Charlie Harper & the Beach

Traveling for work this week, but going home tomorrow. My work, if you can believe this, is actually right on a beach on the west coast of Florida. I am spending most of the days hours in the hotel meeting rooms, working, but did get to walk out to the beach tonight to put my feet in the sand and watch the waves. Also, have been sleeping with my hotel windows open and waking to the noise of the ocean.

I have the Charles Harper poster of the Alpine NW in the back of my car (still) trying to be on the way to be framed. I'm reminded he did a bunch of posters for the US National Park Service -- including one on the barrier islands, very appropriate for my current situation. Also, the Rocky Mtns. -- I love the colors. Updates on Liam and Will this weekend. The report is that both are fine. Liam is trying to convince his grandparents that I've been whining about nothing and he really does go straight to bed and sleep through the night every night. Will continues recovery from the most recent pneumonia; his energy is slowly returning, I think.

Dog Bone Phone & Inauguration

Finally today. . .Liam has decided that Mollie's green toy dog bone is a phone. If you look at it, you can see how he might have got this idea. It is shaped sort of like a phone. Anyway, he grabbed it from her toy basket the other day and has been running around using it as a phone ever since. We think he's calling Grandma KM and Grandpa DM in California.

We feel so happy and hopeful tonight about the inauguration and this chance for change. It was reported that Liam watched the address with GG and clapped along whenever the crowd on television did. So sweet.

Bad Teddy Bear

Liam thinks it is really funny when other creatures in his world do naughty things. For example, when Will's parents' cat gets scolded for pushing papers off the table (or being on the table) or whatever, Liam thinks it is hilarious. This has recently extended to Teddy Bear who simply cannot seem to get hold of the rule that your bottom has to stay on the bottom step unless Mommy or Daddy gives you permission to go up the stairs and is with you. Liam understands this rule well and follows it pretty well, rarely going past the second step even when he "forgets." But Teddy Bear, well, he just doesn't get it. He always goes up to at least the third step. These (blurry) photos capture Will and Liam discussing this problem with Teddy. You should have heard Liam laughing.

High Tech Temperature Monitoring

We made fried chicken last night. Well, I started it and then became so impatient with the cooking that Will finished it. Ten minutes a side my. . .butt. This is Will checking the temperature of the cooking oil with the laser infra-red temperature taker that Auntie C gave him for Christmas. Who knew it would be so useful? The chicken tasted okay once it was (finally) done, except it lost some of its crispness on account of being finished in the oven. Wrapped in tin foil. (The tin foil was my idea---not a good one---not Will's.)

Still diapering all the stuffed animals around here, you?

Liam is not sick of having us put diapers on everything yet. He insisted today that Will had to diaper Teddy Bear on the kitchen table. The floor or the coffee table would not do. He watches very, very closely. Note Liam's new hair cut. We trimmed his bangs today. His hair grows like a weed.

The baby loves his broccoli

Isn't that something. He likes to eat the stems and spit out the florets and hand them to me. (Thank you!) We're working on some version of: okay, you don't have to eat it, just set it aside. When you eat steamed broccoli with that much enthusiasm, it is exhausting.

Will & Liam's Ragtime Band

Liam received a number of musical instrument toys for Christmas and he and Will have been playing with them. Liam loves anything he can shake or pound, but he is reasonably careful with the musical instruments. He wants the striker for the drum to go with the drum and the striker for the xylophone to go with it. He doesn't generally hit the drum or the xylophone with things other than the strikers (we have encouraged this). He will play on his own with these things, but he prefers if someone plays with him. We have got to cut Liam's hair, it is a mess and always in his eyes.

Will continues to slowly recover. Some days are better than others. He's off most of the antibiotics (except the ones he takes all the time related to the transplant), and his oxygen saturation has been going up and is now pretty reliably in the low 90s as measured by his little home o2 reader (I can't remember if that reads higher or lower than the hospital meters, but it's close either way). He has a check-back with his regular pulmonary doc on Tuesday, so that should tell us more about how things are going.

Fondue

We were going to have fondue on Christmas eve but the snow storm and the sickness got in the way, so we reprised it today with Grandpa DM and Grandma KM visiting for the weekend. Delicious -- thank you GG.

