Tuesday, May 27, 2008

Jenny's parents

I think they are really getting into the grandparent routine. Their house is in Irvine and since Shaun/Jenny live in San Diego, I think it’s about a 2 hour drive up there. They went Friday during the day and came Sunday night. While they were there, her parents took them shopping and bought Alexander about several outfits in the next size up (some a bit larger, too), bought a floor pad for his nursery so he can play safely on the floor without picking up cheap apartment carpet fuzz, got them a new vacuum since hers wasn’t working well, babysat Saturday night so they could go to the movies and dinner, and took them to dinner another night to celebrate her brother’s birthday.

In addition to that, they gave Alexander a “red envelope” gift of cash – for the Chinese New Year celebration all children get a red envelope with cash in it. Her brother gave him some money and their power of attorney lady (she pays all of the family’s US expenses while the parents are in Taiwan) also gave him a red envelope gift. That was very nice of her.

All of that is in addition to what they already gave them. I'm so glad that her parents are doing so much for them. I am glad that they're in a position to do things for them that I'm not. I don't want Alexander to go without things he needs, and I'm sure they don't either.

They’re not going to pick out a Chinese name for him until sometime after they get back to Taiwan. They’ll consult with other members of the family to get input on just the perfect name for him. I think that’s cool that they are going to put so much thought into it. Amy asked them to give Isaiah a Chinese name, too since he’s now part of their family.

Shaun says they’re being very nice to him. They are aware of his OCD problem of not eating any food it anyone else touches it, so they let him serve himself from the community food platters before they took any food themselves. I think that was probably a really big thing since the dad should have been the first one served. I'm very grateful that they seem to understand Shaun's little peculiarities. He is a really good person but just has a few things to get used to.

Jenny’s sister came from Taiwan Monday and they are getting together again on Wednesday. I imagine her sister will also have a red envelope gift for Alexander.

Just venting

Sunday was a very stressful day for me. I don’t know why, but I felt like my nerves weren’t just at the surface, they were above the surface. I don’t usually have bad days but I imagine that at some point during trials everyone has a bad day now and then. I don’t want to complain, and I think that most of the time I do well with that. Amy said I should just blog it so here I am. I didn’t intend to but figured it was important to show the “bad” side of me as well as to show anything else.

On the last Sunday of every month our church has a group lunch and then fellowship time. We also don’t have services that evening so people don’t feel like they’ve got to rush home and then come back again in just a few short hours. Since Ron’s been sick we’ve missed February, March, and April. I figured he’d feel like going for the May service but he’s actually only been to church two or three times since the middle of February. Until he got off the IV medication I didn’t want him to go because of the risk of infection. Since he’s been on this new antibiotic he’s hardly felt like getting out of bed.

With the financial stress that we’re under I wasn’t sure I could even afford to take a fair share of food so I didn’t know if we’d plan on attending or not. I fixed a bunch of fried chicken legs on Saturday evening so decided we could take those and I wouldn’t feel badly about attending and eating.

Sunday morning he did not feel up to attending church but he told me to go ahead and stay for the dinner. I told him that I didn’t want to leave him alone that long with him not feeling well and that I’d just come home. Church lasted a bit longer than usual and a couple of people urged me to stay. When I said that Ron was too ill for me to stay, they urged me to take some food home for us to eat. At first I deferred because he’s not had much of an appetite but I finally relented and went to fix a plate.

With his dietary restrictions I had to be very picky about what I took home but I found a nice selection of food to take him. Even though I was urged to fix a plate for each of us, I could only carry one and I thought that since Ron hadn’t felt well and hadn’t eaten much lately, one plate would be enough for both of us. Since no one volunteered to help me out I just left it at that.

