Monday, August 31, 2009

Angus and the Cat

It is a pleasure I've been waiting for to see Liam get old enough to start to really enjoy his storybooks. He really likes them. He's into the stories, and we frequently have little conversations about them along the line of this:

Liam: hau-ray (with a very soft "h").
Mama: what Liam?
Liam: haur-ay!
Mama: honey, I'm not sure I understand, try one more time please.
Liam: hau-raaaay (accompanied by sign for bath).
Liam: (kitty noise).
Liam: huh-huh (with an uplift at the end; what he says for "yes").

It's really not as much like talking to myself as the recount makes it sound.

An unexpected pleasure it to see Liam become totally and absolutely captivated by a book I actually remember from my childhood. It's even nicer that he's reading my childhood copy which by some twist of fate and superior organization by my mother, survives only slightly bent and ripped.

This is a funny book, like Runaway Bunny where the picture are all back and white on one set of pages and in color (mostly bright pink, yellow and navy-ish blue) on the next set of pages. It tells the story of a scottie dog (Angus) and how he finds himself living with a Cat who is allowed to do all the things that he is not allowed to do; and how he wants the Cat to go away, except that when the Cat hides and he thinks she's gone, he really misses her, and is then glad when she comes back. Liam especially likes the parts where Angus chases a frog and where the Cat hides on the roof.

It's funny to see how directly the stories influence his play life. He is all of a sudden very interested in playing hide and seek and peek-a-boo again and I can only think that spending all weekend talking about how the Cat hides on the roof and Angus looks all over for her has something to do with it.

Sunday, August 30, 2009

This weekend we. . .

Danced with Daddy and were very happy that he felt well enough to move around with us a little bit.

Colored pictures and practiced sitting on the telephone book and not getting the colors on the table.

Stayed in our pjs all day and made bread for dinner. (A note about children's clothes: they almost all have these annoying sayings on them, e.g., "yes I am adorable" or "the world does revolve around me" or "mommy's little angel." So far as I've been able to tell unless you want to pay a fortune for plain things, which are inevitably designer and organic and available only by mail order, you end up with the least obnoxious. This one says "Who you calln crabby" which as I type it seems pretty darn obnoxious.)

That was all yesterday. Today we got up and went to a work-friend's house to play on her beach and see clams in their native habitat, pick blackberries, and climb about 150 stairs up and down (it's high bank). Delightful. Liam was as interested in the forest as he was in the beach, especially the blue jays. Then home and play in the yard with Daddy while Mama pulled weeds and, best yet, leftovers for dinner so no one had to cook!

We're coming up on a big anniversary here this week: early in September it will be 8 years since Will was given the gift of life in a double lung transplant. More on that some time later.

Friday, August 28, 2009

Green Beans

Will is the reliable one at harvesting the garden. I can be relied upon to do the planing and tending but easily forget to pick the vegetables. Liam loves to help with the vegetables, especially carrying them from the garden to the house. Yesterday they caught up on picking green beans.

Lovely dinner with Grandpa DH and GG tonight. Thank you. Liam now will (finally, finally) say "GG" which is very cute. He staill calls Grandpa "GoGo" which is so very sweet and probably will never end.

Health Update

It has been both a slow and eventful few days health-wise for Will. He has been working hard at his recovery, walking the dog every day since he's been home from the hospital and trying to drink at least 2 quarts of water a day. No real change in anything yet, his lung functions are still down quite about from his baseline. (They are about 41% of what is predicted for someone of his age and height.)

After still hearing nothing from the hospital about the results of his bronchoscopy, and wondering about if they had a plan to protect his kidney-function by giving extra iv fluids or something after his scheduled colonoscopy, I called the nurse-transplant-coordinator on Thursday about noon. They are mostly quite good, but there is one who is a total mess. Never has the right information or units for test results; is always screwing up dosing instructions and just in general does not give out reliable information. So, the one who is a total mess calls me right back; and then when I don't pick up my work phone b/c I'm on a conference call she calls my cell phone; and then when I don't pick up my cell phone she tries to call Will at home and then on his cell phone. Never have I seen the transplant clinic try so hard to get hold of us. Well, turns out that they did not want Will to have the colonoscopy after all. (This information finally reaches him about 30 minutes before he is supposed to drink the yucky drink that starts the, umm, process.) I suspect the instructions had been sitting around in the chart on on the nurse-coordinator's desk for at least 24 hours and she had just not paid enough attention to call. But, that could just be my past bad experiences with her talking.

