Tuesday, July 29, 2008
Hectic!
Long days at work this week and numerous evening dramas and commitments already. In the good news department: Will had an uneventful appointment with his infectious disease doc on Monday, his blood was retested and the white and red counts are both back in the normal range. So, that's good for now. We'll see what the virology shows when it comes back next week. In the meantime, this is Liam and Will during slower days, about this time last year. My Liam has grown!
Monday, July 28, 2008
Tee-Shirt Purchase
Just purchased a tee-shirt for Will's birthday (he almost never reads the blog, so little danger of ruining the surprise). Live Life then Give Life, the UK organ donation trust (charity). Scroll down to the "buy a tee shirt" link if you want one too. Very neat. (I looked for something similar in the US and didn't find anything -- our organ donation charity offers brochures for distribution, which are nice I guess but really aren't the thing for a birthday present.) I'd like to get one in Liam's size, so on the off chance that anyone from the UK organ donation trust ever reads this blog: children's sizes, please. Thanks.
Sunday, July 27, 2008
Symphony in the Park
Free symphony in the park tonight -- it happens once a summer. Last year we didn't go, Liam was barely a month old and I think Will may have been in the hospital with a lung infection. This year is much improved -- we made an outing of it, with both Liam's sets of grandparents in attendance. We're so lucky to have them all in town! (That's my mother with Liam at the top.)
If you look closely you may be able to see Will's clam shell incision scar from his transplant surgery. I'm told the docs were really proud they got everything on the surface lined up almost perfectly, so the windows tattoo still looks the way it is supposed to. The blanket Liam is on was made for him by a wonderful friend -- Teresa, who did excellent work and chose all our favorite colors!
Labels:
around town,
family,
Liam,
transplant,
Will
TOBI the CF Miracle Drug -- After Transplant
Will was working in the garage the other day, and thinking about starting a more regular exercise regimen, so he worked on his bicycle a bit and went for a short ride. It reminded me that I wanted to post on use of TOBI after transplant. You see, about this time last year, we thought Will would never ride a bicycle again. We thought he'd never drive a car, never be able to carry Liam, never row, never walk without a cane (he used a hiking pole, actually). . .never do a lot of things.
Will had a bout of very serious lung infections just before and after Liam was born. As part of trying to get all these infections under control, Will was prescribed TOBI. TOBI is an inhaled form of tobramycin -- a strong antibiotic often used in CF care. Tobramycin is good for getting rid of infections but it has a risk of destroying ones hearing and vestibular system. The vestibular system is part of the balance system, and provides most of the input to the brain on movement and equilibrioception, or your sense of up and down and, well, balance. Will had taken both tobramycin and TOBI before transplant and had always been okay. TOBI generally is described as much safer than tobramycin because it is delivered right to the site of the infection (the lungs and, in Will's case, the sinuses too) and it is thought not to concentrate in the bloodstream the way IV tobramycin might. In fact, my impression is that it is considered by most people and most doctors (certainly all of Will's doctors) to be very safe, especially compared to IV tobramycin. (I'm not a doctor -- I barely passed organic chemistry in college -- so this is just how I understand it and isn't any kind of medical advice to rely on.)
So Will is taking TOBI and struggling in various other ways, and we're trying to figure out how to take care of this brand new baby, and it's just chaos and one day Will says -- my balance isn't quite right. And, honestly, I think nothing of it beyond some version of: great, what now. (Even though I knew and had read up on the risks of tobramycin, like I try to read up on the risks of all Will's medications.) And a few days later, his balance really isn't right; and then he finds he can't see anymore when his head is moving and he starts to fall down. So we go to the doctor and (surprise!) he has (1) a huge high concentration of tobramycin in his blood and (2) total vestibular loss. Total. Gone for good. As in, never to recover. Turns out Will's kidney function (which was known to be at best fragile and, basically, bad) had resulted in the TOBI concentrating in an unexpected way. And because it was so unexpected the docs had not been monitoring for it -- and hadn't been monitoring the kidney function well enough either.
