Today's update

In the good news department: Will’s oxygen requirements have decreased, he’s now on only 3 L delivered by nasal canula.

In the not so good news department: they’re following Will for at least five different things, all individually serious. The parainfluenza pneumonia they don’t have any proven treatment for, so they’re hoping it runs its course and goes away quickly. The bacterial infection/pneumonia, with likely is pseudomonas aeruginosa, they are treating with IV and inhaled antibiotics. The aspergilus/fungal infection is being treated with an anti-fungal. And then, today, they cultured shell vial for cytomeglovirois and so began treatment with gancyclovier, a powerful antiviral. Also today, will cultured positive for c difficile an intestinal bacterial infection that is very present in hospitals and associated with, surprise, treatment with powerful antibiotic therapy. So, he gets a different, oral, antibiotic for this.

The report from grandpa DH who spent the day with him and his nurse who I just talked with is that Will feels thoroughly crummy and is very sick, but stable. So, hopefully all these medications will start to do their job and he will feel better tomorrow morning.

"Not out of the woods yet"

These are not the worst words you can hear from a doctor, but they're not the best either. Turns out that Will is sicker than originally advertised. With hydration (or maybe progression, but the theory is that it is at least partially hydration-related, he was pretty badly dehydrated on admission) his lungs became noticeably worse on imaging and they are now calling what he has a parainfluenza pneumonia with secondary bacterial and possibly fungal infections. He had a rough night last night, his oxygen saturation went way down and apparently this morning they were having trouble keeping him saturated above 90% on any amount of oxygen. When I got there around 9:30 he was on 10 L of oxygen delivered through a face mask and that was keeping him saturated at about 92%.

Parainfluenza is, near as I can tell, part of a series of viruses that causes colds and croup among other processes. It is most common in young children. (Thank you, Liam's new school!) There is no proven treatment, but there are some anti-virals they might try if Will's condition worsens. In the meantime they are "aggressively treating" everything else they find -- which means IV antibiotics (ceftazine), inhaled antibiotics (colistin), and an anti-fungal drug (voreconezole). I think I spelled most of those right, or close, I don't feel like dragging out the Merak manual to check spelling right now. The hope is that Will will start to feel better in the next few days. They'll be watching is oxygen saturation closely, since it sounds like that is one of their main indicators of whether he is improving or not. This is all made very complicated because Will's immune system is purposefully suppressed to maintain his lung transplant. So, things that aren't a big problem for most people can turn out to be really big problems for him.

When I left this evening he was tired but feeling better and his oxygen saturation was up at 95% or so on 8 L at 60% delivered by face mask. He had eaten some lunch earlier in the day, opened some of his weather-delayed Christmas presents from L (Key monster things---a surprise big hit!) and said he would try to eat some dinner. (The hospital kitchen will deliver meals to order until 7:30 PM, it's really a much better system than the previous, "whatever we've happened to cook coming to you on a tray whenever we happen to bring it" approach.) The pulmonary service checked Will right before I had to leave and proclaimed: "You're not out of the woods yet; but I'm less worried than I was this morning."

Thanks to Grandpa DH and GG for taking such good care of Liam all day today so I could be with Will, and for taking care of him tomorrow so I can work, and generally for all their help juggling so many things including my short, stressed-out temper. We hope and pray that the other virus panels come back clean and that he doesn't have a cytomegalovirous infection on top of all of this.

Will is in the hospital

I think this is the first time he has been admitted since we started this blog. (Which is amazing, when you think about it---it's truly wonderful that he'll be in the hospital only, I think, twice this whole year.) One of the reasons I decided to start and try to maintain this space is to have an efficient way to update friends and family when Will's health gets more complicated than usual. So, here's the update:

• Will has had high fevers (in excess of 102 degrees F) almost daily for about 10 days. He has been very congested, had an upset stomach and overall felt crummy.
• Today was a regularly schedule clinic appointment for him---when he arrived at the hospital his lung functions were down some but, more worrisome, his blood oxygen level was very low, in the low 80s when measured. He felt exhausted to walk around the hospital after days on relative inactivity at home.
• They admitted him and did a bronchoscopy. Based on the samples they collected from inside his lungs, the docs suspect a bacterial infection that has not yet progressed to pneumonia. This is, basically, good news (if being in the hospital with a lung infection ever can be thought of as "good news") assuming the bacteria are sensitive to antibiotics. They'll know more about that in a day or so as the cultures of the stuff they took from Will's lungs today start to come back.
• They've drawn blood to test for blood infection (sepsis) and will run virology to look for Epstein Barr virus and Cytomegalovirus. We won't know those results for a day or so.
• Will also was somewhat dehydrated, so they've been giving him a lot of fluids.