I got the food home and fixed up the tray for Ron, who was still in bed. He asked if I had stayed for the dinner and I said that I had not wanted to leave him alone that long. He asked if where was my food and I said I could only carry one plate. I honestly thought he’d tell me to get another fork or he’d save me something. I left the room to go change and when I came back, he’d eaten every bite. I don’t know why this upset me so much, because I wanted him to eat, but it did. I think I wanted him to think of me. When I expressed frustration he asked me what was wrong. I said I thought he’d save me something to eat. He asked me why I just didn’t say anything and I said I didn’t think I had to and that I just assumed that he’d be considerate and think of me, too. He said he “told” me to stay and eat with the others but I told him that I couldn’t do that, especially since I’d told everyone how bad he felt and how would it look for me to stay and socialize when he’s home sick in bed with no lunch.

Once I realized that he felt better I was really upset as I figured he “could” have gone to church. He’s been wallowing in self-pity for the past couple of weeks and because he has, he’s really not been considerate of anyone else’s feelings – so I told him that, too. But, I told him in a nicer way. “I could say that you’ve been wallowing in self-pity for the past couple of weeks, but that would be rude. I could also say that you’ve been very inconsiderate of everyone else around you, but that would be rude, too.” He agreed that it would be true.

While I was having my meltdown, I did apologize to him and say it was my own fault for not speaking up and ASKING him to save me some food but I was just really hurt that he didn’t think of me. I said I’m always dropping what I’m doing and running to see what he needs, when he needs it, and taking care of everything for him and I’d just like for him to realize it and think of me, too. I said I felt very left out and that I was really upset that even though he didn’t want to socialize that I thought it was very inconsiderate of him to expect me to do without friendship and fellowship with others. Even now, two days later writing this it’s painful to admit and think about.

I said people are always asking how he’s doing and is there anything they can do for him, but no one asks how I’m doing or if I need anything. I realize that I shouldn’t want people to focus on me but it would be nice for someone (other than Amy) to ask if there was anything I needed. The pastor’s wife will ask “you doing alright?” but I don’t really feel like I should say anything other than “OK.”

I told him that he had expressed to me how lonely he was and how alone he felt so I’d been doing all I could to spend all of my free time with him. Staying home alone day in and day out, with very few visitors, is very tiring. Even though he is somewhat of a loner he does get tired of it only being him, the TV, and the dog.

He said, “Let’s get me dressed and we’ll go back up to the church so you can join in the fun.” At that point, I knew everyone was finished and they would be clearing the food away so I declined. I was just so beside myself that I couldn’t get over it. It had to be just “one of those days” and I knew I’d eventually be fine.

A bunch of people were then going to play softball and he said I should go to that. Again, I said I could not go off and leave him. Amy got home after that and tried to get me to go, too. I knew I would not have a good time watching everyone play softball.

Eventually my meltdown ended and the rest of the weekend was fine. Today I’m fine and I’m sure tomorrow I’ll be fine, too.

Saturday, May 24, 2008

Positive updates

Monday's visit with the foot specialist: I think I may have already said that his foot is improving, although very slowly. The color was good and the PA didn't think the bone was exposed any longer. He'll return to the doctor this next Wednesday.

The nurse visit on Wednesday: Allison also commented that the wound is looking better but she did notice a small dark spot that could be a sign of necrotic flesh. We'll have to just pray that it's not that when the doctor looks at it on Wednesday.

Ron to family practice doctor on Thursday: Covered that one already so I won't add to it here.

Nurse visit on Friday: No change from Wednesday's visit, so that's a good sign. The black did not grow any.

Doctor visits for Friday: My appointment went really well. I've "officially" lost 10.2 pounds but since I know I'd lost some before I was weighed on the doctor's scales last month, I'm not exactly sure how much. My estimate is 15 pounds and that's good. I'm happy with it. I talked to her some more about the chronic cough I have and she decided that I'm probably having a reaction to the blood pressure medicine she put me on. We both think I've been on it since last August, about the same time the cough started. She changed it to another medication (bummer, the other was $5, this is $30 for one month supply) but said the cough may take 4-6 weeks to disappear. She gave me some strong prescription cough medicine to take at night. I also have a sinus infection so got some medication for that.

Ron had a sonogram of his left arm and the technician said it looked clear, so we're dealing with a bruise and nothing more serious. He then had an echocardiogram and the tech said he's still got a little bit of fluid around his heart. He was down a few more pounds so he's lost 44 pounds since March 23.

