Wednesday, March 24: Day 27, Looking up

Today’s lab and clinic was more encouraging than the last few. We stopped by the wound clinic and learned how to care for Dan’s incision site (details of which I won’t go into except to say it just requires more attention than it did last week). Monday, the surgeon thought it looked superficially infected, but today the nurse at the wound clinic thought it looked pretty good. We will continue to visit the wound clinic once a week or so until things are mostly healed. I feel more confident in how to care for the site now that I’ve had actual instruction. They also provided us with specialized supplies — one item was interesting to learn about: it’s called Kaltostat and it’s a fibrous spongy material made of seaweed and helps to protect the site from infection. Dan and I couldn’t decide if it was high-tech or low-tech — maybe nature-tech. The nurse there encouraged Dan to eat lots of protein, vitamin C and zinc – all to promote healing.

Dan’s creatinine is down a bit today, which is good. It probably won’t go any lower – everyone’s levels are different because of the way individual bodies process it. The more muscular you are, the higher (generally) your natural creatinine level is — although if it gets too high then the docs will want to check you out for kidney dysfunction. (The creatinine itself is not toxic or anything: it’s just an indication of how well your kidneys are flushing it out of your body, because your body continually produces it.)  Dan’s got as high as 10 pre-transplant, and it’s now below 2. The doctor told us about a professional basketball player that he knew about with a pre-transplant creatinine level that was higher than 19, so you can see how it can vary from person to person.

The doc surprised us today by announcing that Dan only needs to return to the lab and clinic once per week — and we were previously at three times per week! So that is very good progress. Dan is much relieved, as the higher creatinine levels that we saw last week (when he was dehydrated) could have been an early indication of kidney rejection. At 6-8 weeks after the transplant, Dan will go in for a kidney biopsy – this will tell the doctors if there is any sign of rejection that might not be visible in the blood tests.

Oh, and I almost forgot: the episode of gout is over. No more pain or stiffness. Don’t want to see that again anytime soon!

In other news, tonight Charlie basically told me, “I’m an inventor, mom. Why doesn’t anyone let me do experiments?” So I told him he could pick out a couple of experiments from his chemistry book and we’ll do them this weekend. He replied that he wants to make up his own experiments. I’m a bit afraid of what he might come up with – but most importantly I’m wondering if I will be able to modify the initial experiment design into something safe and easy with materials I might actually have in the house, while not upsetting yon young Edison.

Before he went to bed, he wrote a short story on a piece of paper. This is how it reads: “Once upon a time there was a mom. She had 3 childrine. Their names were: Betsy, Hanna, and Rabeka. They went out into the woods! And they stead there for the rest of their lives. The end.” I asked him if it was a good thing or a bad thing that they stayed in the woods, and he said it was good because they loved the woods. He described himself the other day as a nature-lover, and after asking me what being addicted to something means, he stated that he was addicted to nature. What an amazing young man we have – we are so proud of him. I’m so happy that he isn’t afraid to ask us anything, and he really listens to the answers and is so curious to learn. I can’t wait to see if he does turn out to be an inventor, or an engineer, or a teacher, or ?

Short story
Short story

This is a picture that he drew (by making sure he had the correct crayon for each shade) right after Dan taught him the “ROY-G-BIV” mnemonic to remember the colors of the rainbow:

Red, orange, yellow, green, blue, indigo, violet
Red, orange, yellow, green, blue, indigo, violet

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Friday, March 19: Day 22, Watching

Yesterday Dan had to go in to see the doctor because he had a mild fever and of more concern to his docs, he had some pain in his shoulder. I think Dan was more worried about the fever, but the docs wanted to see him in the office because they were concerned (we learned later) he may have thrown a blood clot to the lungs. The good news is that it was an episode of gout (and not anything worse). The bad news is that it was an episode of gout (and very painful). So, some medications were adjusted and Dan was sent home. This morning his shoulder was only a little painful but still didn’t have a great range of motion and is still pretty stiff. It should resolve itself in a few days.