When I talked with him tonight he sounded okay and said he was pretty comfortable and planning to rest. I'll go up tomorrow to keep him company and hear first-hand whatever the docs have to say. Stay tuned and please keep Will in your prayers and thoughts; he has been really feeling yucky and it's a crummy time of year to be in the hospital.

In other news: I managed to get all the Christmas cards finished and sent last night and most of the thank you notes finished tonight to be sent tomorrow. Amazing.

A quiet house

Liam is asleep and Will is upstairs too. Even Mollie is resting quietly here on the couch next to me. Auntie C went home this morning and we miss her so much already. It's quiet.

Will is still having high fevers every day at least once a day, is congested, has an upset stomach and seems to feel awful. At least the fevers seem to be responding to Tylenol still. This makes at least 9 days of fevers if I'm counting correctly, which I think I am. Will has a regularly scheduled clinic appointment tomorrow, so hopefully they will be able to give him some idea what is going on. He is thinking he may be admitted, but hopefully, at least, straight from the clinic and not through the ER.

A new year's resolution to consider

I suspect everyone who reads or stumbles across this blog is already registered as an organ donor. If not, I ask respectfully that you please consider becoming registered this coming year.

I tend to have a lot of time on my hands each evening, 30 or 45 minutes or so, when I'm rocking Liam to sleep. One of the things I spend some of that time on at least a few times a week is being mindfully grateful to the family who donated their loved one's lungs for Will's transplant. When I look at Liam fidgeting (or not fidgeting), sleeping (or not sleeping) in my arms, I think about them. I know that the mother and father probably would give anything in the world to have their child back. Or maybe there is a spouse, missing the person they thought they would grow old with. Or children, missing a father. We don't know much about them this family, except that Will's donor was about his age -- early 30s -- at the time of the transplant. But their gift has made everything possible for us. Everything. Even as I'm very, very sure that given the choice they would have saved their person instead of saving Will, when their person was gone, this family chose to save someone else. They chose. They saved.

We've always been registered as organ donors in our family, I remember checking the box for my first driver's license, and when my father died unexpectedly my mother, even in her shock and grief, gave the okay to please donate anything that could be useful. They took corneas, and skin, I think. The point is---once you're dead, you don't need any of your earthly stuff any more. None of it. And other people really, really do need it, to the point of death themselves. So, if you have shied away from registering as a donor in the past, please reconsider. And, if you aren't opposed but just haven't got around to it, well, please get with the program. And please make sure your family knows your intentions. You have no idea what a difference it might make.

Christmas

We didn't get a lot of photos of Christmas with my camera today. I was just off the photography I guess. But, it was a lovely day. Besides all the lovely and generous gifts (Too many! As usual!)there was so much big and small to be thankful for.

• Despite his continuing high fever and looking like he feels like crap Will says he thinks he's getting better. I hope so. He sits eating fruit candy (thanks Santa!) and shivering away in his hat on the sofa next to me.
• Grandpa DH and GG are both feeling better and were able to navigate the roads without incident and make it over for a very relaxed Christmas morning.
• Liam went all day---and it was a full day---without a single tantrum or meltdown of any size or substance. He kept busy ferrying all the gifts small enough for him to carry from the tree to their recipient.
• White Christmas here in the Pacific NW. As sick as I am of the snow, how often will we be able to say that. The sun came out finally today and it was beautiful. Plus, knock wood, it appears that no pipes have frozen.

Merry Christmas everyone. Grandpa DM and Grandma KM we can't wait to see you in a few weeks and it was great to "chat" with you over the Internet today.

Photos are: Liam watching intently to see which is faster, new plastic airplane or new plastic front-end loader; playing with the "age 3 and up" toys from his stocking; white Christmas; and pointing out that birds are eating dinner too!

