Thursday, April 30, 2009

Good News to Report

Finally, some good news around here. Will had his big check-up today to confirm that his PTLD is still in remission and, it still is. He remains cancer free -- which is, obviously, great. After today's visit he has no more scheduled check-up CTs. It's been long enough that he doesn't need to be monitored that way any more, so, for the cancer part of life from now on, he'll just have a regular doctor check up with his oncologist every 6 months unless something else seems needed. Hooray! Two fewer doctor appointments a year! And, as a free bonus bit of good news, today's CT showed that his lungs look better, so the new regime of high-dose Cipro and inhaled Colistin seems to be working on whatever infections process had taken hold of his lungs this time.

(Will did not have to go into the hospital on Monday; his regular pulmonary doctor seemed, confused is the nicest way to describe it, I guess, to learn that Will had been discharged with no follow up treatment when he was in 2 weeks or so ago. The set of problems he is dealing with now is almost certainly a pseudomonas flair up infection/inflammation in the small airways; the pseudomonas is always around and it jumped on the opportunity/weakness caused by the cold virus Will had three weeks or so ago. This makes me realize that maybe I should be a little more assertive with Will and his docs sometimes, since I know from past conversations with the pulmonary doctor that this type of thing is likely to happen and was pretty shocked when Will described no follow up care from his last hospitalization because: "it's viral and can't really be treated." It's never only, just viral. The bacteria are always looking for their chance. But, Will HATES the Colistin, it is awful to take, so he can sometimes be not overly motivated to question these decisions.)

For more information on PTLD, a transplant-related form of lymphoma, see here and here. It's most studied in bone marrow transplants, but also can occur in solid organ transplants (like lungs). Will is unusual in that he had two types of PTLDs, as described here. It never rains but it pours, I guess.

I'm really happy about the CT thing. Will has had so many CTs, honestly, I don't think it's exaggerating to say that in the past three years he's had in the neighborhood of 35 or 40. That's a lot a radiation, so I'm all for CTs only when really, really necessary from now on. Putting the scheduled CT behind us frees up more of my brain to worry about the pig flu. Which is good, since it requires a lot of worry. Immune suppression to maintain lung tx + pig flu = very bad news. I have washed my hands so many times in the past week it's amazing I have any skin left. The real thing will be deciding if/when to pull Liam out of his 2 day a week "school." We'll just have to play it by ear, I guess.

Liam has taken to picking all the flowers in the yard, but, so far, only the yellow ones. This is potentially useful for the dandelions; less good for the marigolds. For some reason, he likes to put the picked flowers into Mollie's outside water dish. (He knows that flowers go in water, I guess that's it.) Photos are: waiting inside the gate for Daddy and Grandpa DH to walk up, showing Mommy the flowers, and flowers in Mollie's dish. Mollie doesn't seem to mind.

Sunday, April 26, 2009

In the absence of spring cleaning

I am going to try to clean up the labels on all the blog posts. I hope this doesn't screw anything major up and that, if anyone gets this as a feed, you don't get inundated with every post from forever back just because I've cleaned up the labels. Here goes. . ..

The Garden

The garden is doing well. I was worried earlier this spring that were were going to be faced with total failure of the early carrot crop but they have rallied. (They were frozen by frost, snowed upon more than once, and stepped on by the dog and by Liam.) It's carrots, swiss chard, peas, broccoli (not pictured), spring onions, and arugula so far. More to come.

Liam likes the garden, especially now that it is actually producing plants that he can recognize. "Baby plants; please don't step!" spoken urgently about what looks like a bare patch of dirt is confusing. The chicken wire is to keep out the dog; she digs. Liam likes to pet the plants through the wire. (The marigolds came from the store.)

In other news: we're all some degree of sick. Will, of course, the worst although he says he does not think he'll be admitted tomorrow. Liam and I both have a pretty persistant and hacking cough. And between jet lag and everything else, I admit to being pretty tired. At this point we just thank God we don't have any symptoms of swine flu, and are busily planning how we can avoid all human contact for the foreseeable future. Swine flu + immune suppression to maintain a lung transplant = bad news. We'd like to avoid it.

Saturday, April 25, 2009

Home With New Shoes

I'm finally home from a long-ish work trip to DC. Tired. I usually don't bring Liam presents from these trips, but this time for some reason I was captured by these plastic shoes. There is a whole store full of them in the airport -- every color one can imagine. So, at 9pm when my flight landed last night I found myself going in and buying Liam a pair in orange. He likes them.

Quiet day here today. Will seems worse to me, but he says that he's the same. Cough is quite bad and he's short of breath with it seems like almost any walking around. He is going in for a re-check with his pulmonary doc on Monday and if I can rearrange my work schedule I'm going to try to go with him to see what they say. Liam also has a nasty cough, but I think that's just regular little-kid cold stuff. That's about all to report. It's supposed to be a little sunny tomorrow, so I'll try for some pictures outside.