This was a huge blow -- Will has always been athletic and the idea that he might not be able to get around was devastating. But, after a little while of feeling really, really bad, he applied himself to the problem, worked slowly to perceive, process and build new physical feedback loops to help his brain process different information about balance in different ways, and now reports that he basically feels no different than before and can do anything he wants. He still has to be a little careful and will occasionally get some version of turned around and lose his balance, but he can walk unaided, ride a bike, drive, rollerblade, row and carry Liam.
The moral of the story for us was that medications taken before transplant won't always work the same way after transplant and kidney function is something to pay close attention to on its face and because of the way it may affect concentrations of medications in the system.
Will had a bout of very serious lung infections just before and after Liam was born. As part of trying to get all these infections under control, Will was prescribed TOBI. TOBI is an inhaled form of tobramycin -- a strong antibiotic often used in CF care. Tobramycin is good for getting rid of infections but it has a risk of destroying ones hearing and vestibular system. The vestibular system is part of the balance system, and provides most of the input to the brain on movement and equilibrioception, or your sense of up and down and, well, balance. Will had taken both tobramycin and TOBI before transplant and had always been okay. TOBI generally is described as much safer than tobramycin because it is delivered right to the site of the infection (the lungs and, in Will's case, the sinuses too) and it is thought not to concentrate in the bloodstream the way IV tobramycin might. In fact, my impression is that it is considered by most people and most doctors (certainly all of Will's doctors) to be very safe, especially compared to IV tobramycin. (I'm not a doctor -- I barely passed organic chemistry in college -- so this is just how I understand it and isn't any kind of medical advice to rely on.)
So Will is taking TOBI and struggling in various other ways, and we're trying to figure out how to take care of this brand new baby, and it's just chaos and one day Will says -- my balance isn't quite right. And, honestly, I think nothing of it beyond some version of: great, what now. (Even though I knew and had read up on the risks of tobramycin, like I try to read up on the risks of all Will's medications.) And a few days later, his balance really isn't right; and then he finds he can't see anymore when his head is moving and he starts to fall down. So we go to the doctor and (surprise!) he has (1) a huge high concentration of tobramycin in his blood and (2) total vestibular loss. Total. Gone for good. As in, never to recover. Turns out Will's kidney function (which was known to be at best fragile and, basically, bad) had resulted in the TOBI concentrating in an unexpected way. And because it was so unexpected the docs had not been monitoring for it -- and hadn't been monitoring the kidney function well enough either.
This was a huge blow -- Will has always been athletic and the idea that he might not be able to get around was devastating. But, after a little while of feeling really, really bad, he applied himself to the problem, worked slowly to perceive, process and build new physical feedback loops to help his brain process different information about balance in different ways, and now reports that he basically feels no different than before and can do anything he wants. He still has to be a little careful and will occasionally get some version of turned around and lose his balance, but he can walk unaided, ride a bike, drive, rollerblade, row and carry Liam.
The moral of the story for us was that medications taken before transplant won't always work the same way after transplant and kidney function is something to pay close attention to on its face and because of the way it may affect concentrations of medications in the system.
Saturday, July 26, 2008
To the Park
And this was our evening. Sleep tight everyone!
We are going to go throw things for Mollie.
Daddy, let me try!
My turn!
I can toss and hold my foot at the same time. (Note the influence of Wyeth in this photo, well, except for the forward-facing foot holding, and the tennis ball. . ..)
Daddy -- time to go home.
Blueberry Pancakes
This is how our morning went today. I wish for each of you a million mornings just like this one was for us.
Mommy, can we have blueberry pancakes for breakfast? Yes, Liam
Daddy! We're having blueberry pancakes for breakfast!
Wait. . . do I like blueberry pancakes?
I think I do like blueberry pancakes! (Just like his Daddy.)
I really, really like them!
Friday, July 25, 2008
Blood Work
First, I promise to post more pictures of Liam soon. I know no one is really interested in this other stuff. But, I just got home from a week of work travel late, late last night; and finally picked Liam up tonight at dinner time after working all day today, and the battery in my camera was dead when I went to take pictures tonight. So, tomorrow.