At any rate, the cancelled the colonoscopy because they found CMV in the bronchoscopy. But she couldn't tell if it was shell vial or active infection. And she didn't know how much. And she wasn't sure the level of CMV in Will's blood. And his regular doctor is on vacation (or something) and all the other doctors are at a conference so, according to her, there was absolutely no one he could talk with to get a better sense of his test results. Nonetheless she was adamant that he must start on iv ganciclovier, immediately. If Will does, in fact, have CMV colitis this is the same medication they would give him anyway, hence the cancelling of the other test. On the other hand, if he doesn't have an active CMV lung infection and if he doesn't have CMV colitis, than he's getting treated with something pretty serious for no reason. No way of knowing right now since there was no one with a clue we could find to talk with at the hospital, and Will decided to start treatment, just in case. He is concerned about his lung functions not bouncing back and is, I think, looking towards anything that might help. So, that's all we know until Monday when hopefully I can track down someone who can really read the chart and tell us what is going on.

Tuesday, August 25, 2009

Will is Home

Will is home. He was discharged today. He didn't have any results of the bronchoscopy to share. The level of CMV in his blood is "very low." He is saturating in the mid 90s on room air. He goes back on Friday for a colonoscopy to evaluate for CMV colitis. That's all we know.

It's very good to have him home, even as it is distressing to see him still short of breath and still having trouble with his digestion, and not have a clearer theory of what might be going on or (even better) a good path forward for treatment. Hopefully Friday's testing and followup from that plus quick followup with Will's regular pulmonary doctor will give us a better sense of what to expect.

In the meantime, we're very happy he seems to be stable and is home to sleep in his own bed without all the constant hospital interruptions!

Monday, August 24, 2009

There is a giant backhoe thing parked in front of our house

Seriously, it's a lot bigger than it looks in the picture. I'm pretty sure the green pipes are 36 inch drain-line mains.

Whenever Will is in the hospital and I'm here I get a little stressed out and tend to screw things up. This week, this is made more likely because our street is being torn up for a new drain line so I have to park my car at the end of the ally and up the block a little. Liam and I go thru the back gate and carry ourselves and our stuff down the ally to the car in the morning and reverse on the way home. This adds about 10 minutes to the journey provided we don't see any kitties who need petting on the way too or from the car.

Today was extra thrilling because just as I had almost got Liam to sleep Mollie started going nuts barking downstairs. After she didn't stop and didn't stop I went down to see what was going on. It was Bunny (the neighbor kitty's) family at the door! (With Bunny, he follows them all over the neighborhood.) I've been parking my car on the edge of their yard in the right of way. (They said it was okay.) They came buy to tell me the dome light was on. So nice. Then, seeing how completely un-able I was to formulate a solution to this relatively simple problem (Let's see: it's 9:00 at night, the baby is in his room but not asleep, it's not clear when he's going to go to sleep, the car is a block and a half away, and there's not another adult in the house to stay with the baby, asleep or awake, while I go turn off the light, umm. . .umm. . ..) they said: we'll take your keys and fix it and then leave them back on the front porch, we're out walking the dog (and the cat) anyway. What great neighbors. I must be across town by 8:30 tomorrow morning for a meeting with clients, and I'd have been sunk to go out in the morning and load Liam all up in the car only to find that the battery had died. Thank you Bunny's family. You're the best.

In other news: where is my little baby boy and who is this big toddler and how did he get in our yard?

