Thursday, February 28, 2008

Great blog entries

I tend to write my best stuff when I’m no where near a computer or paper/pen. Then when I do sit down to write I don’t remember what I was going to say. I think my hands have “Alzheimer’s” because they can’t remember what they’re supposed to be typing.

I guess I should carry a notebook with me all the time so I can jot things down. I know I talk in my sleep but I'm not sure how writing in my sleep would work out.

Improvements in the “Tuh”

When Ron had his left foot surgery in 2006 we jokingly called it his “foo” (pronounced like “foot” but leave off the “t”) since he was missing the toe and arch portions of his foot. His right foot we referred to as his “tuh” since it included everything. So, now his “tuh” is slowly improving and the foot specialist was pretty pleased that it seems to be making progress. Dr. Heady had to just remove a tiny bit of tissue from the margin and that was it.

People have gotten a good laugh at us for calling his feet foo and tuh but it really helps keep our sanity and if you can’t laugh at a situation there aren’t too many other options. Humor is always best. Plus, it puts everyone else at ease.

Now when he says he doesn’t have a foot to stand on, he really means it!

His next appointment with Dr. Heady is next Wednesday in the afternoon. The IV antibiotics should end by then so hopefully we’ll be down to two home health visits per week (instead of seven) as the nurses in Dr. Heady’s office can reattach the wound vac after his appointment. I can see those savings start racking up!

I have a new nickname…

Ron’s decided to start calling me “Merle” because I am looking so “haggard.” I did actually sleep better last night (thanks to nighttime NyQuil capsules) so I look like “haggard” had a face lift! I took capsules and slept very well from about 11:00 pm until 1:00 am when Ron needed me to adjust his leg and the wound vac tubing.

He said I took about 30 seconds to fall back asleep. I think I stayed asleep until about 5:00 am when Ron needed to get up to the restroom and then he went into the living room so I could go back to sleep.

The alarm ringing at 7:00 am (and my own bladder) woke me from a deep slumber. Now I just need about another week of sleep like that and he’ll have to think of a new nickname.

Wednesday, February 27, 2008

I am allergic to our bed

I discovered it quite by chance, only recently making the connection between our bed and the cough because of a series of events.

I had been bothered with a nagging cough for months and months. Someone told me about using Vick’s VapoRub on the soles of my feet, followed by socks, at bedtime. This worked very well and as mysteriously as the cough appeared, it went away. I just attributed it to a bug that I had gotten as I’d had several bouts of upper respiratory infections.

The cough as just as suddenly reappeared and this time I’ve not had any illness to tie to it, but I do have a “bed” connection.

In October 2005 we purchased a “Tempur-pedic” style king sized bed. For a while I slept very well on it and then I started coughing. Like I said, I’d been sick so I figured it was due to a hold over from the viruses I’d had.

In August 2007 we sold our home in preparation for moving into the handicap accessible house we were building. For the first couple of weeks we stayed at Amy’s house and slept on her Tempur-pedic bed. I coughed the whole time I we stayed there. For the next three months we lived in a furnished apartment and the bed was a normal, hotel-style mattress. After a short period of time the coughing stopped.

We moved into our new house in December 2007 and shortly afterwards I started coughing again. I still thought I was having problems with an ongoing virus and had been to the doctor more than once for medication.

I spent a couple of weeks in a different bedroom and the coughing stopped. I’m now back to sleeping on the king sized bed and I’ve been coughing for several nights.

My next step is to get a baby monitor so I can hear when Ron needs me and go back to sleeping in the spare bedroom. If I can’t hear on the monitor (since I’m deaf in one ear) I’ll sleep on the sofa as many nights as I can stand and then back in the bed until the coughing starts up again. I’ll repeat the process as often as necessary.

I’m praying for God to provide new beds for our house since it’s pretty obvious we need them. And, in the meantime, I’m thinking about buying stock in Vick’s VapoRub!

Saturday, February 23, 2008

Doing well

DH had a very restful night at home. His fasting blood sugar was 97 this morning (much better than my 160) and two hours later it was 138 (to my 139). We had a biscuit (he had two) with a slice of cheese, scrambled egg patty, and beef breakfast "sausage" (which was very good). DH is a snacker. Before his two hours after eating was up he was wanting me to give him some sugar-free candy. I made him wait out the two hours so I could see what was going on.

Right now he's resting in the living room with his foot up. Youngest DS came over and brought a movie for them to enjoy. He's also going to work on my computer and hopefully the only thing wrong is the fan. {crossing my fingers on that}

My grandson was diagnosed with the flu yesterday so I really hesitated to bring DH home from the hospital. I had DD get everyone Tamiflu prescriptions so we could hopefully keep anyone else from getting sick. Right now he's asleep in my bed.

DD and I have some housework to do, laundry to finish up, and generalized cleaning. Yuck. I'd rather take a nap.

We had the visiting nurse last night come and do the IV antibiotic. I could probably do it myself but it has to be reconstituted so I'm not too comfortable with that. I am sure I could remove it and do the saline and heparin flush. The IV has to be given every 12 hours for 10 days. I know the nurse will have to stay for the AM dose as I'll leave for work before she even gets here. I will try to take care of the evening dose.

