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.
Liam's world. . .
Wednesday, December 31, 2008
Tuesday, December 30, 2008
"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.
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 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.
Sunday, December 28, 2008
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.
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
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.
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!
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