This morning’s clinic was not as good as previous ones. Dan’s creatinine was a little higher than it was on Monday, but his weight was also down quite a bit. The combination leads his doctor to believe that Dan’s just not drinking enough water, so Dan must drink a lot more water and more interestingly, *not* stay away from salt. He has tried to avoid salt for years, ever since he was diagnosed with kidney disease, so it was just a little different for Dan to be told to go out and have a bit of salt.

Dan’s wound drainage continues to make things bothersome. His surgeon came by during clinic and examined the incision. He also did a little procedure to open it up a little to encourage the draining. I didn’t really want to watch while this was happening, but there wasn’t a whole lot else to look at! Oh well, if nothing else perhaps I am getting a little hardened to the sight of such things, which might help *if* (not *when*) Charlie ever comes running in with some huge cut on his arm. Which reminds me of a story about myself when I was middle school age and had a little injury to my finger that did bleed a bit. I ran into the house and wouldn’t show my mom because I thought if she reacted in any way to how horrible my owie was, it would make me panic. So I showed it to my dad, who took one look, wrapped it in a washcloth, and drove me to the hospital. Sooo…..back from memory lane now. Where was I?

Oh yes. The surgeon did say that there didn’t seem to be any sign of infection and the tissues look good, but informed us that in patients he’s seen with excessive drainage, he ends up in the operating room with a third to a half of them. We are to watch the wound, watch for signs of a fever (Dan’s temp seems to be fine as I write this), and keep everything nice and clean and bandaged. This afternoon they did an ultrasound. They are pleased that the fluid build-up is smaller than it was a week ago. They are also happy with the blood flow to the new kidney, and confirmed that there are no blockages that may be causing problems. Overall, we are encouraged by the results. Dan is annoyed by the draining, and a little worried about the small chance for a second surgery if he does end up with an infection. But we’ll just take things slowly, listen to the docs, and keep an eye on everything.

Last night we attended our first Little League team meeting. Charlie is now a Giant – since he’s a rookie this year, he doesn’t have the complete baseball uniform but does have a cute orange t-shirt and a Giants cap. Thankfully we have one mom who’s been with the league for seven years and volunteered to be “Team Mom”. She can direct the rest of us, who are first-timers and have no clue what is going on. We learned that instead of keeping a list of which parent is bringing snacks each week, they encourage parents to buy “scrip” at the beginning on the season, which they hand out to the players at the end of each game so they can buy their own snack at the concession stand. I’m reserving judgement until I see what’s for sale, but I have an image of kids buying sodas and candy bars instead of the more healthy snacks that the parents brought to the soccer games last fall. The parents are also expected to work three shifts at the concession stand. Good thing I’m a cash-register guru. I volunteered to be the parent who organizes the kids into batting order and helps get each one ready to bat as their turn comes up. I have to pay $2.00 for a background check since I’ll be an official league volunteer. Which makes me ask myself: what kind of background check costs $2.00?? When it comes to checking someone’s criminal history, I’d rather pay for the deluxe search rather than the bargain cursory lookup. Okay, okay — I’m sure it’s fine. Remember, I am a little league newbie here, so what do I know?

First Little League team!
First Little League team!

And I have to mention that I am over here groaning about Obama’s speech today about the healthcare bill. I am completely fed up with the politicking and spin and playing to the camera, by EVERYONE (not just the President). It might surprise you, but there are at least a few insurance companies (like the non-profit that I work for) that actually want to *improve* things. *sigh*

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Tuesday, March 16: Day 19, Feelin’ groovy

Today things are feeling more like “normal”, for everyone. Yesterday Dan told me that he doesn’t feel so much a “patient” anymore, but is feeling more like his old (but much improved) self. For me, today at work seemed like a regular day and I didn’t feel like I had a to-do list longer than Santa’s. For Charlie, he is just happy that he’s lost his latest wiggly tooth and he doesn’t have to worry about it affecting his eating for the time being (the next tooth has already started its wiggly dance but isn’t annoying yet).