Monday morning DH has to go to the doctor for some blood work to make sure his potassium and creatinin levels are staying down. The kidney doctor was positively amazed at his recovery (he stopped just short of admitting it was a miracle). We have blood work Monday am, foot specialist Thursday am, family doctor visit on Friday (still have to make that appointment). My PTO is rapidly diminishing. I am going to see if there is anyone in our church who can take him to do the blood work and the family doctor as they're both local. The foot doctor is 30-45 minutes away so that's too much to ask of someone else.

I have some deadlines at work so having someone else share the load would be nice. I also have to figure out how DH is going to get fed while I'm gone. He's transferring better but still can't manipulate things in the kitchen well enough to not end up with his foot down. We'll figure it out though.

Thursday, February 21, 2008

Perfect size 9

I used to think that was *the* perfect size. It was in the single digits and something that seemed pretty unattainable. After all, I hadn't been a size 9 since middle school.

I see all these skinny girls (women) running around and I just can't help but wonder how I'd look that size. Then I remember "I was born that size" and realize that it's really not feasible for me to be that thin. I was thin once upon a time. Back in 1983 and 1984 I was a single mom and didn't have much money so I fed my children before I fed myself. LOL - then I married DH in 1984 and things (mainly my waist line and my hip size) changed.

I tell people that I really am a perfect size 9 - the left half of me is a 9 and the right half is a 9. Put them together and I'm an 18 but I can claim a 9.... can't I?

Lane Bryant came up with a new sizing chart. I guess they figured we needed things to be revamped. When "girls" go in to the junior sizes, they start over. When juniors go in to the misses sizes, they start over (sort of). So, it should stand to reason that plus sizes should start over, too. Instead of being an 18W (which I always *knew* stood for "wide"), Lane Bryant has deemed that it should be a "3." I think that 14 is the new 1, 16 is the new 2, and 18 is the new 3. I like the sound of "3" much better than "18."

Of course, I'd still like to be a size 9 - before I'm decomposing in my grave. LOL! I said one time when I was being really flip about my constant struggles with my weight that I was going to invent "The Perfect Size 9" alarm because, surely at some point during the natural decomposition of a body it becomes a smaller size. I decided that I'd have this alarm sensor programmed to announce when I'd reached my ideal size (in this case, size 9). The alarm would also have another part to it that would make the announcement at someone else's house. Then, at the appropriate time, the announcement recipient would have to exhume my casket and take a look - and appropriately exclaim, "Would you look at that? A perfect size 9!"

I know, that sounds a bit morbid but it was all in jest - really - just to show how ridiculous people can be about attaching importance to what size someone is (or isn't).

I appreciate you…

Such simple words but they convey so much meaning! My step-son (DSS) said those words to me yesterday and it meant a great deal to hear them.

He said he appreciated that I take such good care of his dad and that I have stuck with him. I said I didn’t see that I’ve done anything special or out of the ordinary. Doing something different has never entered my mind. “For better or for worse” is what I signed up for – as did DH.

DSS said that a lot of women would bail when things got tough. That’s just not the way it’s done in my house.

I had a great role model – my own mother. She stuck by my dad when leaving would have been an easier (seemingly) option. Sure, they had their ups and their downs but she also made a promise and a commitment to him.

I give my mom kudos for taking care of my dad. He had his first heart attack at 56 and passed away in 2005 at the age of 74. She nursed him back to health many times – even when her own health was bad. My dad had several procedures over several years and my mom took really good care of him. She cleaned up after "accidents" and was there, waiting on him for anything he needed - anytime he needed it. Until I was in this situation I never realized how much work it was and how hard it must have been on her. I told her recently that I totally salute her efforts. I'm glad I was given the opportunity to tell her how much I appreciated how hard she worked all those years with my dad. I'm sure it was never easy for her as he wasn't the best of patients and didn't possess a lot of patience.

So, if there's an opportunity for you to tell someone they're appreciated - no matter what the situation - then make sure you jump on the chance to share your appreciation. I know my mom appreciated being recognized and I appreciated being recognized.

Wednesday, February 20, 2008

God is STILL in the miracle business!

DH did not lose his foot! He had infection to the bone, but not in the bone. His kidneys are still bad, potassium is fluctuating, but overall looking better. The surgery on his foot went well and as soon as the bleeding stops they’ll put on the wound vac. They’re going to put in a PIC line for IV antibiotics (he’ll have those for about 6 weeks). He’s full of whiz and vinegar and wanting everyone who comes in the room to bring him a cheeseburger. He did get to eat today but wants cheeseburgers instead of anything else.

He should move out of ICU tomorrow if his potassium goes down to normal.

Thanks for all the prayers! They’re working. There’s lots of people all over the country – and some in other countries – praying for him.

Tuesday, February 19, 2008

Give thanks...

I figured with all the negative stuff that I've posted here lately, it was time to post a positive note.