Wednesday, April 15, 2009

La, La, La, La, La

We're all about the same. Will is still very sick and still trying to get a straight answer from the transplant clinic about what he should be doing and when he will be re-checked and whether subsequent/ongoing analysis have revealed anything beyond RSV. Liam is still wonderful in his 2-year old way. His frustration response is on a hair trigger, but he is so sweet tempered that it's hard to fault him for it. I'm super busy at work and traveling again. Today's activities included: trip to Seattle for a crappy morning in the office there; on to Wenatchee for a meeting (tonight and tomorrow); and then, the true drama figuring out how to get my taxes printed and mailed here, at 5:30 PM. (The kind lady at the hotel finally took pity on me and printed them for me on her printer.)

Grandpa DH and GG continue to save our butts every week by taking care of Liam at all hours and keeping him so very happy. And, that's the Wednesday report.

I wish I had thought to bring my camera to Wenatchee, I had forgotten how really pretty it is here!

Sunday, April 12, 2009

Happy Easter!

We were greeted with rain and wind sideways this morning and all day until just about 45 minutes ago, so we decided to pass on Liam's first egg hunt. He did have some plastic eggs with MM candies in them in his Easter basket, and he thought those were just fine.

Lovely dinner with Grandpa DH and GG and Auntie Chris tonight --- and the antibiotics for ear infection #4 seem to be kicking in so Liam's mood is improving by the hour. Will is saturating in the mid-90s on room air, so that's good. He's glad to be home and we'll figure out the follow-up over the next week or so.

Saturday, April 11, 2009

Health updates

Will has been sent home from the hospital; he arrived a few minutes ago. His color is good and he looks very well hydrated. These short hospital stays may be worth for hydration alone. Basically, the docs thing Will has RSV infection, a cold. They've stopped treating with antibiotics because they're worried about c. diff. (A secondary bacterial infection caused by, you guessed it, antibiotics. It's a big problem in hospitals and Will has had it before. His immune suppression makes anything like that hard to get rid of.) He is to take it easy, do his breathing treatments, and stay hydrated. Make an appointment to check back; call if it gets worse; etc. So, I guess that's good. I hope he gets better. Thanks everyone for all your thoughts and good wishes during this latest bout of lung-tx complications for Will. The support means a lot to me.

In less dramatic health news, Liam has yet another ear infection, this is the 3rd in 4 months, but because it's in the other ear we are spared a referral to ENT for now. Thank goodness. Poor baby (and poor mommy!) slept very little last night. Hopefully tonight will be better.

Friday, April 10, 2009

Hospital. . .sigh

Will was admitted to the hospital yesterday; so, here again to the forefront comes the main reason I started this space: to keep family and friends updated when Will's health gets messy.

As is almost always the case his cf/transplant clinic had him go in through the emergency room. This is just about the most chaotic and awful way to be admitted to the hospital one can imagine and generally involves explaining to no fewer than three teams of student-doctors his entire complicated medical history, while they try to do advance pulmonary diagnostics and screw around before they finally call the pulmonary fellow and just get Will admitted already. Will is usually much more resigned and patient about this than me. I didn't go with him yesterday (work. . .Liam. . .I used to always go with him, but now I can't); when I'm there I tend to say over and over "his pulmonary doctor from the transplant clinic told him to come to the ER to be admitted" and nothing else. This is undoubtedly annoying to everyone, so that's probably a good reason I can't go with him so much anymore.

No real information yet. He had an x-ray. . .which he reports looked "good" but then he also said the docs have called what he has pneumonia so, I feel not sure about how good the x-ray might really have looked. (On the other hand, what happened in Dec/Jan when he was last in the hospital was that the first x-ray looked clear but once he got re-hydrated the second x-ray was a mess.) He had a bronchoscopy. He is on vancomycin and "another" IV antibiotic (he wasn't sure which one). He has diffuse infection (they think bacterial) in both lungs and a "node" or "clump" of something in the upper left lung that might be fungal or might be viral or might be something else, it didn't look bacterial to the docs. They're doing tests and seeing what grows out. Maybe some answers tomorrow. . .one hopes. He's on 2 liters of oxygen and has been stable at that rate since last night.

I haven't decided what to do yet. . .Will's spirits sound pretty good , so it might be best to just let him go with this on his own. On the other hand, it would be nice to hear first-hand what the docs think is happening and ask all my nit-picky questions. (What are the viral levels in his peripheral blood? What is the level of that inflammation marker? What inhaled antibiotics besides Colistin---which he refuses to take---could he have access to at home? Etc.) Maybe I can talk with the doctors on the phone. Will reports that they told him he could go home tomorrow maybe (provided nothing gets worse overnight and he seems stable), and wait out the full diagnosis here; but he didn't sound like he thought that was the best idea. I guess he wants to wait and see.