The kidney specialist was very pleased with his overall condition and blood work was much better. She said he was the most alert and looked better than she had ever seen. He does have a serious vitamin D deficiency and calcium deficiency. She started him on two calcium plus vitamin D pills each night, plus two additional vitamin D capsules. After a couple of weeks she'll repeat his blood work to see if he can stop the extra vitamin D. He goes back to see her in two months.

I didn't give Ron any of the antibiotic Thursday night or yesterday. He got one this morning and within 10 minutes had tightness in his throat and nausea. I told him we'd stop entirely until we talked to the infection doctor (he sees him also on Wednesday) but he told me to go ahead and give it to him. He doesn't want to halt the progress he's made.

He was really sick this past week so I'm not sure if I'm comfortable with giving it to him but we'll both just watch it closely.

Now we just have to wait and see how this all turns out in the next week or so. He has quite a few more visits over the next couple of weeks so I'm sure there will be more news to share.

Thursday, May 22, 2008

More medical woes - will it ever end?

You’d think that when a doctor writes a prescription, and when a pharmacist fills it, that SOMEONE would think to let the patient know there are possible serious side effects to the medication if mixed with certain things. Most people with an iota of common sense know you don’t mix alcohol with different things, but we’re talking about an antibiotic here. Not just any antibiotic, but the wonderfully expensive Zyvox that Ron is on.

We were told by the prescribing doctor that he couldn’t take Cymbalta or Zyprexa while on this but not given any clear “this might happen if you do” instructions. Ron has diligently stopped those medications.

They did not tell us that also different foods could cause a problem, such as dangerously high blood pressure. The list of foods to avoid includes pickles, anything else fermented, cheese, any alcohol (no problem with that one), chocolate, plums, and grapes. I’m sure there’s more but that’s what I remember off the top of my head. Ron’s had all of these (except the alcohol) at some point since he’s been taking this and several of these items in the past 24-48 hours.

His blood pressure was 205/92 while resting in bed this morning. He doesn’t feel good and is pretty discouraged about how badly he feels. He was feeling pretty good up until about a week ago. The doctor advised him to increase his diuretic if his blood pressure is up. I’m not sure how that will help but we’ll try it.

On a good note, his creatinin, potassium, and sodium levels are within normal range. But, his Vitamin D and something else secondary to that are out of range. The Vitamin D is very, very low and the other one is very high. When I looked up Vitamin D deficiency on the web, it listed furosemide (his diuretic) as potentially one of the causes of these two problems. So now we’re at a cross-road – does he take it to help lower his blood pressure or should he not because it might be a cause of his Vitamin D and hyperparathyroidism problems? I hope we get some answers tomorrow at the kidney specialist’s office.

He’s also got a really large bruise-type of thing on his left arm that may be caused from all the blood pressure readings he's had. I noticed it a week or so ago and it's grown since then. So I mentioned so the doctor and she is having it sonogramed tomorrow morning to see what it is. I think it's really just the bp cuff. He's had his bp taken so many times in the last few weeks, all from the same spot.

I’m so thankful that I’m off tomorrow. I’ve got a 9:15 appointment (to see how much weight I’ve lost in the past month, plus a re-check for this crazy cough that won’t go away), Ron has an appointment at 10:15 for an echocardiogram, but since the same person doing that is who will do the sonogram of his arm, he’s going to go in at 9:15 also. Luckily, we’ll be at the same medical facility, just in different portions of it. Then at 2:30 he has an appointment with the kidney specialist. This is a $60 week for co-pays but only 2.75 hours in lost wages, so that’s saying something.

Next week his appointments are all on the same day. Wednesday at 7:30 he has a thallium stress test, at 11:15 he sees the infectious disease doctor, and at 1:30 (or whenever we can get there) he sees the foot specialist. It will be a $60 day in co-pays plus the eight hours of lost wages for me. I am not going to like my next paycheck. Ugh!

I will be so glad when this is all over. I just pray that I’ve still got some sanity left by then.

Food and Weight - quite the subject!

