Wednesday, December 31, 2008
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.
Tuesday, December 30, 2008
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.
Monday, December 29, 2008
- 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.
Sunday, December 28, 2008
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.
Thursday, December 25, 2008
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.
- 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!
Wednesday, December 24, 2008
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.
Sunday, December 21, 2008
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.
Saturday, December 20, 2008
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.
Friday, December 19, 2008
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.
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.
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. . ..
Tuesday, December 16, 2008
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.
Sunday, December 14, 2008
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!
Saturday, December 13, 2008
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.
Thursday, December 11, 2008
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.
Sunday, December 7, 2008
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.
Friday, December 5, 2008
Thursday, December 4, 2008
Tuesday, December 2, 2008
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.