Day 2

I didn't go to the hospital today, and only spoke to Will briefly (he sometimes doesn't feel like talking much when he's there), so this is all second hand, but here's what I understand:

  • Will is still saturating in the mid 90s on room air, so that's great.
  • His kidney function is not getting any worse; it's better than it was last week, but not yet back to his usual level. It was about the same this morning as when it was measured yesterday afternoon.
  • They finally did the bronchoscopy about 4:15 PM today. "Early." So Will was npo since midnight and not happy about it. No report on the bronch yet except that Will said it went "okay." I just called him and so far he hasn't needed any oxygen or had a fever (both are common for him after a bronch).
  • So far, there is no clear explanation for why Will de-saturated so badly when he was home on Sunday and I'm feeling more and more like the bad guy for insisting that he go to the hospital.
  • In the meantime, the docs are trying to figure out Will's digestive issues, since if they don't get figured out it will be hard for him to gain weight (which he really needs to do) or stay hydrated (ditto). The test for c.diff was negative. They're considering CMV colitis. Also considering whether it is a new sensitivity to one of Will's immune suppression medications. (This last one sounds weird to me since he's been on these meds for 8 years now and on them with reduced kidney function for at least 2, but what do I know.)

Will's parents were there with him most all of today. Unfortunately, I can't go up tomorrow because I have an all day meeting here that I have to facilitate. If Will's still there on Wednesday I may try to go up early and catch the doctors, but I can't free up my entire morning and so (as it always seems to go), I'd no doubt be on the phone with work when the doctors came by. We'll see. I can keep trying to clear my calendar.

Sunday, August 23, 2009

Hospitalization #4, Day 1, Updated

Will is on his way to the emergency room in Seattle. He was really starting to have a hard time at home with saturation in the mid 80s and just not doing well. I'm concerned his electrolytes might be all screwed up; this is something that can happen pretty easily just from the CF and with the kidney function problems on top of that, it's a factor.

Will's father is just home for a week-long hiking trip and could pick Will up and take him, luckily. I talked to the Doctor on call who is the same pulmonologist who saw Will last time in the hospital; that's good, since she'll know his case and recent course. I'll update later when there's some real news. For now if people could keep Will in their thoughts, that would be great. He's pretty sick really didn't want to have to go in today. It's always heartbreaking when he leaves.

Updated: Will was admitted. His saturation improved as the day went on and he has been in the mid 90s on room air this afternoon and evening. He has eaten (lots, I'm told). He has been given lots of IV fluids. His creatinine (a measure of kidney function) is down, a lot, from last Thursday, back to 2.5, which is still much higher than Will's usual higher than normal reading, but going down is very much better than going up. (This was expected and the reason the doctors discontinued treatment for CMV and aspergillus last week; but still, it's nice to see it at least sort of work.) Will did not want to be admitted, especially considering his saturation came up and he has no fever. But he is and he will have a bronchoscopy tomorrow "early" which means before 10:30PM in hospital speak, in my experience. (Well, I mean as I've experienced the hospital as a companion to Will; I've never really experienced any of this myself.)

Now I feel bad for insisting that he go, but I really did think he needed to be seen. (Which I still do; but I feel bad because I know he's really unhappy about it.) And I'm glad he's feeling better and I hope he doesn't de-saturate tonight, and that they figure out what is going on, and that he can start to recover and come home soon, maybe even tomorrow or Tuesday. Now on to the million and a half things that need to be done around here.

Friday, August 21, 2009

Garden in August and Random Bits

Lovely rain today. It must have started over night, and it continued on and off all morning and into the afternoon. Nothing too aggressive just a little rain. The kind of damp and mist that around here, reminds one that just as sure as fall follows summer, winter is coming. And it will be wet, and it will be dark. It's already getting dark. When I rocked Liam to sleep tonight it was no fooling dark outside his windows.

The garden this time of year is amazing to me. We have been lucky this year and to get really a lot of food out of our two little 3 by 9-10 foot beds. We're on to green beans, basil, and tomatoes now. And zucchini still, always. And swiss chard. . .carrots. With today's little summer rain following our 3-4 days of hot earlier in the week you can almost see the plants growing.

We're glad to have Liam home (he stays with my parents or Will's when I travel for work) and to have a quiet weekend ahead. Our local children's museum has it's main fundraiser of the year this weekend, and we'll probably go to that. The whole thing, which involves lots of little kid activities and a big-deal sand castle making contest, happens in the parking lot of my office. So, today I got to watch the sand being delivered. . ..