I think I've managed to lose about 15 pounds following the eating plan I've laid out for Ron. Monday was a really hungry day for me though. I had the munchies but refrained from purchasing anything from the vending machines. Nothing tastes as good as being thinner (and healthier) feels. I have to just keep reminding myself of this when I get an overwhelming urge. It doesn't happen often and it passes quickly (usually). It helps if I go grab a cold glass of water.

When Amy and I went to the store on Sunday I happened to find lamb shoulder chops. I've never fixed lamb before but I knew that we liked it when we've had it in restaurants. I bought it and fixed it Monday night. I seasoned it with some olive oil, parsley, thyme, and rosemary plus a little bit of black pepper and Mrs. Dash table blend. I let it set in a baggie for about 30 minutes and then I grilled it on the stove. Amy, Isaiah, and I thought it was great. We were really surprised that Isaiah liked it so well. He asked me what it was and when I said it was lamb, he said "I love lamb." I also took new red potatoes and cut them in half to bake. I put them in my microwave pressure cooker with all the same seasonings that I put on the lamb and they were yummy. I made asparagus to go with it for us and Amy made broccoli for herself. Isaiah doesn't like either of those but we got him to take a couple of bites of the asparagus by telling him it was the same thing as Junior, one of the characters from Veggie Tales (that's one of his favorite DVD shows). Ron ate the vegetables but not much of the meat. I liked it so much I brought leftovers for my lunch twice this week.

Tuesday night I fried catfish nuggets, fixed the same kind of potatoes, and fixed some frozen artichoke hearts. They were nasty and very bland so they hit the garbage disposal. I even tried spicing them up with Mrs. Dash and that fake spray-on butter. No dice. They needed SALT, which we weren't having. Again Isaiah surprised us by eating a bit of fish. In the past he’s refused to even put it to his lips (except for the times I’ve told him fish sticks were chicken nuggets. Oops…). He ended up eating a couple of the bigger nuggets, which was great.

I'm finally below my first “goal” weight. LOL, I was just 0.2 below it, but that counts all the same. I had been holding at 0.6 over that goal for days and was really getting antsy to have that scale drop down a bit more. It’s been hard to not snack on things. (Amy made brownies this week and I didn't eat any until last night, and then only a small one. But I had another one for lunch today.) I'm not sure exactly how much weight I've lost in the last month; I'll find out tomorrow at the doctor’s office. I’m very pleased with what I’ve accomplished. Taking this just a little bit at a time is what is going to work. My goal is to lose another 15-20 pounds by the time Shaun and Jenny get here in July.

I know the healthier eating is helping me (and Ron). My cholesterol went down from 380 to 189, which is wonderful, and my triglycerides were 125. My Hemoglobin A1C was up from 6.5 to 6.9, but I attribute that to the amount of stress I’ve been under for the past three months.

I'm still coughing and have been since August. I've been on antibiotics, had prescription cough medicine, had prescription asthma medicine and I still cough. I’m glad I decided to go back to the doctor tomorrow and maybe she'll have some other ideas. This lack of sleep is sometimes very hard to deal with. Plus, the sinus drainage during the day is awful and I sound terrible. I have to leave the area several times a day just to clear my sinuses.

Other than the coughing, I feel good and I've got plenty of energy. I think I'm dealing with Ron's health issues quite well and don't feel stressed about him at all. I still struggle to keep a positiveoutlook concerning finances but I know that God is taking care of us and has His hand on our lives. As long as I keep my faith and trust in Him, I know we'll be fine. We've been very blessed throughout this whole ordeal.

Sunday, May 18, 2008

And so it continues

On Wednesday Ron's foot was nice and pink - kind of like a good package of hamburger (sort of graphic, but that's what it looks like). The nurses said that's what they want to see and if it was gray they'd be concerned that it's not getting good blood supply.

They had a hard time getting a good suction on the wound vac and Wednesday evening I had to retape it. If the machine is sounding like bull frog, there's a leak somewhere. You want the machine to run as quietly as possible. After I added more tape to his foot it ran almost entirely without making any noise.