I'm thankful for so much in my life that I don't know if this blog has ample space to contain it. Most of all, I'm thankful that I have a risen savior, Jesus, and that He loved me enough to die for me.

I'm very thankful that God sent me to Kansas in 1984 to meet my soulmate and that we've had so many wonderful years and happy memories. One year for Father's Day I wrote how thankful I was for him and one dear friend read it on Sunday morning in church. I wish I'd kept a copy of it as it was so deep and so much from the heart and I don't think I can re-create it as well as it was expressed the first time. DH is my other half, and we complete each other. We finish sentences, think the same things at the same time, start singing the same crazy jingles - or our "own" twist on them - and laugh at each other's antics. We can be as happy sitting side-by-side in silence as we are talking. We don't fight over the remote - he usually defers to me as he knows he'll probably fall asleep anway. We just plain don't fight. In nearly 24 years, I don't think we've had more than 1 or 2 major arguments. We may disagree, and I push him to talk about it, but we just don't fight.

I'm very thankful for my children. They are truly my pride and joy. Oldest DS has accomplished a great deal with many, many challenges that he had to overcome; he became a nuclear power mechanic in the Navy when many people (his parents included) didn't think he'd make it through boot camp - not because he's not smart, but because he wasn't disciplined. DD had to be the "oldest" many times and take care of her two brothers; she excelled in Navy boot camp and received the Academic Excellence Award; she became a 1st Class Petty Officer very early in her Naval career. Youngest DS had to overcome being the youngest (and sometimes this is hard work living up to everyone else's expectations); he would have followed his siblings into the military except for a serious broken arm which prevents him from being able to perform the physical aspects.

My children are very, very generous. Navy son has brought back many nice souvenirs from his travels for everyone in my family - brothers, sisters, my parents, and a niece. None of these items were cheap and all were thought of with the recipient in mind. After my father passed away, he bought my mother a new computer when hers quit working. He's upgraded mine in the past. He bought his dad a Jenn Air gas grill. He's bought his siblings nice gifts at Christmas. He just doesn't have a selfish bone in his body when it comes to giving to others.

DD has also been very giving. She helped support us in 1999 and 2000 when things were so bad. She's let us use her credit in the past to help re-establish our own. She sees a need in the community (or our church) and she's trying to find a way to take care of it, even if it comes out of her own pocket. She's compassionate and doesn't want to see anyone suffer or do without. When she was in high school, working part-time, she adopted a child through Children International.

Youngest son hasn't yet experienced the financial rewards his two older siblings have, but what he's shown is just as important. He has compassion for others. He has spent time with the elderly when we visited nursing homes or when we lived next door to elderly people. He volunteered one semester at our church daycare working with the children. He's volunteered to do many things that I am sure I don't even know about. He's championed those who were being attacked by others. He participates in fencing bouts in Renaissance Fairs - and he's very good at it. Now, he's the computer repair person in the family. We'd be in a world of hurt without his technical knowledge.

I'm thankful for my friends. I have some very dear friends I've had for decades (don't want to give our exact ages by saying just how many decades!). I've got some new friends I feel like I've known all my life. Friends come into our lives for a reason - for a season - or for a lifetime. (I don't know who wrote that, but it's so beautiful and very profound.) I'm thankful to say I've got some of those lifetime friends.

I'm also very thankful for another friend - our chiropractor! He's kept me painfree (as much as possible) for over 20 years. He's helped us out a great deal over the years and we don't do enough to thank him for his efforts. He's come to our house to treat us when we were in too much pain to come to his office. He's even come to our house when we neglected to come to his office for treatment. Too bad there's not more people like him in the world!

I'm thankful for my job. It helps provide a roof over our heads, clothes on our backs, and food on the table. I'm thankful it gives me gas money. I'm thankful that it's fairly flexible and I can work around doctors' appointments if I need to.

I'm thankful for my grandchildren. If I'd know how much fun they were going to be, I'd have had them first. LOL!

I'm thankful for my stepchildren and for my husband's ex-wife. They make a great extension to our family and I can't imagine how life the last 24 years would have been without them.

I'm thankful for so much that I could just go on and on - but I think you see that God has been really good to me and provided for me better than I could have done it without Him.

So, I want to take this time to give thanks to all who have helped me along the path to where I am now. I can't imagine how I would have had any better life if I'd done it differently. My life would be so empty without you all. May God richly bless you all in everything - EVERYTHING - that you do!

Call if you need anything…

I wonder how many caretakers have heard those words. And, to be honest, in the past I’ve said them myself – not thinking that asking them to call me was not how it should work. Of course we (the caretakers) need things, but unless it’s a BIG thing, we’ll handle it ourselves.

Here are a few ideas for people who want to help but don’t know how. Don’t wait for us to call you. If it’s winter and your drive/sidewalk needs shoveling – go shovel ours. If it’s summer and your lawn needs to be mowed – go mow ours. If you’re headed to the store, call and ask if we need bread, milk, eggs, or even toilet paper. If it’s one or two items, just give it to us. If we need a shopping trip, volunteer to sit with the patient or if that’s not your thing, ask for the list and a signed check. We don’t expect people to pick up the tab for a major “we’re out of everything” shopping trip, but if you can afford an extra carton of milk or something, just give it to us. We’ll figure out a way to repay your generosity later (even if it’s sharing it with someone else).