Will is about the same. Trying to stay hydrated. Trying to stay optimistic or at least positive. Saturation still mostly down in the low 90s and I don't think he has checked his lung functions. (He should; but, really, who needs more bad news on a Friday.) Still short of breath.

Lastly, in such a true sense of the word: we sold the co-sleeper today. Liam's baby bed, or beddy, we always called it. The place where I put him the first night he came home from the hospital. And where I remember watching him sleep, and sleeping next to him with my hand on his little side when Will was in the ICU so soon after Liam was born and I didn't know if we would ever get really any time together as a family.

We weren't using it and aren't going to be able to; it was just another thing in the attic and the money, even though it's not much, is handy right now. So, it's final. It's gone. To another family and a baby girl, Fraya, 10 days old.

Thursday, August 20, 2009

Kidney (dis)Function

Will had his regular oncology re-check today. The good news is that the oncologist doesn't see any indication of a relapse; Will is still cancer free. The not as good news is that Will's kidney function is quite a bit worse than it was when he was in the hospital. (3.1 serum creatinine compared to 2.3 or so in the hospital last week, compared to 1.8 or so, which is already high, usually. The normal range stops at 1.2 or 1.4 depending on who you ask.) So the doctors decided to discontinue the valganciclovir and the voriconazole today, for fear that they were damaging the kidneys more than they might be helping the lungs.

That's about all we know. I wasn't able to go with Will today because I had to work. A long day in Wenatchee and then a long drive home to more work and this news. He will be rechecked (a blood test) on Monday for kidney function and have his lung follow up the following (I think) Monday, and I guess then we shall have what may be an important discussion with the doctors about the risks/benefits of treating the lung stuff vs. protecting the kidneys and how all this may play out. Not unexpected, but also not happy news by a long shot. Particularly as winter cold and flu season looms, we would very much like all medications that he might need to be available to Will in case he needs them.

Wednesday, August 19, 2009

Tuesday Night Dinner

One of the things that can be very hard is getting dinner on the table quickly when I get home from work. Often I'm tired and don't feel like dealing with it. Usually Liam is hungry and that makes him clingy and temperamental. I've spent some time lately trying to get a better handle on dinner. If it goes well, we have a good evening. If it goes poorly, well, let's just say we've all been in tears more than once.

The key for me is thinking it through ahead of time and finding things that cook fast. (Aside: I now heart couscous because it cooks so fast.) So, here's Tuesday's dinner: spice-rubbed chicken from the grill, couscous with pine nuts and raisins, tomatoes, and sauteed zucchini. It came together in about 20 minutes, no fooling. Here are the steps.
  • Make the spice rub. Anything will do. I used about a teaspoon each of cumin and chili powder and about half a teaspoon of allspice and cinnamon. Adding turmeric might have been good, I'm trying to add more of that to our diet, but I forget. One could make this in advance for sure.
  • Cut up the chicken and put it on skewers. Salt and pepper. Dump on the spice rub. Put it in the fridge and wash your hands and wash up the counter. This also could be done in advance, say, in the morning before you leave for work. I'm always trying to remember to do things like that.
  • Melt some butter in a pan, add the pine nuts and toast briefly, add the raisins and add the couscous and coat with butter. Turn off.
  • Start the grill.
  • Cut up the zucchini. Start it cooking in a hot pan with a little olive oil, salt and pepper. Turn it down so it doesn't cook too fast.
  • While the zucchini is cooking, get a can of chicken broth and pour it into a measuring cup, add whatever water you need to have enough liquid to cook however much couscous you are making, and zap it in the microwave until it's hot.
  • Turn the couscous back on briefly, add the hot liquid and stir. Cover and cook on low for a few minutes and then turn it off and let the liquid absorb.
  • If there is someone to grill the chicken for you, find him/her and get them to do the grilling. Chicken on skewers is great because it cooks evenly and fast. 4-5 minutes a side, maybe less is about all it needs. If you're on your own, turn the zucchini way down or off (it should be cooked by now) and do the grilling yourself.
  • While someone is grilling for you (or while the chicken is resting if you did the grilling yourself) cut the tomatoes in half and add a little olive oil, a little sherry vinegar and some salt, pepper and whatever herb you have handy. I like thyme.

