Sunday, May 31, 2009

Soon, we will have food

Peas blooming and tomatoes too. Fresh fruits and veg can't be far around the corner now. I have high hopes for the tomatoes this year. They get at least 10 hours of sun a day which even in our maritime climate ought to be enough.

Happy News!

Will just tested his lung functions on the home machine and he has bounced back to an FEV 1 of 2.25; up from the 1.8 or so where it's been hovering for at least the past month. This is really great news because it means that maybe with exercise and work he can recover all the way to his "old" baseline of 2.5 or 2.6 (which at his height, weight and age equates to about 50 - 55% of normal predicted lung function). Mostly though, however much further it comes back, if at all, it is really good news that it is not stuck down at 1.8, which means there probably hasn't been too, too much permanent damage, if any. (For me, this also quells the nagging fears of rejection which always accompany a significant loss in lung function.) So, we'll take all that and call it a good day. Will's theory is that the inhaled Colistin is more constricting than he realized and it was keeping his lung functions artificially low. (He went off the Colistin along with the other extra antibiotics on Tuesday.)

Photos are from last weekend. Liam's coffee table climbing adventures. We discourage this, but sometimes in the morning if I'm taking too long (i.e., more than 5 minutes) to fix my coffee, we will have an episode where Liam climbs on to the coffee table and then makes a racket until I walk in and tell him to "get down!".

Thursday, May 28, 2009

Bird book, home health care, and update

Liam is just now becoming old enough to look at books with paper pages instead of board books and be trusted to (mostly) not tear them. This is one of his current favorites and I really recommend it, the pictures are beautiful and it seems like all little kids are fascinated by birds.

In the picture you can also see Will's home IV medications (one hoked to the picc line and the other waiting by the computer). I didn't know Will before his transplant, but he tells me that home IVs are much easier now than they used to be as far as the equipment and all goes. No gravity drip. No mixing. Just hook it up to the line and away you go. You can also see Will's compressor for hypertonic saline treatment and other nebulized medications and the home sprirometry checker (on the bottom shelf).

Will's PFTs checked at the hospital were the same as what he has been measuring at home. Significantly down from what they were before this most recent illness. After 3 weeks on home IVs and nebulized Colistin, I know he is relieved for a break, and he feels okay because the IVs always really clear up his chronic sinus problems, but we're all pretty worried about his lung functions not bouncing back. He was at only about 55-60% lung function before this, so, there's really only so much room to maneuver. He will see the docs on June 8, so until then we just go on and hope things get better. If not, we can talk about whether there are any further treatment options to try to improve things, and, of course, what we might be able to do to prevent (or at least slow) any further decline.

Garden update

As promised. In the ground now are: carrots, swiss chard, peas, onions, lettuce (3 kinds), arugula, green beans, tomatoes (3 plants), strawberries, broccoli, cauliflower, a sunflower plant and today we added Thai and regular basil, and zucchini. I am ecstatic to have a garden again, even a really small one like this. Liam enjoys the garden, but hasn't shown much interest in digging yet. Mostly he likes to experiment with walking on the gravel, walking and stomping on the path, and climbing over the garden beds. In the photo he is watching with great interest as the lawn mowers work on the yard across the street.

Tuesday, May 26, 2009

We're still here, sort of

Busy, busy. That's what my friend Shane calls me. "Hi, busy, busy" he'll say "how about lunch, lunch." We're all fine, I've just been too busy or too tired to post. After I get back from Hanford later this week, I promise, there will be posts on:
  • Garden update with photos
  • Liam's tree climbing adventures with photos
  • Back yard patio creation project, which Grandpa DM is going to kindly organize and supervise for me. I need more project like this where I say: I'd like a patio instead of a weed filled strip and then just sit back and write checks. Yay! Hopefully there will be photos.
  • Will's progress with iv abx (no photos), and the short news is that he's still on them and has to drive all the way to Seattle today to have PFTs in the hospital machine because they don't believe the results on his home machine. Basically, his lung functions are not getting a lot better. The stopped getting worse and then came back a little and now seem to be holding around 20% less than what they were before this latest episode, that is FEV 1 of 1.8 or .9 something, down from about 2.5 or 2.6. Sucks big time and Will still feels like crap. Hard core iv abx are enough to make you feel like crap all by themselves even without the reduced lung function and discomfort and worry that brings.