If the caretaker also works full-time, there’s always something around the house that needs to be taken care of. Even though I do something every night before I go to bed, there’s still laundry to do, a bathroom to be cleaned, dishes to put in or take out of the dishwasher, floors to be swept and/or mopped, etc. Sometimes we would like an evening with our feet up. It’s been months since I’ve read a book because there’s never enough time to do all that I feel I should be doing and still have leisure time. I spend some time on the computer every night reading email and chatting for a while with friends, but I’m usually doing laundry, giving a bath, or doing the kitchen at the same time. If I’m watching TV, I’m folding laundry or I’m already in bed for the night. Sitting and just doing nothing is never an option and I’m sure it’s the same for most caretakers.

Call and say you’re on your way over to visit. Bring some snacks and fix the tea or ice water when you arrive. Wait on the caretaker, even though it’s his/her house. Grab a broom or the sweeper and take on a chore.

If you wait for us to call you before any of these things take place, it won’t happen. Then when we are overwhelmed you’ll wonder why no one called on you. We don’t ask. That’s why “we” are the caretakers!

Monday, February 18, 2008

Money Money Money

I am totally amazed at the cost of things these days. We need a ramp. NOW rather than later. I talked to some men from my church who do this sort of thing and I wasn't thinking anything fancy - just a ramp to get DH in the house when we come home from the hospital.

$1500 was my quote. I just about croaked but I didn't. I just can't worry about one more thing as there's no room in my noggin to float any more stuff around. Finally got the carpenter to say if he borrowed a framing tool, he could do it just straight out from the door, and not really the right slope, for $600. That would not be with handrails, but that's OK. And, I don't want it attached permanent to my garage floor. I'd like to use my garage to park in once we get stuff moved around and situated.

Even at this point, $600 is not a do-able amount. So, DD is paying for it. My DS gave me money to cover the two pieces of medical equipment I purchased last week. I need to figure out a way to get DH a new bed, one that he can get in and out of easier. We currently have a king size tempur-pedic type of bed and it just collapses under him. We really need a queen sized adjustable bed, more of a "craftmatic" type of system so there's more room for the scooter to maneuver. I'm praying for that to be provided to us because it's not in my power to buy it. I'm also praying that insurance approves the trapeze and floor stand.

DH was supposed to work two more years after we moved into our house. Instead, he worked two months. Now I need to figure out how to pay for it. If it was just us I'd say we'll do our best and if that's not good enough, we've started over before and can do it again.

But, DD borrowed $10,000 and spent another $500 out of her pocket to make the living area in the basement for her and my grandson. I can't let them down and it would be really hard on him to have to move again. Being PDD-NOS he doesn't adjust to change very well. I had planned on putting together enough money to finish the family room area for them and have a separate little kitchen so when my grandson got up in the morning he'd have a place to have his breakfast. Plus, I wanted it to feel like she had her own place in the basement and not just living in our basement. I would feel so bad if we lost her money in all of this too. The kitchen is about $3500. We also don't have a yard. That's another $1200 and we have to figure out a way to put it in before the Kansas rains start or the lake behind me will be reclaiming my yard. That's not good... And we also need to finish fencing our back yard so my grandson doesn't fall in the lake. Being developmentally delayed, he doesn't understand some dangers. We have "beeps" on all the doors, a gate at the top of the deck, and one at the bottom of the stairs. But, kids have been known to figure out other ways around safety nets and we want to make sure the yard is fenced to keep him safe. We also need some pavers put under our deck so he has a safe place to play with his toys. All of this costs money, money, money...

I said before that I sometimes dreamed that people showed up and took care of things for me. I still do to a certain extent. It would be nice to have someone ring my doorbell and say "I'm here to..." and when I said I didn't have money to do that be told it was all taken care of. I've taken care of everyone else for so long that it would be really nice to have someone take care of me for a change and me not have to worry about it. That would be a switch for sure.

My kids do what they can but none of us are trained in doing carpentry work. I don't like doing "man" work. I just don't have what it takes to do that stuff and it frustrates me. DD stained all the woodwork in the basement and we both painted (although we're not finished yet). DS is great at hauling this and hauling that and he's taking care of some computer issues (my desktop decided today that it needed to overheat; now isn't that lovely?) But, he doesn't make a lot of money and he's totally paying his own living expenses now so I'd rather he make sure that he stays afloat before he helps us out.

I have a real peace about the outcome of DH's medical procedures and I am not going to worry about the financial aspect of it. On Sunday a lady came up to me at church and said she had a word for me from God. She said she'd been praying for us on Friday night and God told her to tell us that He was in control and He had a reason for these things happening right now. We didn't need to know or do anything more than trust in Him and let Him have it. That's what I'm doing. If God so chooses, He can lay it on someone's heart (or more than one someone) to provide all the things that we still need here.