In other news: Liam had a pretty good day at school. He tried numerous fruits and they made a chart of which ones each child tried and which each liked the best. Liam liked strawberry the best (no surprise there). Only one child was recorded as liking the lemon at all. Liam is starting to connect with the school-room a little more. . .today when I got there to pick him up he showed me which tissue-paper flower he had made and where it is on the wall. Pretty good for not quite two. Meltdown at bedtime (he dislikes changes in routine, and not having Will here to read him bedtime stories is a pretty big change), but he's asleep now. That first, really grateful, sound sleep. . .the one where I know that I have at least 5-8 safe minutes to do the most important things of the evening whatever they are and maybe as many as 90 minutes or more before he is likely to wake up. (Edited: he just woke up crying to beat the band at the 45 minute mark; needed the full rocking back to sleep. I think he has a stomach ache poor thing. I hope it's not another ear infection. I suspect my minutes to myself are limited.)

So, to wrap this up: I'm flattered that two of the women I've "met" and really admire through IVF boards sent me one of the awards that is making the rounds of that network. They are both in the middle of cycles . . . one in early pregnancy, one facing roller coaster, ambiguous results and beginning to look at donor eggs. Both amazing in the brave and positive way they are taking the journey to create their families. So, thank you so very much EB and meKate, you're both in my thoughts and intentions this weekend.

Wednesday, April 8, 2009

Liam touched a bird today

He spent today with Will's parents and Will's mother reports that he crept up very carefully to the bird feeders and gently touched a pine siskine on the tail. (It hopped to a different perch.) Something about this must have made a big impression on him, because when I got home from Hanford today he told me "buh, buh" which is his "word" for bird. Sweet baby, I love it when he tells me about his days.

Will is sicker and has said he will call the doctors tomorrow. He had another fever today and his oxygen saturation and lung functions are down. Hopefully it won't lead to hospitalization.

My work week: regular office, regular office, Hanford (14 hour day), regular office, Hanford.

Next week: regular office (or maybe Seattle), regular office, Wenatchee overnight, Wenatchee then home (14 hour day), Bellingham (14 hour day).

Week after: regular office, DC, DC, DC, DC.

Sucks. That's for sure.

Sunday, April 5, 2009

Early morning

By 8:15ish, Liam had finished breakfast and seen the sun and was ready to go outside an play, no fooling around. So, he and Mollie chased the ball and he played with trucks and I tried to drink my coffee.

Poor baby boy started running a fever this afternoon and evening -- I suspect another ear infection, which means another trip to the doctor tomorrow morning and another assignment for Mommy: read up on recurrent ear infections and what to do about them.

Saturday, April 4, 2009

We got our sunny day

It was lovely. Not quite as warm as I'd like (I don't think it was into the 60s, but maybe tomorrow), but very sunny and pleasant. Liam and I started the day by meeting my parents at the Farmers Market where Liam must have consumed an entire apple and pear worth of "samples." (They like him because we go pretty much every week and Liam's first word was apple.) Then home for lunch and nap and playing in the yard all afternoon: chasing Mollie the dog, planting seeds, playing with the gravel, rolling trucks and climbing all over the big rhododendron tree. Now we're inside; Liam's reading with Daddy and trying to wind down before bath time. Hope everyone who visits this space is having a lovely weekend.

Thursday, April 2, 2009

How to eat macaroni and cheese with your spoon when you are 21 months old

First, you have to get the macaroni and cheese made. This requires Mommy. Get the empty taped up box of macaroni and cheese from your play kitchen and carry it around whining and signing please until Mommy stops what she is doing and puts water on to boil. No photo of this, but you can see the box on the table in the later photos.

Wait patiently for the macaroni and cheese to cook (while eating carrots and pea pods). When it finally arrives, shovel the macaroni and cheese into your mouth with both hands.

Look at Mommy like she has grown two heads when she says "Liam, macaroni and cheese is a spoon food, please." But, try to humor Mommy. Place the macaroni and cheese very carefully one macaroni at a time on the spoon and put it in your mouth.

Whenever Mommy isn't paying attention go back to using your hands.

Try to figure out how your hands got so sticky.

And you are spared photos of the drumming on the table with the spoon while singing at the top of your voice and of holding the sippy cup in your teeth and pretending to be the dog. (Who has never, as far as I know, put one of the sippy cups in her mouth.)

Happy birthday to cousin K. I bet your table manners beat Liam's!

(All done sign.)

Wednesday, April 1, 2009

The weather

Honestly, the weather has been rotten lately. We had snow again this morning. Not enough to stick to anything, just enough to make everything thoroughly wet and cold. And then wind and rain on and off all day. I'm ready for a week of sunshine. This is a winter to make one understand all those people who spend spring break some place sunny and warm.

The hummingbirds are going through sugar-water at a rate of about one feeder full every three days. It's something.