During his chemotherapy for Hodgkin's lymphoma in 2006 Will really suffered from blood reducing side effects. Even being treated with special medications to promote production of white blood cells, he had neutropenia requiring hospitalization after virtually every treatment. Even with treatment with more special medications to promote production of red blood cells, his hematocrit took a dive each month. It got to be that we were regulars at the hospital. I could virtually plan my work commitments around knowing that he would be in the hospital for about 5 days starting about 2 weeks after each chemotherapy treatment. (Not to make light of it -- these are very serious things and cancer patients die of infections contracted while they are neutropenic. The one month we didn't go to the hospital resulted in the toughest talk I've ever received from any health-care professional ever, from Will's cancer doc. It went like this: "People die, no fooling. You have to go to the hospital. He has to have strong antibiotics and anti-fungals, he has to be monitored, this would be a stupid thing to die from.")
Ever since then, Will's had odd incursions of bad blood work for no apparent reason. So, time to watch it again and consult with the doctors next week. Hopefully someone will come up with some (relatively benign) explanation for why this is happening. Could be the transplant drugs (although he has been on higher doses before without this happening); could be the transplant drugs interacting in a weird way with something he ate, something in the air, something, whatever. Could be a side effect of treatment with Rituximab, which has been observed to result in delayed neutropenia in some people, from his first PTLD (see, e.g., which I picked because you can get the full text for free and it has many references if you want to do more research).
Could be, anything. Likely we'll never know, it just will be something else to monitor more closely for a while and worry about a little more. And, we'll be extra careful about infection control, since fewer than normal white blood cells means even less ability to fight infection. And, feed Will all the dark leafy greens and red meat he'll eat to promote red blood cell production. And, stay tuned for the results of the consultations with the docs on Monday.
The photo is again from Wikipedia, a Human blood smear. A is some erythocytes; B is a neutrophil; C is an esinophil; and D is a lyomphcyte. Makes perfect sense now -- doesn't it!
In the meantime, we have some information that probably explains (in part at least) why Will has been feeling so crummy lately. He had his normal transplant-checking blood work earlier this week. This is a routine blood draw to check the levels of immune suppression medications in his system at the trough (that is, when the medications should be at their lowest point) and to check other odds and ends such as kidney function and overall blood health. Turns out that Will's overall blood health is not too good right now. His neutrophils (white blood cells) are about half what they should be and his hematocrit (red blood cells) also is quite low. No idea why. (Infections as you all remember from 11th grade health class generally cause more white blood cells, not fewer.)
During his chemotherapy for Hodgkin's lymphoma in 2006 Will really suffered from blood reducing side effects. Even being treated with special medications to promote production of white blood cells, he had neutropenia requiring hospitalization after virtually every treatment. Even with treatment with more special medications to promote production of red blood cells, his hematocrit took a dive each month. It got to be that we were regulars at the hospital. I could virtually plan my work commitments around knowing that he would be in the hospital for about 5 days starting about 2 weeks after each chemotherapy treatment. (Not to make light of it -- these are very serious things and cancer patients die of infections contracted while they are neutropenic. The one month we didn't go to the hospital resulted in the toughest talk I've ever received from any health-care professional ever, from Will's cancer doc. It went like this: "People die, no fooling. You have to go to the hospital. He has to have strong antibiotics and anti-fungals, he has to be monitored, this would be a stupid thing to die from.")
Ever since then, Will's had odd incursions of bad blood work for no apparent reason. So, time to watch it again and consult with the doctors next week. Hopefully someone will come up with some (relatively benign) explanation for why this is happening. Could be the transplant drugs (although he has been on higher doses before without this happening); could be the transplant drugs interacting in a weird way with something he ate, something in the air, something, whatever. Could be a side effect of treatment with Rituximab, which has been observed to result in delayed neutropenia in some people, from his first PTLD (see, e.g., which I picked because you can get the full text for free and it has many references if you want to do more research).
Could be, anything. Likely we'll never know, it just will be something else to monitor more closely for a while and worry about a little more. And, we'll be extra careful about infection control, since fewer than normal white blood cells means even less ability to fight infection. And, feed Will all the dark leafy greens and red meat he'll eat to promote red blood cell production. And, stay tuned for the results of the consultations with the docs on Monday.
The photo is again from Wikipedia, a Human blood smear. A is some erythocytes; B is a neutrophil; C is an esinophil; and D is a lyomphcyte. Makes perfect sense now -- doesn't it!