Acute Kidney Failure

Well, we got to the doctor's office for DH's 7:45 am appointment. The doctor looked at his foot and said that yes, he needed to be hospitalized for surgery to irrigate and debride the foot ulcer. I said that we'd worked really hard to keep him off his feet but because of his other health issues, it was really hard for him not put any pressure on his foot when he transferred from point A to point B. The doctor said that he could go ahead and be admitted today so they could start him on IV antibiotics and get him stablized before the surgery.

We get to the hospital and get into the EAU - Express Admitting Unit - by 9:00 am. I talked to the physician's assistant (PA) about DH's ongoing problems, they drew some blood, they did all the admissions sort of stuff.

The PA came back in shortly and said that DH's potassium level was 8.2 and his creatinin level was 4.5. Normal creatinin max is 1.0 and his normal is about 1.5. The kidney specialist said that on a "good" day, his kidneys are only functioning about 50% but with the creatinin this high, they're functioning at about 10%.

I knew that when they started talking kidneys again, that we were in trouble. When he went into kidney failure October 2006, we had a lot of these same numbers being thrown around. I also knew they would put in a catheter, which DH hates (I guess it's really painful). The doctors started coming and going out of the room and there was nothing "express" about his admission at all.

To give them credit, we weren't just left sitting in there. They did lots of blood work (he got lots of sticks), did a breathing treatment, gave him lots of medications via IV (including the antibiotic, which he had a reaction to and they had to stop it almost immediately), and just did a lot of things on him - and the wound team came and evaluated him also.

He's in the burn ICU partly because that's the only room in ICU they had and partly because the burn unit nurses deal with wounds all the time. Before I left for the evening he'd had x-rays of the foot to make sure there's no infection in the bone and tomorrow I think he's having some more tests.

I'll go back there after work tomorrow and then he'll have his surgery on Wednesday morning at 7:30 am.

Friday, February 15, 2008

I want to swim with the dolphins…

Think about it – God’s beautiful creatures surrounding you in a body of water. They have a “sixth sense” about people who need emotional healing or protection. I’ve thought for years of just relaxing with the wonderful animals and letting my cares just drift away with them. It’s a very symbolic thought. I think to be surrounded by these majestic and gentle animals would be the most wonderful feeling.

My husband and I knew each other for 19 days before we got married. We met on a blind date through mutual friends and although it was not love at first sight, we both knew there was a special spark. He had the bluest eyes I’d ever seen (they’re still blue) and I remember when he took off his glasses that I thought I’d never seen anything more beautiful. I thought I could drown in them. Later that evening I heard him play the piano – not something fancy by Mozart or Beethoven, but just a simple melody that he had composed. DH does not read music but I could sit and listen to him play the piano or keyboard for hours. Unfortunately, his hands don’t work on the black and whites any more so I only have my memories of how relaxing it was.

We had a very small wedding at those same friends’ house and said we’d take a honeymoon some other year.

We’ve never been able to take that honeymoon. There’s always been some other crisis that we’ve dealt with so we decided that we’d do something special for our 25th anniversary. That will be in 2009 and I pray that we’re able to still be here and be together – and in good enough health to make it happen.

We’ve also not really had a real vacation. Yes, we’ve had pieces of trips here and there - camping, fishing, and a 4-day driving trip through Texas - but always counting the pennies or cutting it short because of money. We even tried to do Disney World one year. We took three days and stayed in a budget hotel, I pushed DH through the parks in a wheelchair (which was very difficult) and we took our youngest son. I have to say that none of us really enjoyed the trip and I don’t feel like I “did” Disney World. There isn’t any real handicap access to many of the rides and when the gate is open for wheelchair access, people just pushed us out of the way and ran past. I was very disappointed in how we were not helped as a general rule. DH decided to stay at the hotel the last day and let DS and I do the last park ourselves. Unfortunately, that would have been the park he would have enjoyed the most – Animal Kingdom.

So, last year my DD, grandson, and I joined my oldest son and his wife in CA to enjoy Disneyland. Grandson was too afraid of a lot of things but we still managed to have a pretty nice time. I’m just sorry that DH didn’t get to enjoy that trip with us. So, the plan was to go as a family – DH and I, son and his wife (and their little boy), DD and her son, and youngest DS. We wanted to be able to spend a whole week in Orlando – and do everything that we’ve not been able to do for the past 24 years (taking into consideration this year) but I’m not certain that will happen if things don’t change for the better for DH’s health. Also, now that he’s not working there’s the financial aspect to take into consideration. Even a “cheap” Disney vacation is not cheap.

A “staff” of “staph”

The trip to the wound clinic was pretty uneventful but they did notice that he’s got more redness and swelling along the lateral edge of his foot. They asked me if it was better or worse than yesterday and it’s definitely worse. The dressing and the diaper (I’m using diapers outside of the dressing to keep the bed from getting ruined) were both pretty saturated with drainage and it had only been 24 hours since it had been changed.

