been collecting fees from people using those lots as storage yards, etc. She previously had acknowledged she collected fees from the guy boarding horses next door to her. That particular lot sold last year, she would have been collecting those fees until then.

When Mike asked where those monies were at she stated they were in an account at this very Chase Bank branch. She said there was about $7000 there...oddly enough, that was the same figure she quoted was in the account she had - which Mike didn't know anything about - several years ago when she first acknowledged collecting fees for use of those properties. An earlier question by the bank employee had asked whether she had an account at that bank, she had stated then that she had a home equity line of credit loan. She hadn't mentioned this account at all.

It is so frustrating to have our hands tied for the sake of "getting along" while knowing with certainty she is not being honest and is actually failing to disclose and account for money that should be under hers and Mike's control, not hers alone and with no accounting for it at all.

After a quick stop at Panda Express - ran into nurse Kelly from Summit Healthcare (she was one of Mike's nurses :) ) and then we headed back out to San Tan Valley and visited with John, Kelly and girls before heading out to return home. It was so late when we left out! Mike pulled off at the camp area near Seneca and we slept in the car (Quentin's, we left our truck) for a couple hours. We didn't get home until a bit after 2am. whew

Healing

We're still in the middle of it but Mike is making progress and healing, slowly but surely. The picture is sepia tone because it isn't so harsh with the color removed. The light area at the top of the incision is a fatty tissue area on the inside of his abdomen. It has already mended from the inside, just needs to close up the remainder of the way on the external dermis area.

The tube laced through openings in the incision is part of the JP drain set-up. That tube snakes through parts of the intestine and is connected further down to a drain tube and a suction bulb. It's progress.

Progress & Set-Backs

Mike has been doing well and he is slowly gaining back his appetite. I think there was a real change in appetite once his sense of smell started to improve. He is eating, and enjoying, small meals now and even making occasional requests for certain foods. Mike currently weighs 192 pounds which would probably be terrific if a bit more of his weight was comprised of usable, toned, muscle mass. Alas, it does not. He has some work to go on building back muscle mass.

We walked around the block this morning. That's a start. :)

The surgeon called yesterday. A sample of the fluids still draining from Mike was sent for a culture when we visited his office last week. Results are in...Mike is on another round of antibiotics. There is a resistant staph bacteria brewing deep inside him which probably accounts for the acrid odor permeating from the open wounds in his abdomen.

Busy Morning

It is now 9:00 AM and already Mike has been to the hospital and had the PICC line removed. No problem whatsoever. The line came out without incident, although I did gasp again at just how much line was in there. Wow.  When we finished at the hospital we went through the drive-thru at McDonalds, Scottsdale Road and Thomas. Mike ordered a breakfast burro and an orange juice. We used the excuse that he would have missed breakfast here at the care center but both of us knew he really wanted something that tasted fresh(er). Not that the food here is bad, it just isn't quite what we'd normally eat. Their menu is far more suited for the elderly patients here, rather soft and bland.

After returning to the care center, Mike noted his PEG tube had come out about two inches. I rounded up a nurse to take a look at it. She said it didn't look to be a problem but went to get someone else to check on it, too. I held the tubes steady at Mike's abdomen while he turned to lay back in the bed. As his tummy tensed to make the move, the remainer of the tube pushed out. The nurses came in at that moment and said, "Good." They checked the end of the tube, looking to make sure it hadn't broken and wasn't discolored with blood or anything. It all checked out fine and they trashed it.

So now, the PEG tube also is removed. Hooray! The drain tubes will be removed over the next little bit, too.

Two different nurses, at different times, have said something about being discharged on Friday so we asked his nurse about it. She confirmed, Mike is scheduled to be released on Friday, tomorrow. We knew it was coming but what a surprise. We are so ready for this. :)

Final Dose

Mike is now receiving his final dose of Cipro. It has taken so long to get to this day but we are here!

Appointments

Mike has an appointment at Scottsdale Osborn Hospital tomorrow morning to have his PICC line removed.  That means tonight's IV's of antibiotics are the last scheduled. After 73 days of the most potent antibiotics known, and up to five different antibiotics being administered at the same time, Mike is finally going to be free of his IV tubes. Hooray!