Yesterday, Dan had a great clinic. His staples were removed (surprisingly painless), he was told that he only has to go to clinics twice a week now, and his creatinine continues its descent. It felt like we’d reached another kind of milestone, so we celebrated by getting Dan his much-deserved chocolate milkshake. Way to go, Dan! His doctors are still watching the incision site, which continues to drain a bit, but it should resolve itself with time. Hmm, there should be a rule against putting “milkshake” and “drain” in the same paragraph. Sorry!

Mmmm....
Mmmm....

Hopefully Charlie will continue to get used to the new-ish routine. He’s been prone to whining lately, and told Dan yesterday that he can tell that good news is not on the way when I start a sentence with “I”ll tell you what…”. Personally, I think that you can’t really tell if it’s good or bad news when I say that. Half the time I find myself negotiating with him without even meaning to. Kids would make great attorneys. He has Spring Break next week and his daycare has planned a slate of fun activities and field trips that he’s been looking forward to. Oh, and T-ball will be starting soon. Charlie’s going to be on the “Giants” team, and we’re attending the first team meeting this week. I just want a photo of him in that cute uniform!

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Sunday, March 14: Day 17, Taking it easy

By my reckoning, Dan is on the 17th day with his new kidney. He reached a milestone yesterday: because he’s not taking mega-doses of Prednisone any longer, he can go out in public without a mask! He still carries one in case we encounter coughers or sneezers, but all in all it’s easier for him now. He will continue to taper down on the Prednisone and I believe he’ll be done with it by the end of this week. He still needs to take his anti-rejection meds twice a day, and his thrice-weekly lab results will indicate if the dosage is right. It’s amazing, really, the small mountain of pills that he’s taking. He’s quite the expert on taking them all at once.

Some of the things on Dan’s wishlist: being able to take a bath, drinking a big chocolate milkshake, and driving to the coast.

We’ve been to a few more clinics since the last post. Dan’s creatinine is now below 2, which is very good. His doctors are closely watching his wound area – it’s not infected but continues to drain. It’s good that it’s draining and there’s no fluid collecting inside, but it’s bothersome to deal with. The docs even ordered an ultrasound on Friday (which went well) to make sure the kidney and wound area look okay and they don’t seem overly concerned —  but in case there’s an infection building in there somewhere, they are very watchful and want to know right away if Dan’s temperature rises over 100 or if he gets the chills or feels poorly at all. The hour-long ultrasound made for a very long clinic visit. We were there from 7:30am until almost 1pm.

Thank goodness for the weekends, when we can all catch up on some sleep, prepare a few dinners for the coming week, and clean up the house. And thank goodness for my mom, who let Charlie spend the night with her on Friday to give us a few hours of downtime. Charlie continues to do very well with our new schedule, but I’m not able to spend as much time as I’d like with him on his homework. I know, homework in kindergarten! All I know is that he is very ready for first grade so I am not overly concerned about him being late with a few assignments.

Happy Pi Day (3/14) — which reminds me that this year Charlie’s birthday is on 10/10/10, which is way cool.

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Monday, March 8: Two clinics done, feeling very thankful

Friday was Dan’s first lab and clinic, and today was the second. The creatinine continues its descent: today it was 2.53 (down from a high of 10). Dan hasn’t seen a number below 3 in at least ten years. This is a good indication that the kidney is functioning well! Dan’s blood sugar is slightly elevated but he is still managing to avoid the insulin injections that a full-blown diabetic requires.

The clinic is an interesting place: the waiting room is filled at 8AM. Half of the people there are wearing masks to protect them from the other half — mostly significant others who are doing the driving, carrying the daily ledger, and providing moral support (and making cafeteria runs for those who must take their medications during the clinic wait. Gotta take those meds with food). This transplant center must be doing a booming business to have so many transplant recipients being monitored at once. “When did you have YOUR transplant?” is a question commonly heard in the waiting room, but since everyone is wearing masks it’s not like you will remember who you were talking to. Well, maybe you will. You can still see people’s hair and eyes, and then you’ll see them again on Wednesday (and Friday, and Monday, etc.).

Dan feels good – very energetic – so I am trying to make sure he doesn’t overdo it. He still needs his pain meds, but he is getting outside a bit for one or two short walks per day.