Crown catch up

Really. . .I think mine is the best crown yet. Thank you Grandma KM and Grandpa DM.

Beautiful Birthday Crown

We've been putting off celebrating my birthday because everyone in the house seems to have some form of the creeping crud. . .Will worst of all with continued fevers every evening and morning and lots of congestion. But, with Christmas upon us tomorrow, we decided we couldn't wait any longer so tonight I got to open my birthday crown, made by my mother and grandpa DM. Beautiful. . .the best crown yet. I especially like the offset between the blue and the white and the embroidery and the colors, and the ribbon tie, well everything. The pearls were given to my mother by my late father, so that is especially meaningful. And, I'm told that there are more for Auntie C's crown. Liam thought the crown was amazing.

Yesterday three kinds of soup were made by me and delivered to the neighbors. Who needs cookies on the 7th straight day of snow. . .soup was in order. Today it all came back to us in cookies, spiced nuts, and a "beet dish" that I can't wait to try. I like beets quite a bit but never remember to buy or cook them.

We're all going a little house crazy so we let Liam open one of his presents early. A "grown up" pusher, which he has been running around the house ever since. That part worked great. What I didn't expect is, well, it makes a lot of noise. Oh well, can't have everything.

Photos are: Liam and the pusher, Liam watching Will tie the birthday crown on my head, and assorted present opening. All in all, quite a nice birthday. Thanks everyone!

Edited: well, the camera ran out of batteries as I was trying to download the pictures so look for photos of the birthday crown later or tomorrow. Good night!

We have more snow than it looks like in these pictures, and a health update.

Seriously, I think we have over a foot of snow on the ground and, apparently, more to come. We'll see. I just called my phone tree people because the weather is so crummy that we've decided to close the office tomorrow. (Who would have thought that the phone tree we practice in case of earthquake would end up being first used IRL because of snow. In Seattle.)

Today Will feels very bad and is continuing to have high fevers, mostly at night. We'll have to reassess tomorrow and see if he needs to try to get to the hospital. He has a scheduled appointment next Monday, so I suppose if he is no worse and if his PFTs seem okay, he will want to wait. (And, really, who can blame him. Sitting in the emergency room for hours and hours waiting to deliver your entire, complicated health history to at least 6 people who have never seen you before in 3 different groups when all you really need is for the pulmonary fellow on call to admit you is. . .well, it's no fun.) Chris and I feel like crap too, so it seems like the most logical explanation is we all have whatever is going around and Will just gets it the worst and for the longest because of his immune system being suppressed and his lungs being particularly vulnerable to infection. We'll see. It has been 6 months since Will was last in the hospital. I realize that for our family only 2 hospital admissions a year would be a great and very stable place to be. . .but, still, I hope he doesn't have to deal with it this week. The weather sucks, and it's a crummy time of year to be away from home.

In other news we managed to get the tree in to the house today and set up and decorated, such as decorating will be this year. The rules were: nothing glass, nothing really easily breakable, and no ornaments that require hooks at a level where Liam can reach them. This leaves a surprising amount, but it's still pretty sparse compared to past trees. Also, three batches of Christmas cookies were baked by me today. Two turned out well. More on that sometime in the future.

Photos are: snow, more snow (Liam was trying to help me shovel the walk, note that I don't wear gloves either these days in solidarity with him, also, I can't find them), tree trimming, and Liam re-defining what "easily breakable" means by hurling the ornaments at the floor as hard as he could. Turns out, most will break.

So much for no fevers. . ..

Will had a high fever this morning, 103 about, when I measured it around 7:30. It went down with Tylenol and stayed down most of the day, but started to go up again this evening. Night fevers and night sweats are, generally, frightening to us because of their association with blood cancers. Will says he thinks it is probably a cold or something like that and, of course, that is the more logical explanation. He has no particular other symptoms that I know of; and is not loosing weight. So, we'll stay tuned, I guess.