He has an appointment with his surgeon, too. We just don't know specifics on that just yet, whether it will be at his office, at a hospital or whatever. They'll get started removing the tubes for the JP drains, gradually each day. The PEG tube (food) will need to be removed, too.

We are anxious to get this transition moving along.

Sour Candies

Candace, the nurse from Gilspar (insurance), suggested we try some lemon or other sour hard candies for Mike to nibble on for stimulating his taste buds...and hopefully able to taste and enjoy foods again. Everything tastes bland, and just generally tasteless, to him right now. Hats off to Lemonhead!

On another sour note, today is the 17th. We had been hopeful Mike would be released on the 18th. That isn't happening. His release date isn't too far off, just it isn't tomorrow. He'll be on both antibiotics through tomorrow and then the surgeon wants him to be watched for another couple days to make sure nothing odd happens, and to make sure no temperature increases are noted, before releasing him from the care center. So, a few more days. We're still on pins and needles with excitement. :)

Little Reminders

 

We are Verizon customers but this T-Mobile commercial caught Mike's attention this morninng, "My mom used to sing that song all the time," he said as the commercial ended. I  knew it was important to locate the video and record the memory...especially since today is also his mom's birthday.  What a special way for his heart to be touched with memories of his mom.

CT Scan

I can hear Mike shaving in the bathroom. It is such a basic thing but my heart dances knowing he is strong enough to stand that long and motivated enough to care about his appearance. Love this guy!

The blood clot in his arm has remained stable and has been slowly reducing in size and impact.  His arm is still swollen but nothing like it had been.

Mike will be getting a new CT scan today. This is the first step in trying to identify how and where pancreatic fluid is leaking into his abdomen. The next step will be consulting a gastroenterologist and Mike will be put under to have a scope inserted down to his pancreas for injecting dye to determine the source and severity of the leakage. Oh what fun. Not.

Visitors

It has been a beautiful day. We can see it out the window. :)

Mike has had several visitors today. We are grateful for that.

Dave and Joanie came by and visited this afternoon. Mike really enjoyed that visit, we both did. It has been a while, maybe last summer since we've seen Dave and Joanie. (Mike has seen Dave, forgot about that.) It is always good to visit with them. They brought a couple bean burros (much needed protein) for Mike, too! :)  Joanie is back to work at UPS after having carpal tunnel surgery. It took a long time for doctors to get her diagnosis right. She almost had more invasive neck surgery because that is what doctors thought was needed. We're so gad she's doing well.

Jacob came up and visited, Pepsi in hand :),  a few minutes while picking up their hair clippers. They brought the clippers last week and Mike has had a shave and haircut. Nice. I cut his hair and used the clippers to trim down the beard, he shaved the remaining beard. Jacob came up to the room, Maria was down in the car with the kids. I walked Jacob out so I could visit Daphne and Davis and say hi to Maria. Those little ones are so cute!

A short while after they left, Kelly arrived with the two girls! That was fun! Ashlee is walking!!! I didn't have my camera so no pics. :(  It is so cute to see her tiny little body bobbing along as she takes one step after another, now with purpose instead of just movement. Her hair has gotten so much lighter blonde, too! Kelly says she had dark hair, John did have dark hair when he was born. His turned blonde quickly but not as light as hers. Ashlee's is more like her Uncle Quentin's hair as a youngster. Maybe even lighter that his, too. Baylee just did a bunch of cuddling with Grandma. :) Made my day. She was hesitant about Grandpa for a while, he looked so different with the shave. It took her a bit to warm up to him but she did and was her usual loving self giving Grandpa hugs. :) It was a surprise to hear Kelly has had some health issues herself. Hopefully she'll get things balanced out in her system before long.

It was so good to visit with everyone today. I am so grateful to have little bits of time with sweet little grandchildren. I know Mike appreciates those moments, too. And he always enjoys time with special people. Our kids and their families and Dave and Joanie are all pretty special.

Bacterias

We got back the results of the cultures done on Mike's drain connections. There's a bit of good news and some bad news. The good news...no more MRSA! Hooray!!! That is seriously such good news. MRSA was not found in any of the four drain tubes. Mike has fought such a tremendous battle against this infection. He has even faced a couple life and death occassions during this illness.