I was going to post a link to a recent article in the Oregonian, but after reading the online comments I really don’t want to send anyone over there. The content of the article is fine…it’s the ignorant idiots who ruined it by posting their comments without thinking for themselves or doing any research to figure things out on their own. Yeah, yeah…freedom of speech and the community of the internets and all that…sure. But the issues surrounding healthcare reform are so complicated that the one or two knowledgeable people who post comments are drowned out by the hundred who have no clue.

So anyways, the article is about this woman who received a transplant at about the same time Dan did, and how her husband’s employer isn’t able to provide health insurance coverage for his employee’s families — only the employees themselves. But the employer, a vintner, still wants to help out so he created a special vintage of wine and is selling it to raise money for the woman’s anti-rejection medications. One of Dan’s doctors is quoted in the article — he’s an absolute patient’s advocate. I’ve seen him in action and he really fights for his patients, to make sure their best interests are taken into account (by an insurance company in our case — NOT the one we are currently covered by). It’s a good feeling to know that your team of doctors really cares. And that you have health insurance (not-taking-our-insurance-for-granted-and-trying-to-be-good-healthcare-consumers-and-hoping-we-continue-to-have-insurance).

Please Congress: we need healthcare reform NOW — not sometime in the future if and when you get your act together.

Don’t get me started about this topic…maybe another time. Getting off of my soapbox for now.

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Charlie’s Poetry Night – 2010

[Video to be added soon]

Here is the video I mentioned in my last post. Charlie selected two poems from Shel Silverstein, but the first one tickled his funnybone and he had a little trouble finishing. I love to hear him laugh.

Here is the poem (take a guess where he kept laughing):

Crowded Tub

There’s too many kids in this tub
There’s too many elbows to scrub
I just washed a behind that I’m sure wasn’t mine
There’s too many kids in this tub.

And here’s the second one:

Channels

Channel 1’s no fun.
Channel 2’s just news.
Channel 3’s hard to see.
Channel 4 is just a bore.
Channel 5 is all jive.
Channel 6 needs to be fixed.
Channel 7 and Channel 8-
Just old movies, not so great.
Channel 9’s a waste of time.
Channel 10 is off, my child.
Wouldn’t you like to talk a while?

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Thursday, March 4: On our own at home

Dan is getting into the routine of medications, taking blood pressure and temperature readings, and not doing any lifting. So far, so good. He goes into the clinic for labs tomorrow morning for the first time. He’ll give blood, then he’ll need to wait around for about 2 hours while they get the results and determine whether his medication dosage needs to be changed. I’ll take him to these labs three times a week for two weeks, then two times a week, then once a week, and then every other week — depending on his lab results, of course, but that’s the plan. At three months, the transplant center will consider him “graduated”, take his success photo, and then they won’t need to see him again but maybe once or twice a year.

Dan accompanied me on a little trip around Gresham to run some errands during my lunch break. He wore his surgical mask in Walgreens, where a medical supply salesman stopped us and sold us a box of those masks out of his van. It sounds so odd, like: “Hey lady! You wanna buy a watch?” I’m still trying to decide whether or not to actually use them. I mean, who was this guy? He has a medical supply store in Oregon City, and I’m sure he’s legit, but there’s some skeptical part of me that’s not entirely convinced.

This evening was the big Book Fair-Poetry Reading-Sock Hop at Charlie’s school. Yeah, I know. I was wondering too, how they were going to do all of those things at once. It was utter chaos, but the kids sure had a lot of fun. Dan didn’t get to attend, but I took some video that I will try posting here soon. Charlie’s been waiting for Poetry Night since last year’s event. He was only in Pre-Kindergarten and he got up in front of a room of almost total strangers (he was new to his school at the time), and read a poem with a buddy. Such professional microphone skills! So tonight he picked out two poems by Shel Silverstein and waited an excruciatingly long time while the other kids read (with music/dance breaks after every three or four readings). Finally, it was his turn. He walked up on stage, sat down on the stool, and whispered to the teacher in charge that he wanted to read two poems and was it alright? He took the microphone and introduced himself, and then started reading the first poem. He only got to the second or third verse before he cracked up laughing, which was totally cute. He kept trying until his mommy, in somewhat of a panic because the camcorder was running out of film, suggested that he try the other, less funny poem. He read it, and then came back to the funny one. And finally made it through. What a trooper. I’m so glad his school puts on an event like this, because it showcases how important reading is, and makes it fun for kids to get up on stage and have some fun with their favorite poems. Oh, and dance in the disco-ball-lit darkness. While the parents tried to navigate the tables of books for sale at the book fair. Did I mention the squealing and conga lines? It sure was fun. We missed you Dan, but it’ll all be there on film.