Auntie C, the wonder-sister, and I did venture out with Liam today taking our lives in our hands (we saw two car crashes and at least one almost crash---the roads are a mess and people just refuse to go slow) and got a tree. Plan A was: crisp, cold, sunny tree cutting expedition with Liam and Mollie and maybe snow flurries and warmed cider. I even clipped the list of local tree cutting places (there must be half a dozen within 30 minutes of here) from the newspaper and pinned it to the fridge. The actual plan turned out to be: $18 tree at the grocery store that Chris lashed to the car, with 8 inches of snow and ice on the ground, not a spare place in the parking lot, and more snow on the way. Chris wrestled the tree up on to the porch where it sits freezing away. It has been snowing steadily here since noon---probably another 4 inches or so. The weather forecast people say that for a little variety it might turn to ice pellets by 11 PM. Maybe I'll try to stay awake for that.

Will has a cold or something.

He has been feeling crummy again and not wanting to do much. This is hard, especially when all the holiday madness is in full swing. (Will isn't wild about the holidays to begin with; feeling crummy doesn't help.) We wonder what is going on. It seems like this whole Fall it has been one week or so of feeling really bad and then a week or 10 days of feeling a little better, and then back to feeling bad again. But, as of last checking, Will's PFTs are holding steady where they have been (around 55-60% I believe), and he isn't running fevers. I blame in part at least the forced air heat in this old house. Our old house had radiant-floor heat, which was so much better for Will. I think I'm going to look into some kind of safe humidifier for when Will sleeps --- something that won't grow and spew lots of bacteria.

In non-Will health-related news, I had a routine blood draw a week or so ago and they ran a vitamin panel (something they are doing standard around here, I guess, these days), and I was found to have clinically low levels of vitamin D. Like, they want the number to be 30 or 32 or something and my number was less than 10 (I think it was 8, or maybe 6). This is annoying to me because I thought all this vitamin D stuff was a case of stories planted in the news by vitamin manufacturers gone mad. Anyway, I'm now taking prescription vitamin D. Prescription vitamins. Honestly. So now we will have to ask about this for Liam at his 18 month check up next week and maybe give him a vitamin too. . .also, we have to remember to ask about fluoride since the water around here doesn't have fluoride added to it.

The rest of the day

went like this. Liam went over to play at GG's and Grandpa DH's. I went to work for a few hours. Then, Chris and I went downtown and completed almost all the Christmas shopping. I can't believe it's true even as I type this, but it is. Then we came home and started wrapping presents. Liam came home.

Then, big event, Liam's first ever web-cam broadcast with Grandma KM and Grandpa DM in California. A big hit. Liam kept running around to the other side of the computer to see where they were. He misses them; but, he looks at their pictures almost every day and we explain that they are coming back soon, so that's okay.

Tonight brought Liam's first almost sleepover. We volunteered to babysit O so his parents could go out for an evening, and tonight was the night. O is about 8 months older than Liam and frequently doesn't know what to make of him. What seasonal activity can an 18 month old and a 2 year old participate in together you ask. Why -- smashing the candy canes to make chocolate peppermint candy, of course. The smashing was a smashing success. The rest of the candy making was not even close to as interesting as playing with the trucks and trains. I meant to take a picture of the finished product but, well, we were taking care of 2 kids. And now I'm tired and don't feel like trying to figure out why my photos of food always look so crummy and how to fix them. (Note photo of Liam smashing: he liked hitting the table a lot better than hitting the candy canes.)

Then bath time and a try at bed time but no dice -- so quiet play until O's parents arrived at about 10:00. Now Liam, Will and Chris are all asleep and I'm wondering if I really have to finish wrapping presents or if I can just go to bed too. O talks a blue streak. Chris was wonderful reading to him and answering over and over and over what kind of truck each truck in every book is and what it is carrying and where to. . ..

More snow

I think we have a good 6 or 7 inches on the ground and more on the way tomorrow night. It's lovely and, sort of a pain. Liam is getting more interested in it, but I think mostly he sees it as a barrier to his usual tossing-things-off-the-porch-for-Mollie routine. He refuses to wear mittens, and his hands get cold.

We're trying to keep up with the snow on the steps and the walk. Lots of shoveling. I haven't taken on the sidewalk yet, but I guess that's in the futures. Small reprieve today, but a new storm comes in tomorrow so stay tuned. We're very thankful to have a safe, snug home to stay warm in.

One down. . .many to go

Finished the first Christmas gift today: homemade granola for a colleague who as been so kind and helpful to me this year. She retired last year after holding a variety of executive jobs, she still advises a number of elected officials and does a little consulting and has been so very generous about introducing me around and advising me. Yet another thing to be thankful for.