Will seems to be recovering; he has been much more active Friday and today just moving around the house and eating and drinking more reliably. This tires him out a lot, but it's better for him. Friday he finally checked his oxygen saturation and found it to be in the mid 80s. He said: never below 80, never above 90. I think that was a little bit of a wake up call. Today the numbers seem a little better, maybe moving the range to the mid to upper 80s. Good news.

I had a quiet day because Grandpa DM and Grandma KM had Liam all day and will take him part of tomorrow too. This meant I could do house chores, etc., today and leave my work for tomorrow. Very nice -- thank you!

Liam liked fondue but we didn't give him much because it's basically cheese melted with 3 cups of wine. So, you know. . .he's pretty little still. He was a very happy, chipper baby all day today, singing and playing and chirping along. And he couldn't believe his luck to have both Grandmas and both Grandpas to the house for dinner, plus Will's friend J who stopped by this afternoon and stayed. All in all a delightful evening, and since Liam missed his nap today he went right to sleep no fuss no muss. Really, delightful.

Some forward, some back

It's great to have Will at home, but he's still very sick and feeling awful. This affects his eating and drinking and I'm getting pretty concerned about his hydration. Unfortunately, guess what?, asking 25+ times a day whether he has had anything to eat or drink, or if I should get him something to drink, etc., etc., with many variations on that theme does nothing to help and only annoys the crap out of him. I'm worried about the c diff. I still don't know how we know if he's getting better from that or when it will be rechecked. Will doesn't say more than "I'm getting better" and "in a few weeks." But, today his is noticeably worse than he was yesterday.

In the good news department: Grandma KM and Grandpa DM are in town for a visit this weekend. Liam ran circles around the house this evening he was so happy to see them.

Will is home!

He called from the hospital around 3:00 to say that his physical therapy had gone really well and they were sending him home. He's on the border of where they would want home oxygen, but he saturated really, really well on the going up and down the stairs test, and he didn't fall, so they figure better at home than in the hospital. We couldn't agree more! He arrived around 7:30.(Hospital discharges always, always seem to take forever. This one was complete just in time to pour Will and Doug into rush hour traffic in the middle of a huge rain and wind storm.)

IV antibiotics arrived safely and are already safely in the refrigerator for the 10:00 dose. I don't know really anything about his discharge orders or follow up, but I guess I'll find out in due time. Right now we're just very glad he seems on the mend and is home safely. Thank you so much to Grandpa DH for being with Will today and waiting through all the hospital discharge stuff, and piloting the long drive home in the rain.

This morning I got to do something I never thought I would

I wrote Liam's name and phone number on the label inside his new coat. He is such an unexpected gift, our little baby, one we never thought we'd get. (And, expensive kids items like coats apparently come with places to write the kid's name built in---who knew!)

I'm tired

I'm tired. Liam wouldn't sleep until almost 9:15 tonight; this after exactly the same routine that worked so well yesterday except that today for some reason when I took him upstairs at about 7:20 he just would not sleep. So, after almost 2 hours of rocking, squirming, fidgeting and some yelling and crying (not conducive to sleep at all) he is finally asleep and I'm tired. In the meantime, the chicken stock I was making boiled down to almost nothing and the poor dog was so ready to come inside after her 2 plus hours outside in the rain that she about broke down the door when she saw me coming downstairs. (She does have a dry dog house and a dry covered porch.) I intended to make macaroni and cheese tonight because we have a whole half gallon of milk that must be used today because Will hasn't been in the house to drink it, but I don't think I have that in me right now. No fear, because another gallon and a half will be delivered tomorrow that he also won't be in the house to drink because I forgot to email the milk delivery guy from work today.

This hospital stay has seemed particularly hard for some reason. Maybe it's because Will turned out to be so seriously ill. Maybe it's the holidays or that he was so sick at home for weeks before he finally went to the hospital. Maybe it's because Will sounds so down and subdued whenever anyone talks with him (that's when he answers the phone to talk at all; mostly I talk with the nurses). Or that we're all sick with the same or different crud to some degree. (My cough has moved into my chest and makes me sound like a smoker.) Everyone is stressed out from the driving back and forth to Seattle, or the feeling guilty (at least I do) when they can't be there, and just from worry both about Will's recovery, and about how he'll cope once he comes home if he doesn't recover as quickly or fully as we all hope he will, and about how we'll keep Liam's new school/daycare related germs away from him so he won't get sick again. Whine, whine, whine.