More soon. . ..

Friday, May 22, 2009

What we ate last weekend

So, last weekend we ate our first tabbouleh of the summer. I mention this here because this weekend we may eat our second. It's meant to be sunny again. I used to make tabbouleh a lot during and immediately after my years at hippy-dippy college. I haven't made it in a long, long time but we got some quinoea in our farm basket a week or so ago and I remember reading somewhere about making tabbouleh with quinoea so, that's what I did. Here's how:

1. Chop up a bunch of Italian flat leaf parsley and a bunch of spearmint. I think that for 2 cups of raw quinoea (which is a lot cooked) you want at least a cup and a half of chopped parsley and three-quarters or a cup of chopped mint. Chop, chop.

2. Decide what else you're going to add and chop that up too. I always add tomatoes and feta. I sometimes but not often add cucumber. In college I used to add blanched green beans which is not at all traditional but which I thought was pretty good.

3. Squeeze one or two lemons, you want about half a cup of juice. Add half a cup of good olive oil, the kind you use to make salad dressing, not the kind you use to saute zucchini in. (Sauteed zucchini would be good in this too, I think.) Add some salt. This is the only salt in the whole dish, so you want to not mess around. A good 2 or 3 teaspoons of salt is not too much. Add some pepper too.

4. Cook the quinoea. This is easy, put it in a pot, cover it with cold water by about an inch, bring to a boil then simmer for 20 min or so until it is cooked. You might have to drain some excess water off; that's fine, don't freak out.

5. Mix, mix, mix everything together and away you go. It's great and even Liam eats it.

I did the math today and realized that pretty much since some time in April I've been away from home for work at least two and often three days a week. That's a lot of days and I'm tired. Next week is back to Hanford for two days and maybe after that I'll catch a break for a week. In this economy, I want very much not to complain about having (knock wood and at least through June) plenty of work.

Sunday, May 10, 2009

The Naval Officers' Wives to the Rescue

Mother's day brunch at our house today. We're so lucky to have both our mothers here in town. I spent more time than I care to admit this week looking for a recipe for punch. Somehow I got the notion there should be punch at brunch. But, everything is either full of booze or requires a simple syrup infused with herbs or spices or is just complicated and expensive looking. I'm sure they're all great, but they aren't what I was looking for.

Finally, I remembered the Naval Officers' Wives of Western Washington Entertain. Of course. I "inherited" this recipe collection from my mother. I think I rescued it from a garage sale pile 10 years or so ago. It's one of those collections where people submit recipes and someone types them all up and puts them in a book to raise money for a worthy cause or give as gifts. It's great for things like pudding cake, chicken divan (although the one in this book has mayonnaise, which I abhor, so I had to work out my own approach), and, it turns out, punch. Of the 25 beverages in the book, this is the only one with out alcohol. (If I remember my childhood correctly, those naval officers wives can put a drink or two away.) This punch is perfect. Basic, inexpensive ingredients. No added sugar. A lovely pink color. So, as a service to all humanity, here is the recipe:

1 12-oz can frozen lemonade concentrate, thawed
1 12-oz can frozen OJ, thawed
2 cups grenadine (this is what makes it perfect)
4 cans of water
3 quarts of chilled ginger ale
Juice of 3 lemons (I skipped this)

Mix it all up, chill it down, and you're good to go. Serve over ice. I cut this about in half and added extra ginger ale because ginger ale comes in 1 liter bottles which is more than a quart and a half and I didn't want a quarter of a bottle of ginger ale hanging around the house. Worked out fine. I can't recommend it enough. Thank you, Mrs. Jack Darby.