Insurance
We rely on our health insurance for everything. Before I met Will and became his means to access insurance -- he is insured through my work -- I never paid much attention to it. Now, if there's any trouble with insurance, it is consuming. Currently we have a great situation -- all of Will's doctors and hospitals are in our network and the pharmacy covers many (most, really) of his medications to some extent. (And Will's parents generously help with deductibles and costs for what isn't covered.) In the past few weeks we found out that our company's health insurance costs are expected to increase by over 30% next year. Over 30%. We're a 35 person company and, basically, can't afford this -- especially as it comes on top of double-digit insurance cost increases each year for at least the past 3 years. So, we really are going to have to look seriously at reducing benefits and/or changing or reducing choice in insurance plans. I understand that these difficult choices are necessary from a company perspective but, for my family it is, in a word, terrifying. Really -- like, I start to get tunnel vision and have to close my eyes and breath deeply whenever I start to think about it. Let alone the guilt I feel because certainly Will's claims and needs are -- in part at least, and maybe in large part -- driving some of this increase. We heard from our current insurance pool coordinator that our increases are due in part to "heavy use." (Of course, we've also had at least 5 pregnancies across the staff in 2 years (including my pregnancy with Liam) and at least 2 people with cancers (including Will), so I guess that all counts too.)
I wish I knew what to ask people to do to "fix" the insurance problem in this country. I have been listening to some NPR stories comparing US insurance approaches with those in other countries and I recommend them as enlightening and thoughtful, but I don't really know what action every-day people can take to cause change to happen. All the normal stuff -- write your elected officials, consider this issue when you vote, get involved locally. Mostly, stay healthy if you can.
I wish I knew what to ask people to do to "fix" the insurance problem in this country. I have been listening to some NPR stories comparing US insurance approaches with those in other countries and I recommend them as enlightening and thoughtful, but I don't really know what action every-day people can take to cause change to happen. All the normal stuff -- write your elected officials, consider this issue when you vote, get involved locally. Mostly, stay healthy if you can.
Wednesday, July 23, 2008
Uncertainty and gratitude
The Confessions of a CF Husband family has received the bad news that their PTLD is not responding to rituximab and will require traditional chemotherapy. I know from watching Will's experience with chemotherapy that this is likely to be a very difficult time for them. Traditional chemo is hard for anyone, I think, and particularly crummy if you health is already fragile and your immune system suppressed. I think they'd appreciate your thoughts and prayers in the days to come.
It reiterates for me how quickly one can go from feeling like things are on an even keel to complete chaos. We all know intellectually that any one of us could face the end at any moment, but if you're a person with health conditions that can turn very serious very quickly you experience the reality that your life is temporary most every day. You don't make assumptions about the future like most people do. We don't particularly focus on this in our family, but we don't ignore it either -- it's something to be respectful of. We know that even without any more cancer ever, Will's lung transplant won't last forever. Sometimes it makes us really, really sad to know this, and sometimes we can deal with it in a more matter-of-fact way, and occasionally, especially when Will is feeling well, we don't think about it for a few days or weeks at at time. We hope Will's transplant lasts a long, long time, and it may; it also challenges us to be mindfully grateful every day.
It reiterates for me how quickly one can go from feeling like things are on an even keel to complete chaos. We all know intellectually that any one of us could face the end at any moment, but if you're a person with health conditions that can turn very serious very quickly you experience the reality that your life is temporary most every day. You don't make assumptions about the future like most people do. We don't particularly focus on this in our family, but we don't ignore it either -- it's something to be respectful of. We know that even without any more cancer ever, Will's lung transplant won't last forever. Sometimes it makes us really, really sad to know this, and sometimes we can deal with it in a more matter-of-fact way, and occasionally, especially when Will is feeling well, we don't think about it for a few days or weeks at at time. We hope Will's transplant lasts a long, long time, and it may; it also challenges us to be mindfully grateful every day.
Monday, July 21, 2008
Cousins!
Liam and his cousin K, a beautiful baby girl, on family dinner night. So nice to have a small baby in the house again, even for a brief visit. Liam was fascinated -- see how Will's dad is having to hold Liam's hands back from touching (grabbing) the baby. He really wanted to see what she was all about!