I am so grateful for the prayers that have been offered in his behalf. I know that prayers are heard, I know prayers are answered. I know Mike has gained strength from the love and support offered through prayers. I am consumed with joy and gratitude that Heavenly Father has seen him safely through these struggles. There are still challenges for the future but one of the more severe challenges facing him at this time has been overcome.

One of the new struggles Mike will have is battling new bacterial infections. :( As the doctor said to Mike, "You've had some really unusual things growing in you."

Last week, drainage from Mike's tubes took on a nasty, foul odor and the look and consistency of the discharge changed. Everyone seemed to shrug it off, except me, of course. I really did want to know why things changed, what was going on in there. When one of the drains got a bloody discharge, I pushed a bit harder for answers. Cultures were taken of all four drains and the results have been a surprise. Mike has several new bacteria growing in him. ::(

Enterocacter cloacae - heavy growth
Pseudomonas aeruginosa - heavy growth
Gram negative bacilli - heavy growth
Staphylococcus species - scant growth
Klebsiella pneumoniae - heavy growth

Seriously! I looked up each of these and they're all so unusual...and exposure comes in a hospital setting! :( He's in the hospital.care center because of infections and getting more and more infections as he goes along. Each of the bacteria is opportunistic, moves in when someone is already in a weakened condition. And Mike has certainly been weakened over these weeks and months.

Fortunately, the doctor had already started Mike on an antibiotic, Cefapine, in anticipation of the final results (based on prelim results) so Mike has already started treatment effective against each of these bacteria.

Since one of the drains had blood in it...that means these bacteria have access to Mike's circulatory system. It is my prayer that the treatment will stop these bacteria and prevent them from gaining access to his blood system. It is my prayer that Mike will continue gaining strength and energy and will effectively fight off these new bacterias that have invaded his body.

Daily Progress

Each day brings new challenges and new accomplishments for Mike. He is getting stronger and stronger but still has so far to go. He is participating in physical and occupational therapy during the day but it wears him out to complete those sessions. Yesterday, he walked to an outdoor patio and sat in the open air for about 30 minutes. It is the first he's been outdoors other than the ride here from Show Low on 3/30. He misses being outdoors. Hopefully soon he will be able to spend more time outside.

Mike has enjoyed visits with each of the boys since being here. Quentin was here last Sunday and John and Jacob have each been here a couple times. John stayed the night with Mike a couple days ago when I made a trip up to St. Johns.

The days are long and slow. I know the pace bothers him but he still has such a long road to travel to get back in good health. The slow pace lets his body heal at its own rate. Mike is nearly off meds now, well off many of the meds. He still has the feed tube in his abdomen but isn't getting nourishment via the tube. He is able to eat anything his appetite allows and still is working on high protein foods. The feed tube is used for giving him especially distasteful meds and supplements, like syrupy proteins. Mike receives potassium each day. Those are huge old tablets but they dissolve very quickly. He tried swallowing one down at the start and it caused so much grief as it disintegrated in his upper throat. Too far down to cough up and not far enough down to avoid choking. Now, he puts the tablet in a bit of water and sucks it down using a straw once it's fully dissolved, usually just a minute or so.

Mike gets a shot in the abdomen each evening to prevent blood clots. He gets a medication to prevent stomach disorders from the meds and he gets the regimen of meds needed to keep his heart and circulation working as they should. He still receives Vancomycin by IV each morning.

It sounds like a lot, it really is just a bit when compared to all he had going on just a couple weeks ago. His coloring and contenance is so much better than it had been. He really is looking himself these days...especially if you forget the fact he's wearing a hospital gown! :)  He rests a lot but he's also holding up his head while sitting and walking more uprightly, and he's walking! That in itself is a huge step (no pun intended) forward.

Love my guy, love that he's getting better each day.

More Catching Up

There is still a lot of catching up to do in pictures and in journaling. The flowers were still looking pretty even on the last day of Mike's hospital stay. I love daisies so especially enjoyed their bright and sunny show of color during Mike's hospital stay. Many people commented on how pretty they were. :)

This is the disposable blood pressure cuff they used for Mike. With MRSA, much of the equipment and supplies used in Mike's room were disposable. This cuff caught my eye too because of the size. Would you ever in your life expected that an adult small anything would have fit Mike's upper arm? I sure wouldn't have.