The actual clinical information as I understand it from just talking with Will's nurse (Tom, pretty much my favorite this stay) is: after a rocky start Will had a pretty good day today. Tom reports that Will ate a good dinner and that a picc line was successfully installed, so that should be a more comfortable way to deliver the IV antibiotics and it means Will can bring his antibiotics home with him when he's ready. Doug was there earlier today and Will ate breakfast and read part of the Sunday NYT. Will fell again last night, and had a consequent CT scan of his head this AM. Nothing is wrong with his head that shows up on CT apparently. Ha Ha. The falls are frightening; Will has had these falling episodes before and there is no clear explanation. Last night's fall did result in a physical therapy referral, which means that Will had to walk the halls today with PT and will have to every day he stays in the hospital, sometimes 2x a day. Poor Will. All this being sick and having a hundred people tell you what to do all the time must be so frightening and unpleasant. I know that all he wants is to be himself again. . .but it has been so hard finding and adjusting to his new limits after the cancer, rejection, spleen removal, pneumonia, cancer, pneumonia, aspergilious, etc., saga of the past few years. And now this set back. When I talked with him briefly around 5:00 tonight he sounded down but reported that he thought he felt better and that his oxygen was "better."

Aside from the not sleeping, Liam had a pretty good day today, and a great evening. He was interested in dinner and ate well, played well and even played some with Mollie in a way that Mollie could relate to, and he loves his new story/snuggle time.

Sunday night report

Nothing new to report tonight. Will is stable at the hospital. I talked with him on the phone earlier today, he sounded pretty down. Just tried to call again and talked with his nurse who reports that Will is saturating at 95% on between 2 and 3 l of oxygen, that he ate a good dinner, but that he seems "depressed." We talked about moving the oxygen down to between 1 and 2, and slowly trying to work Will to saturating well on room air. When I talked with him this afternoon he mentioned the possibility of coming home on oxygen. . .he's not happy about that, but we know that home would be a much better place for him to recovery than the hospital if he's stable (and provided we can do a better job keeping my and Liam's germs away from him). At home Will will be much more active, even just walking from room to room, and that activity will really help his lungs clear and start to recover. Doug will go up and visit Will tomorrow, so hopefully that will help.

Dinner with GG and Grandpa DH tonight. It's snowing here again although it is supposed to turn to rain later tonight. Made a small switch in Liam's bedtime routine that made a big difference. Bath at about 6:15 PM and then PJs, brush teeth, sucky (pacifier) and downstairs to snuggle quietly for story time. Upstairs with milk and to rock at about 7:15 and I kid you not he was asleep and I was back downstairs by 7:35. This translates into him being asleep 25-30 minutes earlier with, and this is the best part, at least 30 minutes less of rocking and fidgeting and fighting sleep. Previous routine was story time, bath (at about 7:00) and then PJs, sucky, milk, rock and sleep. So, let's hope it's a real breakthrough and not just a fluke.

Not much news today

What a boring start. Will seems to have hit a plateau at the hospital. When I talked with him tonight, he's still on 3 l of oxygen delivered by nasal cannula. When he goes on room air his saturation drops into the high 80s (better than the low 80s, which is where it was when he was admitted, but still not good). They could set him up with home oxygen, but he wants very much to be off oxygen when he comes home. In the good news department, he seems to be eating and drinking quite a bit more. In the not so good news department he reports that the nurses wake him up every 20 minutes all night long to take vital signs, weigh him, deliver forgotten medications, and whatever else. Even if this is a little bit of an exaggeration, it sounds like he isn't getting much sleep. Ann visited him today and reports that he seemed much better in the afternoon than in the morning. So, today's progress was eating, hopefully tomorrow's progress will be activity and then on to feeling better, off oxygen, and on the way home.

Liam and I had an okay day. We joined the food co-op, I guess that's our big news. And, while I was putting Liam to bed the neighbors dropped off what looks like the entire Baby Einstein DVD cannon. Great. . .Liam will be thrilled!

Sure, I can put a diaper on a bug. . ..

Liam is going through a phase where he wants diapers put on everything. He gets the diapers from the changing table in his room and he carries them all over the house with whatever he wants me to diaper. Then he'll make the "help" sign, and hand me the diaper and the thing and away we go. Over the past week or so I've been asked to diaper teddy bear, Dapper Dan dress-up doll, polar bear, train (I said that trains don't wear diapers) and, tonight, bug. The diapers don't stay on long, he is really engaged in watching them go on and then pulling them off and then asking me to put them on again. I have no idea what this is about except I hope it is some kind of sign that toilet training is near. It's a little tiresome, to tell you the truth. Plus we end up with these crumpled diapers all over the downstairs and even though I know, know, know they are clean, it gives me a sort of visceral shock each time I see one on the floor under the dining room table.