The nurse who usually comes to change his dressing was not available on Friday so someone else came out. She told him that his wound was gray in color (where it had been nice and pink on Wednesday) so he got worried about that. So… I had to call the on-call nurse yesterday because he’d worked himself up into an anxiety attack over the whole thing. She had me take the wound vac dressing off and just put on a wet-to-dry dressing. That’s just wet 4x4 pads on the wound and then covered with dry pads and wrapped in gauze. I was able to get the wound to pink up by washing it with a wet 4x4 pad so that was a good sign. When I called her back this morning to report how it looked she wanted me to keep the wet-to-dry dressing on and let the doctor look at it in the morning. The wound vac may have had too much pressure being exerted on the wound because he’s not draining as much fluid any longer. Maybe tomorrow the doctor will decide he doesn’t need the wound vac any longer and we can send it back to the company.

I don't know. It does sound kind of strange that it went from a good pink to a gray color in just a couple of days. Yesterday and today Ron's not felt very well and I think he's dehydrated. He decided to cut his Lasix in half from 160 mg twice a day to 80 mg twice a day. His skin looks very dry and he was getting some muscle cramps. As long as his weight is staying down and he doesn't swell back up again, then it's good to get the Lasix dosage down. Too much for too long can cause kidney damage and we don't want that. He has enough problems with that without any help from medication.

We shall see tomorrow what the doctor has to say.

Update on the foot

We finally got some encouraging news on Ron’s foot. He had two tunnels (we had only been told about one but I read in the doctor’s notes that he actually had two) and only one of them was healing. Now it appears as if they’re both shrinking in size. Ron’s also dropped nearly 40 pounds since he went into the hospital on March 22. He’s finally had a wake-up call and has decided that he’s going to do whatever it takes to get himself back mobile again and healthier. He said it may be too little too late but he’s going to give it his best shot.

The kidney doctor really gave him a talking to the last time we were there and said that his current lifestyle was killing him and that his prognosis was not good if he didn’t make some changes. He has really gotten with the program since then. He’s on maximum of 1,000 mg sodium a day (that’s hard and some days he goes over but never over 2,000 mg), 32 oz fluid a day (again, sometimes a bit more but no more than 64 per day), and low potassium. That is a bit harder to do without checking the potassium list all of the time. I do know some things that are higher and he’s not eating any of those.

Since he’s not been taking as much medication lately he has gotten a lot more “clear” in his thoughts and talking. He said his memory is coming back and he feels like the fog has lifted. He said he didn’t realize how foggy he’d been for the past several years and I know it’s from pain medication. He’s not on any narcotic pain meds any more and just has a pain patch that’s supposed to be replaced every 3 days but I only do it once or twice a week. He’s on a new medication, Lyrica, that’s specifically formulated for peripheral neuropathy and that seems to be helping him a lot.

Speaking of medication, he’s also on a new oral antibiotic. He’s got MRS-E so the infectious disease doctor discontinued the Minocycline and added Zyvox (Linezolid is the formula name), in addition to the Flaygl (Metronidazole) that he’s also taking. He asked if we had good prescription drug coverage and I said we did. He said this was quite expensive and a lot of companies refuse to pay for it. I asked if it was something I could buy outright and then file major medical claim on and he said no, that it was thousands of dollars. I just about dropped my jaw on that. The nurse called and got it pre-authorized before he’d even write the prescription for it. Our cost for a 2-week supply was $30. Insurance cost was $2,109.21. That’s unreal. He’ll be on it for two cycles so that’s over $4,000 for a one-month supply of medication (the IV antibiotics were over $20,000 for eight weeks). While he’s on Zyvox he’s had to quit taking Cymbalta and Zyprexa, which were both prescribed for peripheral neuropathy. The Cymbalta is an anti-depressant by design and by chance they discovered that it helped some peripheral neuropathy patients (I don’t know what Zyprexa was for initially). Ron had been on Zoloft for a long time, so they discontinued that when the Cymbalta was started. Since he’s not on Cymbalta right now, he’s very emotional. Everything, and I do mean EVERYTHING makes him cry. We tell him that he’s having a “Kleenex moment” and that it will pass. I was teasing him the other day and said, “This Kleenex moment brought to you compliments of no Cymbalta” and it’s stuck.