This is all that pureed food. :) That's fish on the left and cole slaw in the bowl. Yuck! Mike didn't eat any of it. I don't blame him. Shudder, I had a hard time even looking at it. There was nothing at all appetizing about the meal.

It's nearly empty but this nourishment goes into Mike's small intestine each night, from 6pm to 6am.

Mike has been adjustng to the new surroundings. I have been, too. There is a chair in the corner of the room that unfolds to make a twin-size bed. I have spread a sheet on it (we brought some bedding) and use it to sleep on at night. Except last night. I went to Quentin's in STV and stayed the night. I did laundry and had a "Hollywood shower".I worried myself sick about Mike being alone, and he worried too about being alone, but we both got along well. Mike called me when I was just a short distance from the care center. He wanted me to bring him a breakfast burrito from McDonalds. Alright! He "wanted" something to eat. That's been a long time coming. He just wasn't up to whatever was being served here.

John stopped by on his way home from work. He was bearing gifts, too. A Pepsi for me and a protein bar for his dad. A-w-e-s-o-m-e!  It was good to visit with him. He stayed quite a while and "talked shop" with Mike. He may have even stayed longer except poor little Ashlee was sick and Kelly was taking her to see a doctor. She had actually been seen while John was here but he needed to get on home to help with his little family. Hope Ashlee gets better quickly.

Catching Up

Mia sent a water color picture for Grandpa. She made it at preschool and wouldn't let her mom have it. She said, "No, it's for Grandpa." He loved it Mia! Thank you sugar.

Woohoo! Mike made short order on this serving of meat. It is the *largest* meal he has eaten in a long, long time. 3/29

We were supposed to leave but the transport company didn't show up and then after agreeing Mike could just ride in ouR vehicle, theY realized he had a central line instead of a PICC line and told us we'd have to stay another night. It seemed as though we had taken up residence so I borrowed the idea from a sign Scotty and Billie had on their porch. A few people laughed. Mike and I enjoyed it. 3/29

TJei grabbed up my camera while I was on the phone. Jodie had gone in to see Mike for a minute, I was sitting in the vehicle with the girls. 3/29

It was a good idea, just didn't work out well. After eating so well last night, Mike decided to see if they had  breakfast burros. They did and he ordered one...but didn't eat much more than this. :(

After we left the hospital, we stopped for gas at Circle K. Oh my heck, these fuel prices are a killer. Mike saw a roadwork ahead sign warning of delays on 260 and instructed me to go through the Canyon instead of the Rim. The Rim might have been a bit closer but the Canyon was a pretty drive, too. 3/30

SNC

Skilled Nursing Center - That's how care centers are classified. Skilled nursing, or not. Scottsdale Heritage Center is a skilled nursing center. There is no denying it, when we first arrived and I came into this building to get instructions on how/where to bring Mike inside, my heart sank and I was overwhelmed with sadness at the sight of elderly patients, in all stages of consciousness and all stages of dress, lined up along a hallway wall. The sights, sounds, and smells is something I was not at all prepared for. I honestly had the thought, "Oh my stars. What are we (he, thereby me too) in for?" I wanted to cry and run all at the same time.

Mike woke up this morning and smiled at me. He asked, "When did you put that up?" pointing to the collage of the grandchildren. I told him I'd put it up late last night. He said, "Oh. I was just seeing in my mind that the pictures weren't there and was going to tell you to put them up. Then I opened my eyes and the pictures were there."

I felt really good that I'd put that up last night. :)

And how do you like this? I sure didn't!

What on earth??? Cost was never even discussed other than a generic, "it'll be expensive and I (the discharge consultant) don't think your insurance will pay it." That was the ONLY time cost was mentioned by anyone and that was at the start of the planning for him to come to the Valley. It seems they forgot all about an entire day of waiting for the transport service and when they didn't show, me asking if I couldn't just take him in our vehicle. The transport no show, the central line being "forgotten" and the need to stay an additional day so a PICC line could be put in the next morning had little to do with it...it all came down to me and expense. Talk about some cover your butt record keeping!