Traveling
I'm traveling for work this week -- all week. We're lucky that I have a good job, and we get a lot of help from our parents taking care of Liam while I'm working, but it's crummy to have to travel. On the bright side, I've finally given in and begun to use one of those rolling suitcases. What a difference. I always, always carry too much work stuff -- papers I think I might want to read, computer, extra battery, etc., etc.. So much better to be dragging my rolling suitcase instead of carrying my (way too heavy) work bag AND another bag. I got my rolling suitcase second hand from my mother. Thanks mom!
I've been having airplane woes lately -- late flights, delayed flights, you know how it goes. Also more frightening stuff. One small plane hit a bird a few months ago and had to return home and land (I missed that meeting). A big plan I was on last month had to do a "go around" on landing (which means some kind of really steep take off just when you thought you were going to---finally---be on the ground) because there was already a plane on the runway it was meant to land on. Last nights' little plane took the strangest route I've ever seen to this place (I'm in Eastern Washington) and then went over and all around the little airport and then turned and turned and finally went in for a bumpy landing. (Maybe they had to go to the other side because of wind, but it didn't seem that windy.)
I've been having airplane woes lately -- late flights, delayed flights, you know how it goes. Also more frightening stuff. One small plane hit a bird a few months ago and had to return home and land (I missed that meeting). A big plan I was on last month had to do a "go around" on landing (which means some kind of really steep take off just when you thought you were going to---finally---be on the ground) because there was already a plane on the runway it was meant to land on. Last nights' little plane took the strangest route I've ever seen to this place (I'm in Eastern Washington) and then went over and all around the little airport and then turned and turned and finally went in for a bumpy landing. (Maybe they had to go to the other side because of wind, but it didn't seem that windy.)
Saturday, July 19, 2008
Family Dinner
Liam didn't eat the whole thing all by himself, but he wanted to. We were blessed and lucky to have (almost) Will's entire immediate family to dinner: his mother and father, sister and her daughter. Only his brother-in-law couldn't make it. And, my parents were here too (that's my mother feeding Liam). The best thing we ate was grilled vegetable salad (first bowl).
Here's how it goes. First, all the prep: (1) Cook about 8 oz of orzo pasta. Drain well, rinse, toss with about a tablespoon of olive oil and set aside. (2) Slice up 1 or 2 zucchini or summer squash and 1 or 2 red or yellow peppers. You're going to grill them and then chop them, so plan accordingly when you slice. Set aside. (3) Chop up 1 or 2 tomatoes, the best you can find. I also seed them, which helps the salad not be too wet. Set aside. (4) Clean about 1 pound of shrimp (you're going to grill these too). Set aside. (5) Chop up about 8 oz of whole milk fresh mozzarella. I bet other cheeses would be good too, but I haven't tried any yet. I'm thinking a lightly smoked cheese would be good ,or a manchego cheese crumbled. Set the chopped up cheese aside. Make the dressing, mix up: at least 2 tablespoons fresh lime juice, 3-4 tablespoons olive oil, 2 tablespoons red wine vinegar, and 3 tablespoons store bought basil pesto. That's it for the prep.
Now, cook. (1) Mix the shrimp with 2 or 3 tablespoons of the dressing and set aside. You want them to marinate for 3o minutes or so, not much longer because the lime juice will start to cook them. (2) Heat the grill. (3) Brush the peppers and zucchini slices with some of the dressing. (4) Grill the peppers and zucchini and the shrimp.
Finally, assemble. (1) Chop up the grilled veg. Mix them and the grilled shrimp with the orzo pasta you cooked before. (2) Add the tomatoes and the cheese and about 1/4 cup (or more if you like it) chopped up fresh basil. (I roll up the leaves and cut it into thin ribbons, which I must have seen on TV or something.) (3) Add the rest of the dressing. Mix it all up well. That's it.
You can make this up 2 hours or so ahead of time, maybe more (although I haven't tried that). Keep it cold if it is going to sit around too long, serve at room temperature. We love this because it really tastes good and it's pretty much all cooked -- Will isn't supposed to eat too many uncooked vegetables because of the anti-rejection, immune suppression medication he takes. I got this recipe from Bon Appetite magazine, I think the May or June issue from this year; I think it's the first recipe from them I've really liked in a long time.