That's it. Make up the plates, pour the milk, and dinner is on the table. Liam ate it all happily except for the tomatoes.

The Boys (and Mollie)

This was yesterday, or maybe Monday. After dinner we all went outside and Will kept Liam company and played with him so I could pull weeds and plant plants. Liam loves the dog (except when she is trying to eat his food) and really wants to learn to use the chucker to throw the ball for her. Learning to use the chucker has been a theme in his life so far as you can see here and here and here. He's getting close; he can get the tennis ball in now, but still hasn't quite got the hang of the little flick you need to do to release the ball. By this time next year (at the latest) I expect he'll have it down no problem and we'll be spending our evenings (and mornings) collecting tennis balls from the street in front of the house.

The last picture is what you get when you say "smile for mama, please."

Monday, August 17, 2009

Update from Will's Doc Apt Today

Will saw his regular pulmonary today. Things are okay, but not great. Will's lung function numbers are a little better than they were when we was in the hospital but still not rebounded to back to his previous baseline. Actually, they're still down around where they were at the beginning of the year, although they've been up and down since then. His basic lung function is about 40% of what is predicted for someone of his age, weight and height. Not great. He doesn't feel great either, partially that's the medications, and partially that's because he gets short of breath easily, tires easily, etc. His saturation is generally still at 90 or 91% on room air, but his heart rate has been pretty normal, so that's good. Higher saturation would help a lot and I guess if this continues we'll be faced with home oxygen sooner than anyone wants.

We also found out today that Will is neutropenic, which means that a part of the white blood cell part of his blood system has been wiped out. This is a side effect of the valganciclovir and one reason why we are so hesitant to opt for treatment of CMV unless the docs feel pretty sure it is an active infection. So Will is getting GCSF shots to promote white blood cell production. He had these when he was on chemotherapy a few years ago. They're not great, but in the past at least, they have worked for him. (Will doesn't have cancer now, and a recurrence is not suspected. He doesn't have any of the symptoms that have usually come along with his past cancers. He does have a regular recheck with his oncologist on Thursday, so we'll know for sure then.)

The plan is that Will will be seen again in two weeks. He is to go off the ceftaz as scheduled, which should mean the last dose will be Wednesday; but maintain the picc line for at least two weeks, just in case. He'll stay on the valganciclovir and the voriconazole, although the hope is that he'll be able to go off at least the voriconazole and maybe both at his two week recheck. He is to try to stay hydrated (his kidney function is down, again) and try to eat a little more and get some regular activity. Today he took the dog for a walk, which is good. It's really hard.

Saturday, August 15, 2009

Trains and Cars

We bought Liam's trains and cars set today. I had done a fair amount of thinking about what kind to get for him and settled on PlanToys. In May we got a coupon for our local toy store that had to be used by the end of August, so I started putting a little bit away each month and today was the day. He likes them already but he'll also grow into them. So far the best things have been carrying them out of the store, unpacking them with Daddy, and having the cows attack the trains and moo at them.

I imagine when he's older they'll be a toy he plays with in his bedroom and can keep all set up however he wants. As it is now, they go in a green bin in the living room when he's done playing. They are crazy expensive, so they better last forever.

Beautiful sky tonight, flat and pale with grades of color up from the horizon from orangish to purpleish to blue. An understated, summer sky. I hear Will reading Liam's new library books up in Liam's room and know exactly what they look like snuggled in Liam's bed waiting for me to come up and do the rocking to sleep, and I can just see the bats starting to come out and zip around in the sky.

Friday, August 14, 2009

Since Will got home from the hospital we have been. . .

Picking and eating lots of tiny yellow and red tomatoes. And Liam picks a few green ones too.

"Playing" the piano and singing lots of songs. Liam's favorites are Row, Row the Boat and Take Me Out to the Ball Game. He's pretty good on both.