She's a mountain climber/hiker type, so the card is a postcard by Kirchner, known for being branded as "degenerate" by the Nazis---just stop and think about that one for a second---because, well, things were pretty free and loose around his studio, apparently. His more familiar work is the figure paintings and nudes, I guess. I'm not wild about them, never have been overly keen on what modern expressionism does to the human form, although I suppose that's just because I don't know enough about it or something, but, I like the mountain landscapes. Something about how he captures both the beauty and the menace in high mountains; and those wacky colors. Nice. Very hard to find a link that even shows even one image of one of his mountain paintings; but the one above does.

I don't know how many other homemade Christmas gifts will actually be finished this year. As usual these days, I seem to have many more ideas than discipline to finish them.

In other news, Liam has been getting more and more interested in the Advent calendar. He really likes the picture of the deer, and wants to look at it every day. Late last week, we opened one of the little doors on to a picture of a boat. Great joy and ah! ah! ah! noises, which is Liam-speak for "boat." Since then, he has been a lot more interested. Today's picture was a hat. Very seasonal -- it was 14 degrees outside when Liam and I left the house this morning. Hat weather indeed.

Snow!

Snow is unusual here in the south Puget Sound low lands, but we got a little, tiny bit overnight and a little bit more (maybe 1.5 inches) during the day. Pretty. Liam had two excursions into the snow. First, first thing this AM (in his PJs, coat, and rubber boots); he thought it was pretty fun and ran up and down the sidewalk. Second, this afternoon, we bundled him up as if for Polar expedition and Will took him for a walk in pouring down snow. Will reports that Liam was not too impressed, and did not want to get down out of the carrier to explore. Our baby: takes him a while to get used to new things.

Now the weather people say it will get cold, cold, cold and stay that way for a few days. (Auntie C, pack your long undies!) Nice Will went outside into the arctic blast and scraped all the snow and ice off my car while I was putting Liam to bed, so tomorrow morning I'll only have whatever falls overnight to deal with. Yey!

Typing from Liam's Room Again

He is really having trouble with his sleep this past week. He goes down easily but then wakes up 45 minutes later and has a really hard time getting back to sleep. Tonight he was finally out enough for me to start my work again by about 9:15 or so after almost an hour of tossing and turning. He's not really awake---but he's not asleep either. He thrashes about, makes small cries (which turn louder quickly if I don't show up fast), and tries to climb in my lap. He likes to hold my hand or pat my tummy. He went through a phase like this a while back, so I know it's temporary. Maybe teething related, or he has a stuffy nose, or who knows. Poor baby---I just wish he could get comfortable and sleep.

Meanwhile, I had planned to sit downstairs and drink hot chocolate and press my nose against the window waiting for the snow we're supposed to get tonight, but I guess I'll have to be satisfied with regular check-ins with the NOAA weather web site.

From the desk of. . .

Poor Liam has really been having trouble sleeping this week. And he is tired, tired during the days, often wanting to fall asleep in the late morning before lunch. I'm experiencing an unexpected big slug of work as clients try to get things wrapped up before January. So, tonight is the second or third night this week I'm working from Liam's room. He has been waking up crying every 45 minutes; this is the only reliable way to help him sleep. I cozy up with my lap top in "dim" mode and he snuggles up and sleeps away. So far, so good.

I get a fair amount of talking-to from other parents about how Liam should learn to sleep on his own in his crib, and as much as I agree that it would be nice, I can no more imagine leaving him to cry at night than I can imagine not comforting him after a fall outside. He is 18 months old; still such a small person. Everything in human evolution wires him to understand that being with the group is good and safe and being alone is not normal. He doesn't see me at all during the day. If he needs his mommy to be with him at night to help him sleep -- so be it. I think our modern practice of putting babies in cribs and tucking them in separate rooms is weird, at best, anyway.

I am thoughtful tonight about how blessed and lucky we are to have Liam. I've had occasion to email with another woman who has been trying to conceive a child through IVF (her husband has cystic fibrosis) and it is looking like after initial encouraging results, at 7 weeks or so, she has been advised that she most likely will miscarry. So devastating; my heart breaks for her.