You can make this up 2 hours or so ahead of time, maybe more (although I haven't tried that). Keep it cold if it is going to sit around too long, serve at room temperature. We love this because it really tastes good and it's pretty much all cooked -- Will isn't supposed to eat too many uncooked vegetables because of the anti-rejection, immune suppression medication he takes. I got this recipe from Bon Appetite magazine, I think the May or June issue from this year; I think it's the first recipe from them I've really liked in a long time.
Best of all, Liam was so tired after all that playing and eating that he when straight to sleep, no fuss at all. Hope you all are having many joyful family dinners this summer.
Labels:
around the house,
family,
food,
transplant
Friday, July 18, 2008
Liam's Lovey
We are desperately auditioning a "lovey" for Liam. A lovey, apparently, is some soft thing that a baby takes to and it will help him or her fall to sleep. We're keenly interested in Liam sleeping better and all the baby sleep books I've read (and there have been many over the past year) say some version of "a lovey will help any child sleep better." Sounds great. So far, Liam hasn't quite taken to the whole concept. To the extent he's interested at all he has, of course, rejected the super-safe knitted lovey-fuzzy-bunny thing in favor of "soft doggie" the flip-floppy stuffed animal with the dangerous choking hazard plastic nose and eyes. I've seen Liam chew on them more than once.
We've got to figure something out. Liam's bedtime routine leaves a lot to be desired. Tonight's fun went like this: 6:15 pick Liam up from my parents' house and bring him home; 6:30 - 7:15 Liam plays with Will, this involves Will trying to get Liam to be interested in being still and looking at books and Liam running around; 7:15 begin the move towards bedtime, bring Liam upstairs, brush teeth, and quietly change him into his PJs; 7:30 rock in rocking chair, Liam drinks final baby bottle of the day. All is going pretty good up to this point. Liam is really tired. He napped well, so should sleep well.
He finishes bottle, snuggles for about 2 minutes, and then it starts. Liam wants to get down and play on the floor. When he isn't allowed to he cries. Liam wants to hid soft doggie under the pillows on the bed and find him again. When he isn't allowed to he goes nuts. Liam does not want to be in his crib. He also does not want to be held. So, we go into the crib with patting and comforting and trying to get him to lie down. When he gets too worked up, we go into the rocking chair again. More crying. More to the crib. Now it's about 8:30 and Liam is so tired that half the time when he tries to sit up in his crib he falls over. Still no sleep. Liam throws everything out of his crib on to the floor. Then wants it all back. I sit in the rocking chair next to the crib and wait for him to calm down. More crying. Finally at about 9:15 Liam is tired enough that he allows himself to be rocked to sleep. I go downstairs to start the work I didn't get to at the office today. Some version of this happens basically every night. We hope and pray that he adopts a lovey soon and that it works.
The Chucker
Liam is interested in anything that has to do with Mollie. He wants to drink from (or knock over) her water bowl, throw her kibble around, and, most of all, toss the ball for her. Will got Liam a mini-chucker and has taken on the idea of teaching him to chuck. So far, Liam definitely knows how it is supposed to work but he can't get his arms, and mostly his wrist, to move in quite that way. Will keeps trying with him.
Thursday, July 17, 2008
We Love our Puffs & Will Rocks
We love our puffs, we really do. It's a silly thing. We got them for Liam's first birthday, about a month ago, based on these catalog pictures that show some well behaved, VERY clean-looking children sitting on puffs at a craft table doing crafts, or practicing their alphabets, or penning thank you notes, or some other laudable thing, it's clear. We thought Liam could site on them at the coffee table and look at books or whatever. (HA! He never sits still.) Anyway, we got some and we love them. They are just the right size for Liam to pile all over. They're bright and sturdy. And, they're great for mommy and daddy to "sit" on, alleviating some of that hoisting ones self up and down from the floor that happens when playing with an (almost) toddler. They were expensive, but we love them. We got them at Land of Nod.
I'm so proud of Will today. Even though he was up half the night coughing and clearly felt crummy this morning, once he got up he got going, and got out of the house, and went to the park, and stopped by my work to say hi, and played with Liam this evening, and, in general, didn't sink into the depths of despair on account of feeling sick. It's such a hard and complicated thing this disease. A transplant is an incredible gift; and it brings a new set of challenges.