He is feeling so much better though and getting around the house more on his scooter. He’s still supposed to keep his foot elevated most of the day but he’s washed up some dishes and washed two loads of laundry. That was a big help just in itself.

He was feeling so bad about his condition and the fact that he’s ignored my urgings for the past several years to change his eating habits and way of life that he made me a promise that he’d do what it took to get back to where he should be. I don’t know if he’ll ever be healthy enough to return to work but he said if he does improve enough to do so, he wants to. He said he’d had a taste of sitting around all day and he’d rather not do that.

His next appointments are Monday with the orthopedic doctor and next Friday with the kidney doctor. The next week he has a stress test and echocardiogram on Wednesday morning, followed by an appointment with the infectious disease doctor. Then, the first week of June he has another heart test and I’m sure after that we’ll be hearing from the cardiologist about Ron going back in to see him. With the cost of gasoline on the rise it’s sure biting into my monthly budget. I’m putting a lot of miles on my car driving to and from doctor appointments.

Oh well, you do what you've got to do for those you love.

Sunday, May 4, 2008

The Wedding

My niece got married this weekend and it was a lovely wedding. They literally put it together in 12 days. Fortunately, they had partially planned this wedding two other times but the groom called it off each time. This time, he went through with it. The funny thing about this, May 3 had been the original date all along but when he called it off the first time, they canceled that date. Then when he re-proposed they set March 29 as the date. It didn't take too long to call that one off, too.

He got right back with her within days of calling off the wedding and they went back out behind his family's backs. He wouldn't admit to anyone that he was seeing her again or anything - until she turned up pregnant. Then all of a sudden his family thought they should get married, that she was great "wife" material and how much they really liked her. I think they want access to the baby, and I don't blame them. As a grandparent I would not want to be in their shoes.

The new husband leaves for the Marines in a week so she'll spend most of her pregnancy alone. It's not a fun situation to be in and I don't envy her at all.

Although the bride was beautiful, the bridesmaids were lovely (Amy was maid of honor), and the reception was nicely done (she had a dessert themed reception), the real star of the whole show was Isaiah. Everyone thought he was adorable. He was the ring bearer and he looked so handsome in his suit and tie.

He started up the aisle and suddenly stopped once he saw everyone. He was taking very slow steps and I thought sure he was going to stop and cry "Mommy!" so she could come rescue him. My sister told the groom to get Isaiah's attention and maybe he'd come up the aisle to him. Bryan stooped down and Isaiah finally walked up to him. He did a good job standing there with the bridal party. When Brandy turned toward the altar, Amy started to straighten her train. Isaiah also leaned down to straighten it (which they got in the pictures) and then looked at Amy and said, "Thank you mommy." He thought she was helping him out.

Then he said he was done and went down to set on my sister's lap. After all of the pictures he came over to the reception hall and had some fun with the bubbles. He wanted to blow out the candles on the centerpieces and my sister-in-law let him. He said he wanted to make a wish so he folded his hands like in prayer, leaned his head down with his eyes closed, and then blew out the candle. He did that for ever candle he blew out. Everyone thought it was so cute.

Then the bride and groom had a dance. Isaiah decided that he was going to dance, too and got a little 4 year old girl to dance with him. I got a good picture of him giving her a hug. It was sweet.

He caught the garter AND the bouquet. The garter was thrown to him on purpose and the bouquet he just happened to be in the right place to catch. He gave the garter to the best man and the bouquet to the little sister of the groom.

I'll try to post some pictures tomorrow after I get them downloaded.

Thursday, May 1, 2008

Isaiah got a haircut...

And he didn’t cry or fight it. Now that might not seem like a very big deal to people and some would wonder why he’d fight it or cry anyway. With Isaiah’s condition comes hypersensitivity to sound and to touch. The sound of the clippers and the feeling of them gliding across his head are just about too much for him to bear. It is physically painful for him to experience these sensations.

His mom rewarded him with a new puzzle for being so brave. He loves puzzles and does a great job on putting them together.