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Tuesday, March 2: Day Five, High five

I visited with Dan at lunchtime today, and he said that there is some talk of letting him go home maybe as early as tomorrow (Wednesday)! His creatinine is lower, which gives an indication that the kidney’s filtering superpowers are starting to kick in. Very good news! He is walking the halls as much as he can, although it does make him tired and he feels some pain from it. The nurses are encouraging him to get exercise but not to overdo it…his body will regain strength more quickly.

Transplant Services, 4th floor, Good Sam Hospital
Transplant Services, 4th floor, Good Sam Hospital

His blood sugar is holding fairly steady, which has surprised the doctors (in a good way). Usually (like 99.99999% of the time) when a patient is taking oral medication for diabetes prior to a transplant, they develop full-blown diabetes that requires insulin injections. So far, Dan’s bucked the trend — he’s hoping they’ll write a journal article about him. :)

He would really, really like a chocolate milkshake. (Watching the Food Channel is fun, but you end up with a lot of cravings.) However, he needs to avoid any added sugars right now until his medications level out and his body defines a new “normal”. So maybe in a few weeks we’ll take him out for his treat. He’s also starting to do some travel planning for the summer. We have had to stick very close to Portland for the last several months, since Dan’s been on the “active” transplant list, so we’ve had to put off trips to Seattle, the Oregon coast, and Arizona. We hope to do all of these things sometime this year, as Dan’s doctors give us the go-ahead.

Thanks again for all of your support. I’m hoping that the next update will show a photo of Dan in his comfy recliner at home.

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Monday, March 1: Day Four, Look ma, no tubes!

Today I was happy to see Dan in a little cheerier mood than yesterday. He sent me a text first thing this morning with the encouraging news that his labs were slightly better. When I visited him at midday, the nurse from the transplant center was explaining How Things Would Be once Dan gets out of the hospital. When to call the doctor (a fever of over 100, for example), when we don’t need to call, when to have his labs done, how they will remove the staples (actually, it *is* kind of like a staple remover tool, but way less ouchy than using the one in your office desk). He’ll need a couple of kidney biopsies later on down the road so the docs can look for signs of rejection – this was not very good news for Dan, seeing as how the first biopsy he had was so painful. Apparently these will be less painful because they won’t need to go through all of the back muscles like the old kidneys, but then again they might just be saying that. I guess we’ll find out! He also met with the pharmacist, who provided a list of medications that Dan will be taking for the foreseeable future. It’s actually a shorter list than the medications he was taking pre-transplant, which was nice to see.

Elevator directory

Dan’s blood pressure is better today — really good news for the kidney as it needs that good blood flow to get into full gear. He also had a nuclear imaging test (very claustrophobic, lying still for 30 minutes) so they could get a clear look at that blood supply.

Some other stuff that made Dan’s day: he was able to finally take a shower, and they unhooked all of the remaining wires and tubes, so he is free to roam about the floor without his trusty wheeled IV cart. Yay! He still has a central line, although it’s not hooked up to anything. They will use it for blood draws, and if he needs any more IV medication.

Dan has managed to avoid dialysis again today — also good news. He says that he can tell he’s improving by 1) the way he feels, and 2) the food keeps getting better. He was able to eat potatoes, a banana, and orange juice — all food/drink from the forbidden list pre-transplant.

He does now have a sweet little netbook to surf the net, but the hospital’s network speeds are not all that great. Still, I pointed him to Pandora (radio) and Hulu (TV) as places he can check out when he is bored (notice I didn’t say “if”). I’m hoping he’ll show up here and post a few entries of his own. Hi Dan!

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