I'm so proud of Will today. Even though he was up half the night coughing and clearly felt crummy this morning, once he got up he got going, and got out of the house, and went to the park, and stopped by my work to say hi, and played with Liam this evening, and, in general, didn't sink into the depths of despair on account of feeling sick. It's such a hard and complicated thing this disease. A transplant is an incredible gift; and it brings a new set of challenges.
Labels:
cf,
Liam,
shopping,
transplant,
Will
Confessions of a CF Husband
I started this (new, improved) blog after coming across and then becoming addicted to reading Confessions of a CF Husband. This is the story of a couple from North Carolina who are going through an amazing journey with stops along the way for: a very premature baby (who is now doing beautifully), a double-lung transplant, and now PTLD. When they posted about their PTLD, I realized how much families who are traveling these roads have in common and it made me want to put some of our experiences out there in case they can help anyone, in any way. So often it can make a difference just knowing that someone else has been there.
So, check it out: http://cfhusband.blogspot.com/
So, check it out: http://cfhusband.blogspot.com/
Busy, Busy, Busy
It's been a knock down, drag out week at work for me, but I hope to catch everyone up on all the news this weekend. In the meantime, all the crafty, designy, parenting-type blogs I tend to look at seem to have posted photos of strawberries lately, so I thought I'd post mine. We ate a huge number of strawberries over the past month and put even more in the freezer for winter. Will loves strawberries with Brown Cow whole milk yogurt. Liam loves strawberries any way he can get them. Of course, strawberry season officially ended here last Friday and we're (almost, any day now!) on to raspberries. Typical of my hectic life that I get my strawberry pictures up when the season is already over!
Will is still feeling crummy and is more and more congested, so he may be headed back to the hospital for more IV antibiotics in the weeks to come. Or, back to the colistin (which he hates). Or something. We are hoping he starts to feel better soon. Hoping, hoping, hoping.
Labels:
food,
Liam,
transplant,
Will,
work
Friday, July 11, 2008
Pseudomonas is No Fun
Pseudomonas aeruginosa according to the Pseudomonas Genome Database V2 is "a versatile Gram-negative bacterium that grows in soil, marshes, and coastal marine habitats, as well as on plant and animal tissues." In other words, it's everywhere. For most of us, it's not a problem. But for people with cystic fibrosis, or cancer, or who have a compromised immune system, it can be a big, ugly problem. Will's on and off pseudomonas infection pre-dates his transplant. For a while after transplant it seemed gone for good, but when Will got PTLD and then Hodgkin's lymphoma, and the various types of pneumonia that went along with being sick, his pseudomonas came back and seems like it might be here to stay for a while. Will's pulmonary doc says: people after transplant get what they had before transplant. I guess that has pretty much been true for Will. It has been making his mornings, especially, tough lately.
PS - I took the pseudomonas photo from the wikipedia site, which says it is P. aeruginosa colonies on an agar plate.
It may be that as Will gets farther out from the various lymphomas and pneumonias and his health stabilizes more and (we hope!) improves more, he'll be able to clear the pseudomonas as he was able to pre transplant. But, it will be harder this time because of the immune suppression drugs he needs to take to prevent rejection. In the meantime, he tries to keep it under control with daily airway clearance and periodic IV and inhaled antibiotics.
It appears that the pseudomonas makes a home in Will's sinuses and goes from there into his lungs. Sinus surgery has been discussed but the results seem uncertain, especially for someone with CF. If any of you CFers out there have experience with sinus surgery one way or the other, please let me know. Thanks.
PS - I took the pseudomonas photo from the wikipedia site, which says it is P. aeruginosa colonies on an agar plate.
Tuesday, July 8, 2008
The Dog is Delightful
Liam loves Mollie, the dog. He also loves Emma (Grandma K's dog). He loves his flip floppy stuffed dog. He just loves dogs period. The thing that makes him squeal with glee, just beside himself happy, is when Mollie rushes up to the storm door and he is on the other side. This is about as close to Mollie as he generally gets, since she thinks he is too unpredictable to be around and avoids him when they are together inside and confines her engagement to responding to ball throwing (usually with an assist from Will) when they're together outside. It is quite a sound that squealing with glee, I'll miss it when he's grown out of it.