Playing with Little People. The Little People, they do the funniest things.

Enjoying Will and celebrating his birthday. Happy Birthday Will.

Will's 2nd Birthday Celebration

These are the photos of our at home celebration. Will's sister sent us these little ceramic animal-candle holders last winter and they are beyond cute. A week or so ago Liam noticed them in the china cupboard and went nuts. He has been so wanting to get them out ever since. We told him that we would put them on the table for Will's birthday and he was so excited when the time finally came that he could hardly control himself. (This resulted in only slight breakage to only one of the candle holders and I think I can glue it.)

After dinner Liam ferried them all one by one from the table to the china cupboard and climbed up on his step-stool to put them away. Then we had to name everyone in the entire extended family, plus Abby (my parents' cat), Emma (my parents' SWD) and Lily (Will's parents' cat), and assure Liam we could take the candles out for their birthdays too.

Thursday, August 13, 2009

Happy Birthday Will

I don't think he'll mind me saying that he's 41 today. Quite a thing. The Cystic Fibrosis Foundation puts about the best spin on all this stuff that I think can be managed, and even they eventually have to come out and say that the median predicted life expectancy of someone with CF in the US is about 37 years. Up from 32 in 2000. Up from much younger than that when Will was diagnosed and growing up. Will's transplant, of course, is the magic that buys all this extra time. As on every birthday of Will's that I've ever been a part of (since I met him after his transplant), we take out our grateful hearts today and are especially mindful of a family that somewhere, about 8 years ago, suffered a huge loss and at the very same moment made the gift that makes all these birthdays possible. Thank you donor family, thank you.

We had birthday celebration #1 last night with his parents and my parents; birthday celebration #2 today with just our little family. Very nice, but quite tiring when one is on IV antibiotics, strong anti-virals, and weird anti-fungals in addition to the normal antibiotic and immune suppression regime. And operating at less than 50% lung function. Will made it through though and had a good time, I think. Yesterday GG made a fantastic cherry pie (Will's favorite) from scratch. Today we had some of the last summer berries, ice cream and these fancy cookies Will likes. And a rainstorm during dessert, the longest and heaviest since at least May.

Will is starting to feel better. His blood work from Tuesday shows the CMV levels are back down under 1,000 units (I can't remember for the life of me what the unit is) and the rest of his blood work looks pretty normal for him except for the tacrolimus level which is scary high even though his is on an almost nothing does (which is scary on its own b/c the tacrolimus is one of the main immune suppressing medications he takes to maintain his transplant). This dodging around of the tacrolimus level is because of the voriconazole, which is metabolized by the same liver channel or something and always screws up everything tacrolimus-related. So, tacrolimus dosing will be looked at closely and the clinic will call back tomorrow with additional advice, if there is any.

Unfortunately the camera battery just died and I have never got around to getting a back up so more photos will have to wait.

Sunday, August 9, 2009


So, Will is home a little more than 24 hours now. So far, so good. He is being treated for three types of lung infection (bacterial, viral and fungal). His regular pulmonary doctor was covering the ICU post-surgery duty while Will was in the hospital and stopped by to say "hello." (Will wasn't in the ICU.) He will reassess Will in clinic on the 17th and says that his suspicion is Will will be able to stop treatment for 2 of the 3 then.

They suspect what they are really treating is a CMV infection. So, that's distressing, because it can be a hard infection to treat and the medication, valganciclovir, is not benign at all. Among its side effects, it can weaken bone marrow and screw up blood production. Will's cell lines aren't completely stable as is. Lingering side-effects of chemotherapy and years of immune suppression and who knows what all mean that he will occasionally go neutropenic with no real obvious cause or warning and fights anemia pretty much all the time. So, we'll watch all that even more closely these days.