The culture showed that he has staph infection in the foot so they started him on Bactrim today. I’m to take him to the emergency room this weekend if he gets worse and keep our appointment with the doctor on Monday. There’s no chance I’d miss that appointment!

He has been acting very strange the past few days so I asked if it was because of the infection but the doctor didn’t think so. He’s slow to respond to sentences and asks inappropriate questions. The questions make sense, but they are not related to the topic of discussion at the time. He’s moving very slowly and can’t finish a thought.

After I took him home, I made a trip to the medical supply pharmacy and picked up the toilet rails and the bed rails. $117 later I hope they work for him. We still haven’t heard if the floor bar and trapeze have been approved by the insurance. They’re too expensive for me to purchase outright.

I know there are a lot of people praying for him so I’m looking forward to being able to post praise soon!

Thursday, February 14, 2008

Tardive Dyskinesia or Parkinson's-like Symptoms

DH took Metoclopramide for years for his diabetic stomach problems. And, I do mean YEARS - maybe five or six. Metoclopramide was dispensed because it helped the gastric stasis he had. We were never told that it was only intended as a short-term drug - maximum of six months - until he developed Parkinson's-like symptoms and was referred to a neurologist.

The neurologist looked at his list of medications and immediatly stopped the Metoclopramide. He ran a couple of tests and said that he'd developed "intention tremors" or Tardive Dyskinesia. Stopping the drug wouldn't reverse the problem but it keep it from getting worse.

The list of my husband's medications for his various ailments is quite long and I frequently go online to check to make sure there's no new contra-indications or anything else I need to worry about. I found one today that makes my blood run cold...

Lately, his intention tremors have gotten worse and his body sometimes shakes uncontrollably. If he wants to write his name I sometimes have to hold his arm down on the table to make it so he's able to do so. He jerks in bed. He spills food down his shirts. He spills liquids when trying to take a drink. Some days it's worse than others.

As I was looking up the Metoclopramide lawsuit (I'm thinking about looking into this), I ran across another of his medications (Zypexa) that CAUSES THE SAME PROBLEM! He's been on Zyprexa for quite a while (don't remember how long) but discovered it's also a medication that's been linked to Tardive Dyskinesia. (There is also a class-action lawsuit involving this drug.)

Is this a coincidence? Are his symptoms worse because of natural progress or are they worse because he's on Zyprexa? I don't know but I intend to find out.

Not better, but not worse today

The hole didn't look any worse this morning, which is good. I would have rather that it looked better but no change is still OK (I think). We go back to the wound clinic in the morning so maybe they will have a positive comment.

I asked our primary care doctor to order a floor stand and trapeze to help DH get situated in the bed. I'm going go to the medical supply pharmacy and pick up a toilet grab bar ($45) and a bed rail ($65) so maybe that will also help him when transferring. I don't really have the extra right now but I'll make do somehow. God always provides!

It's Valentine's Day and lots of ladies at work are getting beautiful arrangements. While I don't expect to receive one, it's nice to admire theirs. The best gift I could get this Valentine's Day is for my DH to be healed.

Wednesday, February 13, 2008

The black hole is growing

I nearly threw up when I changed the bandage this morning. The foot looks black in the hole, which is definitely not good, and it smelled really bad. He's not on his foot at all, except I'm sure when he transfers to the toilet he puts it down.

Honestly, I don't know what to do. He's not "sick" so they can't hospitalize him to keep him off his feet. The doctor's office said I could look into a nursing home but I don't want to do that and I've not even mentioned it to him. He would hate that and has specifically asked me in the past to not ever put him in a nursing home. My daughter says don't think about it. How can I not? I know it's in God's hands and I'm really trusting for a miracle, but this human body has so many failings that all I can do is pray for faith to be increased as well as the healing.

I'm having some members of my church come by tomorrow to measure for a wheelchair ramp to be built inside the garage. It can come out on a landing and go down the front and side of the garage to the garage door. That way, there will still be room for me to park the van in the garage so DH doesn't have to go outdoors to get inside. I know the materials will be quite expensive and I'm not quite sure how I'll pay for it yet, but it's got to be done. He can't be walking down the stairs into the garage when he's supposed to be totally non-weight bearing. One of the men coming is a professional carpenter so it will look nice, but I'm not sure what he'll charge for his labor. We'll just have to leave it in God's hands and see what He directs.

I'm really praying for a miraculous healing and a financial miracle. If DH never goes back to work, that's OK - we just need God to provide the resources to make this an option for him. And, it would definitely come from Him because it's not in me to do for us.

I think I may be numb because I can’t seem to shake the feeling of despair. I’m not my usual chipper self at all this morning and I know this has to be harder on DH than it is on me. Sure, I'll have an increased work load but he will have lost more of his identity. He's already in a state of mild depression over the loss of the use of his hands (from the neck surgeries and the neuropathy) and although he hasn't really been obviously bothered by the loss of his other foot (he's had a very good attitude), it's still hard. But, you couple all of that with the potential for losing his right foot/leg and he's got a lot of mental demons to deal with. Any time I start to feel sorry for myself, all I have to do is focus on his pain and suffering and I'm ashamed of my whiney self.