Friday, May 8, 2009

Pushing the box

Do you think that pushing a cardboard box across the porch is the kind of thing that could make you so happy? And, here's baby Liam, without a nap today and newly snotty from the start of his latest cold, delighted, just delighted to push the box around.

Today we played a new game. Liam pretends to be the dog, then he picks up his milk or his cookie (both are in the box he is pushing, maybe that's why he's so happy). Then we say "Silly. . .doggies don't eat cookies" or "Doggies don't drink milk." Liam thinks this is hilarious. We played for 20 minutes straight. It got so he would set his milk down and then grab it up and come running over and hold it out to me to be told "Doggies don't drink milk."

Sometimes he is doggie and sometimes he is Liam. You can ask him which he is. If he is being doggie he will "uhh uhh" at you (which is the noise dogs make), that's your cue to say "Silly. . .doggies don't eat cookies." Or, whatever. (We also had "Doggies don't sweep the porch.") If he is being Liam he'll point to himself.

Of course, poor Mollie the actual dog would give her left ear to eat Liam's cookie and drink up all the milk, I think. Would that she showed a similar interest in sweeping the porch.

Tuesday, May 5, 2009


IV Antibiotics. That's the plan for Will's current lung infection. It appears that the only thing growing in his cultures is the expected pseudomonas aeruginosa -- such a big problem for people with CF both before and after lung transplant. Turns out that Will's current pseudomonas is completely resistant to Cipro. So much for the high-dose Cipro. So, now Will will be on meropenem and aztreonam by IV every 8 hours and (still) the inhaled Colistin and HTS. Quite the regimen. Hopefully it works and he'll start to feel better soon.

I have to go back to Hanford tomorrow, leaving around 5:30 AM, so Liam is at Will's parents' tonight and tomorrow night. The house is sure quiet without him.

Sunday, May 3, 2009

Not so good news on the health front and pic-nic breakfast

Will checked his spirometry (lung functions) today on the little home machine. Bad news. The functions are not recovering, they are in fact down from what they were last Monday. Saturation also is not great, in the mid (occasionally) and lower 90s and upper 80s. Whatever is going on is still going on. This sort of up and down, is just so typical and so frustrating.

Tomorrow he will call the clinic and talk about what to do next. Last Monday the idea was that if he didn't start to get better on high dose Cipro and inhaled Colistin they would go to IV antibiotics. It may be that they will know something more about what the infection is sensitive to from the cultures and can adjust accordingly.

Poor Will, he looks like he feels crappy; he's tired and short of breath and worried. I hope the clinic can help sort things out tomorrow and that if he does have to go in to the hospital at least it won't be through the emergency room.

Other than Will feeling crappy, today was okay. It was crazy sunny this morning, so Liam and I had a pic-nic breakfast on the porch. Then playing, then grocery store (which Liam always enjoys), lunch, nap, more playing, a good dinner and then (big fun), a friend of Will's brought us a rhubarb plant for the yard, so the day ended as it began, outside. I am trying to help Liam and Mollie learn to be better with each other about food. (Mollie not to be grabby of Liam's food; Liam not to give food to Mollie.) So far, the results are mixed.

Friday, May 1, 2009

How to play loud voice/quiet voice with Daddy

First get the notion to play. It's a little boring here at the table after dinner. Use your loud voice over and over until Mommy says "Liam, that's a loud voice! Let's try quiet voice now please."

Use your quiet voice -- this involves just moving the mouth and sort of blowing air out of it; almost no actual noise. When Mommy doesn't notice right away (it's easy to miss) use your LOUD voice again and laugh hysterically when Mommy says "Loud voice!"

Become beside yourself happy when Daddy decides to play too.

Look with wonder at Daddy's quiet voice.

Laugh hysterically when Daddy says "loud voice!"

Important game playing note: only Mommy and Daddy say the words "loud voice" and "quiet voice" and quiet voice is used most often because "loud voice" spoken loudly can be a little scary sometimes. Liam uses "de de!" (which also is what the birds say) for loud voice/quiet voice.