In the meantime, for at least a week, Will also is being treated with the ceftazidime (for pseudomonas infection) and voriconazole (for aspergillus). The Voriconazole gives him headaches, or at least it has in the past, and it really messes with how one of his main immune suppression medications is metabolized. So, that dosing has to be monitored very carefully. All these drugs are hard on his already taxed and weakened kidneys. So, he is (I hope) trying to stay super hydrated.
We walked to the park today and threw the tennis ball for the dog. It was a pretty tough, long walk for Will, but he made it. Activity will be pretty important to recovery, so we're off to a good start as of day 1. His sats are in the low 90s, and heart rate can creep up trying to keep up with his oxygen demand; so that's not great but hopefully the sats will go up and the heart rate down over the next few days. (If not, we'll have to do something about oxygen at home and/or he'll probably have to go back to the hospital.)

That's all. Now we wait and see if he feels better or feels worse and what happens. He reports that he feels "okay" today; no worse. So that's good.

Saturday, August 8, 2009

A quick update

Will is home. He got here about an hour ago. He's being treated for a bunch of stuff, mostly with oral meds but the antibiotic is IV. (It's a pretty nice deal, though, as home infusions go. It's every 12 hours and it's a slow push, so he just puts it into the line by hand over about 10 minutes. Beats 30-40 minute infusions every 8 hours, which was the last thing he was on, I think.) He's not on supplemental oxygen. So, this is all very good, we hope, especially if all the treatments work.

Anyway, I am beat to the end for some reason and feeling very much like I'm coming down with something and just want to go to sleep. So, I'll post a real update about Will's details tomorrow or so. (Hate hospitals; they're full of germs.)

Thursday, August 6, 2009

Hospital - Days 2 and 3

Yesterday was a relatively uneventful day for Will at the hospital. He had the broncoscopy in the afternoon. It was 4 hours late, which meant he was NPO for almost 20 hours, because they don't let you eat before or for 2 hours after. He had a fever last night and required oxygen. Neither of those are unusual for him after a bronc. He hasn't had a fever since (so far!) and his oxygen requirement is decreasing.

Today results from some of the tests have started to come back. Negative for c.dff. That's very good. Detected both CMV (cytomeglovirois) and aspergilus in (I think) the sample collected during the bronc. This is both very distressing and normal. Will always has at least CMV shell vial in his lungs and almost always cultures aspergilus. As we have learned the hard way in the past, the trick is getting the docs to really look at the results and thoughtfully consider whether there are active infections or not, so Will gets needed treatment and can avoid unneeded treatment, especially of the time that wipes out his already suppressed immune system. In the meantime, Will is quarantined because of the CMV results (whatever they are) and that is a pain, and scheduled for a CT to check for active aspergilus infection. (I hate all the CTs and worry about secondary cancers from radiation in a disproportionate way that must be displacing some stronger emotion.)

I talked to the medical doctors on the phone, but before the test results had started to come in. Their read at the time was: not obviously getting better yet but certainly not getting worse. The pulmonary doctor has so far declined to call me back after 2 pages. I'll try her again in the morning and if I can't get through, I guess I'll drive up and see what I can find out in person. Will reports that he thinks he feels slightly better today, so I hope that's a good sign. They have him scheduled for picc line placement tomorrow, which also might be a good sign that he can come home and continue treatment here soon. I am hoping he has a peaceful night, free of fever.

(PS: Are you out their pulmonary doctor, sharing the universe with me? I think that ignoring worried people is a very thoughtless thing to do. It's not like I call and bug you all the time. I waited until I knew the test results were coming in so we could have a real discussion. I bugged the medical docs first. Unless you're assisting with a lung transplant (and you're not a surgeon), attending a dying person, or having a baby you should call me back. I carried around my cell phone even into the bathroom all afternoon and hung up on a client when I saw a number I didn't recognize that I thought might be you.)

Tuesday, August 4, 2009

Hospital Admission 3, Day 1

Will went into the hospital today. His fever was up this morning. His lung functions down. The transplant nurse coordinator felt it important that he get there and get admitted today.