Tuesday, February 12, 2008

Oh man, it’s ugly!

I got my first look this morning at the cleaned up wound. When I changed the dressing last night, DH was sitting in a chair with his foot hanging over the end. He had bled through all of the dressing and into the padded ankle “boot” he had on. I had to throw it in the wash as spot cleaning would not have helped.

I put quite a large dressing on the foot and then covered the whole thing with a newborn diaper. LOL, I figure if it holds “yuck” then it could be used to hold (potentially) any blood or drainage from the hole.

When we went to bed I made sure to prop DH’s foot up on a pillow so his heel was hanging off and not touching anything. I woke up two or three times and all was quiet so I was hoping that he was in the same position he’d been when I turned out the lights. He didn’t seem to have moved.

With the peripheral neuropathy in his feet, he really has no idea of where his feet are or how much pressure he’s exerting on them. He has no upper body strength from the prior neck surgeries, trembles, and is basically in pretty poor overall health. I had a hard time helping him transfer from point A to point B without him putting his foot down on the floor for stability. I kept telling him to get off his foot. Even getting into bed he was pushing down on the mattress to position himself in the bed.

This morning I got to see the full effect of why the doctor was so upset. His foot is bad, really bad. It’s so bad I wouldn’t even take a picture to show him. He’s pretty upset and worried right now and I didn’t want to make it worse for him. I re-dressed it and added a maxi-pad to the stack. I did put the diaper back on, too. If nothing else, I am resourceful! We’re still waiting on insurance approval to get the new wound care items. The pharmacy (and my doctor’s office) has been waiting since Friday for insurance to say that yes, they’ll cover these items. They are expensive so I’m sure they’re hesitant as to the “need” of these items. Maybe they’d like to cover the amputation and follow-up care for months instead??? Insurance companies… Sometimes they like to play “god” on earth.

I need a trapeze and trapeze floor stand but they’re very expensive and not something I can afford right now. We have to have the floor stand and the trapeze – which are sold separately. I’m not sure I can even find what I need online. I tried the local center for independent living to see if they have one I can borrow but they do not carry that kind of equipment. Oh well, back to the drawing board!

I called the doctor’s office to see if they’d consider putting DH in the hospital. Maybe insurance wouldn’t throw a fit over that if it meant that he’d retain his foot and they wouldn’t have to cover some major medical expense. His last amputation ended up being close to $100,000 in expenses. We paid quite a bit out of our pocket; in fact, I just paid off one of the bills last fall. Visiting nurses were $60 per week, doctor visits were $20-40 per week, the wound vac cost over $2,000, etc. On top of everything else and besides the emotional cost, I’m not looking forward to the financial cost. If he went into the hospital today, I’d have a $100 co-pay. Of course, we’d lose any salary but he’s already off work this week anyway.

DH has a really good outlook on life but even this is something that he’s having a hard time dealing with on a day-to-day basis. It would be depressing to know you only had ½ of one foot and the outlook for the other foot was grim. I’m not sure I could handle it. I give him kudos for his attitude.

Monday, February 11, 2008

It’s not supposed to be like this…

You follow doctor’s orders and things are supposed to get better. In the case of my husband’s foot – it’s not. The doctor was nearly beside himself this morning when he saw DH. He said the foot has gone from a stubborn blister that wouldn’t heel to a crisis – and if it got even 1 cm deeper (that’s less than ½ inch) he’s looking a possible amputation because it would be into the bone.

This takes us back nearly exactly two years ago when the other foot was 1/2 amputated on April 1, 2006. At least then DH had another foot to balance on when he transferred from stool to bed to wheelchair, etc. He can barely balance on what’s left of that foot now. I don’t know what will happen. He’s a big man and I don’t see myself being able to lift him or help him transfer from place to place.

Everyone says I’m such a strong person. I’m not really. I’m really crumbling on the inside but I can’t show that to anyone. Who would I show anyway? Each individual person in my life who I might rely on has their own set of problems to deal with and adding mine into the mix would just complicate things. It's easier on everyone if I just keep plodding along as I have been. My mom is elderly and in poor health. My siblings have too much going on in their lives and of the five, there's only one I would ask for help anyway. She's got too much on her plate to add anything else. I wouldn't even think of asking any of my brothers for anything. They don’t want to hear about anyone’s problems. Heaven forbid, you might be asking for help and they surely can’t do anything like that.

That leaves my church and I have shared some things with some people who have asked about him. We had a man from the church show up the other day to fix our flat tire. His wife told him we had a flat and he should come over to change it for us. I haven’t gotten it in to get fixed yet but I’m not in any hurry since DH isn’t driving anyway. But, our church is small and I don’t know what they could or would do besides pray, and they’re already doing that. I love our pastor and his family and I know they’re praying and believing for a complete healing for DH.