Note Will's big water bottle. The lung transplant saved his life but it didn't cure his CF. (There's no cure -- yet!) So, he loses a lot of electrolytes when he sweats and he sweats more than most so he has to drink lots of water. (It's also important to help protect his kidneys from the damage that the immune suppression drugs want to cause them, not to mention the damage already done by chemotherapy drugs and all that CT contrast.) Lately he's been adding an electrolyte replacement mix to the water, something made for hikers, called Vitalyte (used to be called Gookinaid). He likes it -- says it's just slightly sweet and slightly salty, enough to make it better than plain water but not enough to be annoying or make you thirsty.
Labels:
around the house,
cf,
Liam,
Mollie
Our House
The mice got me thinking about our house. We love our house and are so very, very happy to have found it. Right before Liam was born, we were able to purchase one of the oldest houses in town, a 1904 (or 1902, depending on who you ask) smallish Victorian farm house called the McClellan house.
The McClellan house had fallen on some hard times (which was how we could afford it!) and needed quite a bit of work. So far we have:
- Put on a new roof on the house and garage
- Put up thin drywall over all the old cracked lath and plaster
- Painted everything except the kitchen and upstairs bathroom
- Insulated almost everything
- Installed a very fancy air filter to catch any old mold or lead tainted dust
Grandpa DM built new front steps, fixed up the basement so it doesn't fill with water anymore and has new windows that aren't broken and open and close and have screens (this makes a much better home for mice, apparently!) and he and Aunt C renovated the downstairs bathroom, replacing a tangle of twisted pipes formerly known as the 'shower in the kitchen' with white bead board and a new sink and a new cupboard. He also cleaned, painted and put back in all the trim around the baseboard so it looks nice. Grandpa DH fixed the old windows so they open and close like they once did, with the iron counterweights on new ropes, and he put in a great new front storm door that's all glass so that it lets in the light, but stops the wind better than the old door (it let light in too, but mostly around the edges). He also helped Will put on a new garage door so animals wouldn't think we cleaned all the years of junk out of the garage just to give them more space.
Our parents have done a lot of other work, too -- rain barrels so water drains away from the house and into garden areas, wiring and lighting, and lots of other things. And Will has been fixing up the garage on his own schedule -- that is, intermittently and at weird hours -- so it's a useful workshop for building and fixing things.
We are so very grateful for all the house help!
Mice!
It turns out that we have a mouse (or two or three) in the house. He/she/they ate part of a peach off the kitchen counter, part of a butternut squash, and tried to make a home in the broiler drawer of the oven (ICKY!). Will has taken on eviction of the mouse/mice -- so now we have traps everywhere, or at least everywhere in the basement. I'm conflicted about killing the mice instead of live trapping them and releasing them in a nearby greenbelt (my preference); however, after Will investigated the situation, it seems like we have more of a mouse problem than I realized and I can't find my very expensive "Sherman" live traps for mice leftover from when I was practicing to be a wildlife biologist (more on that some other time), so we're officially on mouse death watch. Wish us luck.
Friday, July 4, 2008
Graduation
From the kitchen sink to the "big boy" bath tub (actually, the only bath tub in the house, but, whatever). Tonight was the first try and went pretty okay, thanks to Grandpa DH and GiGi taking Liam to baby swim and making him so like playing in the water that even though he is very suspicious of bath time, he mostly goes along provided there are LOTS of toys. This is what it looks like after the bath is done and the baby is in bed. The washcloth with ric rack trim is actually the best baby bib ever, and multi-purpose to boot. Will's mother made Liam a bunch of these and I'll post on the instructions some time in the future. They're awesome.
Stairs
Liam is learning to go down the stairs (he's already mastered up). The trick apparently is to turn around at the very end of the hall and scoot on your stomach backwards all the way to the top of the stairs to make sure you're "feet first." He's curious and eagar to learn new things, but pretty thoughtful in how he goes about it. Happy 4th of July.
PS - the hall and entry color is a Benjamin Moore paint called "baby fern." It is easily my favorite color in the entire house; Liam's too.
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