We left around 2:15 and arrived around 3:45. When I left at 9:15 Will had been evaluated by 3 separate medical specialities (ER, Medical, and Pulmonary/Tx) and a total of 5 doctors. (Ours is a teaching hospital, so, you know, there are always a lot of people involved.) The good news is that Will seems to feel comfortable with the doctors who will be following him in the hospital (Medical and Pulmonary/Tx), and to me they seemed pretty on top of things, thoughtful, and listened well. I've definitely had much worse feelings about his hospital team at other times. (Teaching hospital = pretty much never the same doctors in the hospital, ever. Except the supervising pulmonary/tx doctor will probably be someone he has seen before.)

He'll go on broad spectrum iv abx tonight while every blood test imaginable is run and sputum cultured. Tomorrow he'll have a bronchoscopy, which is a serious test, but so far he has always tolerated them, and we'll hope to start to hear something back from all the labs.

He was in good spirits when I left. He always feels better in the evening anyway, and the hospital is a familiar place for him as much as he doesn't like being there. It's always worrying. This time as much because of the specific event as what it reminds us about this year and what the future could hold. This is Will's 3rd or 4th hospitalization this year. (I'm officially calling it the 3rd, but I just can't remember for sure.) Besides that, he was on iv abx one additional time, with a picc line placed while he was an outpatient. Each time he needs treatment for lung infection/pneumonia it's a little harder for him to recovery completely and get strong again.

So, we go on and hope that this time they will figure out an effective treatment quickly and that we can come up with a better every-day routine so he can recover fully and stay well longer.

Monday, August 3, 2009

The other side of the fence

Is where kitties play and Liam really wants to go. Lovely walk tonight in search of friendly neighborhood cats to pet. None were found. (I expect they, umm, hear Liam coming and take refuge wherever they can run to. He is always sweet to them, but he moves fast, not really at a comfortable cat pace.) We consoled ourselves with handfuls of blackberries from the bushes in the neighborhood stream corridor/nature trail area.

Will's fever was back and even stronger this morning. His lung functions are down and his saturation is down too (90% on room air, which is, well, not so good). So, he is thinking about what the plan should be. I'm voting for inhaled antibiotics (which he already has here) plus call the clinic for a prescription for oral antibiotics and if it's not getting better by Monday go in to the clinic for cultures and picc line placement and start IVs. (Or, if it gets worse, then he'll get admitted through the ER before Monday.) We'll see.

Sunday, August 2, 2009

First bee sting and fever

On Friday Liam got his first bee sting. We knew it was coming, even as we have been trying, trying, trying to encourage him to not touch the bees. We have some lavender and marjoram plants by the front gate, and the vegetable garden right beyond. The area is always full of bees and Liam has lately made it his life's work to try to catch one. Well, he finally did and the joy he felt in that accomplishment was quickly evaporated by the shock and sadness that his beloved bees could betray him in such a way.

He cried and cried. I'm sure because it hurt but also, I'm sure, because he just couldn't understand why the bee would do that to him. He would cry and cry and then sob "beeeeeeeeee." This went on for 15 minutes or so until he calmed down. We put an ice cube on his finger and all seems to be fine. I guess that if an allergic reaction is going to show up it is not until the second or third sting. So, we'll have to watch even more carefully from now on.

In other news: Will has not been feeling well and today has chills and a fever. So, we'll have to see where that goes. It is worrisome, as always. I think he's more congested than usual. He says it's hard to tell and has not been interested in checking his lung functions with his home meter. Monday is CF/transplant clinic day. If this gets worse after Monday it likely will mean a trip to the ER. Or, maybe he holds out until his appointment which has been moved up to the 17th. We'll see. Experience tells me to agitate for an early assessment at the clinic and, if necessary treatment. But, it's not up to me.

Saturday, August 1, 2009

Umm, how did this happen?

Oh dear. Zucchini out of hand. I guess it has been hiding under the leaves or something. It's only two plants for heaven's sake. When I planted them, I had visions of stuffed, fired blossoms and tiny, delicious squash. Right. Now, it looks like I'm on to bread and cake. Luckily, I'm not the only one in this boat. I can't wait to try the bread and cake recipes linked to here. Anyone who also plucks her own chickens is a-okay in my book. I am not that brave. (And, we're not allowed to have chickens b/c of Will's lung transplant, anyway.) Any zucchini ideas anyone?