I have a couple of friends who have also volunteered to help, but you can’t really ask friends to change a dressing on an open wound or help your husband get to the toilet. That is asking too much. I don’t like to do it but that’s part of the territory of being married and I know if the roles were reversed, DH would do it for me. The only thing I could ask is for someone to bring him food while I’m at work, but even that is an inconvenience as everyone has responsibilities during the day. When he had his other amputation, the church brought him lunch nearly every day, which was a real blessing. We have a different pastor now but hopefully if things don’t go well we could still work something out. Most of my other friends live either out of the state or in another country altogether, so they're out for sure (I sure do enjoy my IM conversations though with H.A-S.).

My husband’s ex-wife is a great resource and is there if I really need her. But she’s got an older husband who has his own health problems. They don’t need to worry about us. She sent me a very nice email and said she appreciated everything I do for DH and she’s sure the kids do, too (talking about their kids). If they knew they’d appreciate it but they’d actually have to ask how their dad is doing to know what's going on. One does as she works in the same building I do and I sent her a picture last week. Her husband is an electrician and they have done quite a bit of labor-intensive “free” work for us since DH can no longer function as an electrician. There are also two boys, the younger of them has his own health problems and doesn’t realize how bad his dad is, but I know he appreciates me. The other one is married and has a pretty busy life, too.

That leaves only God and I rely heavily on Him. I honestly don’t know where I’d be without His grace and love. I do find myself crying out a lot and asking Him to lift me up and increase my faith.

Today is definitely one of those days where I've been feeling sorry for myself and having a mini-meltdown. I'll get through it and I know that everything will work out but it is hard to cope when life keeps slapping you down.

Wednesday, February 6, 2008

The agony of “defeat” (the feet)!

I must say that DH’s foot condition is really getting to me. I’m struggling this morning with what definitely has to be a case of depression. I could just cry. I have to keep reminding myself that we are blessed; God is in control, the situation could be much worse, etc.

I changed his bandage this morning and nearly lost it. It was all I could do to not gag, especially since I don’t want him to know how worried I am or how bad it looks. It’s bad enough that one of us is losing sleep over his foot (although last night Prince Tylenol PM helped me out a lot). It no longer smells like rotting flesh, but the definite blackness of the bottom of his foot screams “dead” to me. The nurses at the wound clinic also thought he had necrosis going on.

His foot didn’t bleed too much over the course of yesterday and last night, but we also had a pretty thick bandage on it. The silver/alginate pad they used dissolved a bit leaving behind a thick, gooey mess. It was nasty.

If you read this, and you’re a praying person, please pray for us. God is still in the miracle business and I believe in the power of prayer.

Tuesday, February 5, 2008

More medical woes

We went back to the foot doctor yesterday and he cut some more dead tissue away from DH's heel. The wound is growing in circumference but not getting deep, although this morning there was quite a bit of necrotic tissue that I hadn't noticed before. He’s been on Bactrim for about a week but the doctor didn’t culture it (which I didn’t even question until today – more on that later). Last week he referred DH to the wound care clinic at a local hospital and their first opening was this morning. Yesterday the foot doctor asked when his wound center appointment was, did a bit more trimming, and put him in a “cam walker” boot to help keep the pressure off the heel.

This morning at the wound center, they asked more than once if the doctor had done a culture. They were surprised that he had not done anything but prescribe the Bactrim but said he was probably in the mindset that DH had some sort of staph infection on his foot. They’re going to do a culture on Friday morning as the Bactrim has to be out of his system for 48 hours in order to get an accurate reading of any bacteria in the wound.

They also did a test to check his circulation to his toes on his right foot and said that he has some early stages of some circulatory changes. There’s nothing serious going on right now because he has good pulses to his feet but that he definitely has some changes happening. They were very happy that his sugars are doing so well.

The dressing they put on his foot has silver in it to help promote healing. It also contains calcium alginate (which we’ve used before on his neck when it was opened due to a staph infection from neck surgery). I watched her do the type of wrap they want on his foot so I can do it at home. I’ll change his dressing tomorrow morning and Thursday morning and then they’ll look at it Friday morning to see how it’s progressing.

I'm just really worn out with this. I know that God has a handle on things but this earthly body is sure tired. DH has trouble doing most things for himself so although he goes to work (most of the time), he's unable to put on his shoes and socks, can't fasten his coat, can't walk very far without difficulty (in fact, he's not supposed to be walking at all right now), can't unload or load his scooter into the car, has some basic hygiene problems, etc., etc., etc. There are times when I'm cleaning stuff up that I'm not sure if it was caused by the dogs, my grandson, or my hubby. I try really hard to not complain but I have no outlet. I don't have anyone to pick up the slack if I need it (my daughter also lives with us but she works full-time, is a full-time student, and has a developmentally delayed son - age 4 - to deal with). DD will jump in if I need her to but most of the time the responsibility for things falls on my shoulders.

Right now, we have a flat tire - clear to the rim flat. It's been flat for nearly a week. I can't change it, DD can't change it, and DH surely can't change it. I will have to call AAA on Saturday to see if they'll come change it. I don't know if they'll do any more than air it up for us.