Here's some more of it, things that were listed in discharge diagnoses:

Diabetes? They said over and over again that he isn't diabetic. And, they didn't send any orders for diabetes testing or care. When I finally talked Cara, the nurse here, to test his blood sugar a bit ago, it was 106, just a bit elevated, no need for insulin or other intervention. What the heck? Where did this diabetes mellitus come from on the dischare diagnoses?

Acute renal failure??? Again, over and over again they said there was no issue with his kidney and yet they've identified acute renal failure as one of his diagnoses on discharge.

Mike was forgotten during the breakfast rush around here. At about 8:45am I stepped out of the room into the hall. The nurse asked how Mike liked his breakfast and I told her he might like it just fine if he could get some. People scurried on that one. They didn't realize he had been missed.

Mike got up from bed a bit ago and sat in a wheelchair. He wanted to go outdoors to a patio for some sun. The nurse said she'd have a portable oxygen bottle brought to him. After a while Mike asked me to just help him get back into bed. It was about 15 minutes later that someone came in all cheerful with a portable O2 tank. Oh well. It's here now if he gets a wild hair again. :)

So far, we haven't heard anything at all from physical therapy although we did manage to get out of a follow-up visit at Dr. DeLange's office in one week. Just wasn't going to haul him up the mountain and back for an office visit. ha! I've no idea how that got scheduled. Dr. DeLange had told us to see him after Mike gets out down here. That's more doable.

Family Support

Over and over again I am realizing how important it is for an alert, questioning  family member to be with someone through all phases of medical care. I woke up at 3:45 this morning and noticed Mike's IV pole was still sitting empty. His nutrition wasn't started until late last night. He had already gone to sleep, I was falling asleep. I expected the IVs would have started right after the feeding got going.

I picked up his water pitcher and emptied the warm water into the sink. I carried the pitcher into the hall and approached two aides sitting at a work station. I asked the nurse about his meds. "He isn't due for anything until 6:00am" she replied. I didn't recognize the name of the med she did say after that. I asked about the Vancomycin Hydrochloride, the powerful antibiotic he is supposed to be getting, and she replied there are no orders for that. What the heck?

Several minutes later an aide came into the room with the refilled water pitcher. "The nurse also asked me to let you know she was wrong on the med orders." Fine, but now it is anther 1-1/2 hours later and he still isn't getting the needed medication.

Update: 0525am Maybe she's a mindreader. Elizabeth, RN just started the Vanco

There Are Nurses Here

Finally, a nurse has come into the room...3-1/2 hours after we arrived a nurse finally came in to start Mike's assessment.

First Impression

This isn't looking good. We have been here, Mike actually in a bed because I got a wheelchair and wheeled him in, since a bit after 4:00pm. A nurse has flitted by a couple times saying she'd be right back but thus far, no one at all has been here to Mike's rrom until just a moment ago when someone came in with a tray of pureed food! What the heck???

Yes, a Yo-Yo

A friend questioned whether we feel like a yo-yo with all the changes being tossed our way on a regular basis. Yes, a yo-yo decribes well what it seems like. A nurse came in a short while ago carrying a clipboard and telling Mike, "I have insulin for you. Your blood glucose was 143 so I have four units of insulin." Are you sure? Mike's glucose was 162 this morning and they gave him four units of insulin then. Then, the pitter patter of little nursey's feet as she scampers over to the computer to check things again, "Oh, yeah, you're right. You did get four units."

Seriously.

But that wasn't the oddest thing of the morning.

Paula, RN also handed Mike a piece of paper and asked if she could get his signature saying it was a form that should have been done when he first came into the hospital...a permission to treat form! Oh my heck.

They have scheduled to take Mike for getting a PICC line at 8:00am. Paula will be removing his central line, not sure if that will be before Maybe after since they'd want to make sure he has a line. Sometime after he gets the PICC line we should be given a go ahead for leaving the hospital and starting the journey down the Beeline.

No Transport

Okay, I would seriously laugh if this weren't so serious. No transport today after all. He can't go with a central line, they have to do a PICC line in the morning.