I've noticed that all our photos of Liam look basically the same

or are taken in one of four locations: the highchair, being held in the living room, looking out the dining room window at the birds, or playing on the stair landing. This is the product of (1) a small house; what you see is what there is except for the bedrooms upstairs, where we don't spend a lot of time except for diaper changing (not photogenic) and sleeping; (2) it is winter and we have only about 6 hours of daylight a day, so these are the places in the house that are bright enough to (sort of) support photography; and (3) Liam is in almost continuous motion this means that unless Will is interacting with him, or he is safely strapped into his highchair, I seldom have my hands free to take pictures and he's not still for them anyway.

So, today it is still more pictures of the highchair and the dining room window. Will has been steadily cleaning up Liam's haircut and I think he is starting to be happy with it. (It looks great, if you ask me.)

Highlights of this weekend: Saturday Liam had his first play date at home. O and O's parents came for brunch. This was surprisingly stressful because Liam started sobbing (stranger anxiety) as soon as they got inside the gate and, basically, never quite calmed down fully. Also, I accidentally tripped O while we were walking back from the park (well: I was holding Liam and couldn't see him or my feet and he walked into me, is what happened, but he did fall down; although he didn't cry or get hurt at all) and I'm worried his mother (who is wound tight) might be unhappy with me. Otherwise it went okay except they asked to see the entire house and wanted to look in all the bedrooms (which are, generally, a mess). We'll see how this relationship works out. Today it poured down rain pretty much all day so we took Liam to the children's museum. Crowded, but he really likes the trains and it is a bigger and carpeted space for him to run around in.

Busy week coming up this week, but I'll try to keep this space up to speed.

Early morning coffee cake

Liam was up at 5:30 today and wouldn't go back to sleep. He was hungry. He must be growing again. When he's growing he always wakes up early and hungry. We used our extra time to make a coffee cake for the office. This is Liam's first real experience licking the spoon. He's looking forward to Christmas cookies, I think.

Advent

We've been working on our Advent calendar (thanks Grandma K). So far, Liam is not as interested in opening the little doors as I am. Although, Dec. 2 was a ball, or maybe a Christmas ornament, and he thought that was okay; and today was a deer, which he thought was cool. Who knows what tomorrow will bring. (Photo shows the calendar on Sunday, before we started opening the doors.)

In other news: haircut for Liam today. Will cut it. If Liam would only hold still for 30 seconds, I might be able to get a photo. I think it will require some clean up (one whole side is noticeably longer than the other), but it accomplishes the main goals for now: less hair in eyes and fewer tangles. Liam is not wild about having his hair fiddled with.

Liam's testing

Liam's testing went fine today such as it was. There was a little confusion (read: incompetence) at the hospital so when we showed up at 8:45 after leaving home at 6:20 to ensure we wouldn't be late, the kept us waiting until 20 minutes after Liam's scheduled appointment time and then came out and said some version of "I'm confused; I see you on the schedule, but, why are you here?" So, blah, blah, blah. I explained that the neurodevelopmental clinic wanted to see Liam again and they wanted a play-based assessment first so they would have some information to go on; that we had be advised to come back at our last visit; that the hospital had called (twice!) to make sure we scheduled; etc., etc. Aggravating in the extreme. In the meantime, Liam was going nuts because he is right in the thick of 18-month-old stranger anxiety and he thought all the health-care professionals were incredibly frightening. Plus I'm sure he could tell that I was annoyed.

Eventually he calmed down (and I did too, a little) and played and was assessed (although not the formal test). He never really did calm down for the neurodevelopmental practitioner, but we answered her questions and she seemed satisfied/unconcerned, so the up shot is a good news story: we can self refer to speech and language therapy if he still isn't talking more at 18 months and we want to; otherwise, we don't have to go back unless we have concerns. Nice to be done with this for now. Thanks to GG (Will's mom) for getting up at 0'dark 30 to come with us so Will didn't have to go to the MRSA-infested children's hospital, where they advise immune suppressed people not to go.

Will has his GI testing tomorrow to try to figure out if anything can be done for his chronic stomach pain after eating (which is likely CF related, but could be nerve damage from chemotherapy). So, we hope that goes well and they can do something to help him. We're going to be big-time consumers of health-care in December.