Not much changed for Will at the hospital today, so that's good and bad. He fell early, early this morning when making his way to the bathroom and the nurses made a big deal out of it, and he didn't like that, so when I got there to check things out he was pretty unhappy. It actually sounded kind of like kind of a bad fall and a big deal when they described it to me over the phone; but the doctors think probably some combination of not quite right blood pressure / blood sugar / fluids and it is dark, and he's been inactive, and he's sick, and don't forget he lost his vestibular system. His blood pressure was sort of all over the place this morning but is stable now and back in the normal range.

So, now begins the long recovery. They think they're treating all the stuff that they can treat (there's no treatment for the original parainfluenza viral infection), he is responding well clinically in that his demand for oxygen is staying the same or going down, his fevers are down, and he reports feeling some better, although tired. We just have to hope that all these drugs keep working and Will can get his strength back sooner rather than later. The hospital is a dangerous, bug-infected place to be especially if your immune system is suppressed, so we'd like him home as soon as it is safe for him to be here. (And, of course, I have to figure out how to make home safer, since Liam and I undoubtedly vectored in the bug that made him sick in the first place.)

I saw Will's regular pulmonary doctor in the hall as I was leaving this evening. Thank you medical scheduling powers that be, Will's regular doctor is also covering the hospital this weekend. So, he was going to check on Will tonight and Saturday and Sunday. Ann will go up tomorrow and we'll see about Sunday. Will's regular doctor asked me how Will was doing and when I replied "medium" he said "well, this really knocks you on your butt; he's not going to just bounce back, it will take a while for him to feel better." This is both encouraging, in the sense that the expectation is for Will to get better, it will just take a while, and sobering since Will probably won't develop normal antibodies to this virus, and it's everywhere, which means he could get it again from me or Liam or whoever.

Thank you to GG and Grandpa DH for taking such good care of Liam all day (again) and sending me home with dinner tonight. I really needed it.

PS -- Happy New Year Everyone

And, sorry to any friends and family who are newly checking out this space from the address in the Christmas cards right when it is totally taken over by Will being in the hospital. It is a good way for me to make sure everyone has access to everything I know about how Will is doing and that was one of my intentions in starting it; but, it's also meant to be a place to fill you in on how Liam is growing all the time and other, happier, aspects of our lives. I'll try to get more of that type of content posted again soon.

Some improvement today

A really nice thing happened at the hospital today, the pulmonary doctor covering the service for the holiday was Will’s regular doctor, the doctor who has treated him for something like the past 15 years, since way before the transplant. I can't really say enough about how helpful and reassuring this is to all of us, especially Will who tends to take a little time to warm up to new doctors (and who can blame him---all the questions, all the weird theories, etc.) One of the most frustrating things about the hospital is that on admission you almost never, ever see one of your regular day-to-day doctors, instead you see a series of doctors in training on various services who are consulting with (they say) your regular doctors.

The upshot is, the regular pulmonary service who sees Will all the time doesn't think Will has a fungal infection in his lungs and have discontinued treatment for that. This is very good because the drug for this treatment gives Will terrible headaches and the infections disease doctors were starting to talk about a spinal tap---I know they have to be conservation, but, really, Will can tell them the drug gives him bad headaches, exactly the same every time he has taken it, and these headaches started with the medication. . .still, I understand that it would be horrible to miss something. . .but this is exactly the hazard of massive numbers of new doctors at every hospitalization.* Will always cultures positive for the aspergilus in his lungs because the fungus is everywhere all the time, so just because it's in the lungs doesn't mean there is an active infection.

They also don’t think he has an active cytomeglovirois infection (hooray!) and are working with the infections disease doctors to discontinue the ganciclovier. In fact, all they found was shell vial (dead virus, basically) which is always there, and the levels of CMV in Will's peripheral blood are lower than they have been in the past. This is more good news because the ganciclovier is pretty famous for wiping out bone marrow and Will needs all the healthy blood-production capacity he can get right now, so we have been agitating for pulmonary to weigh in on this and to check the peripheral blood levels and are super happy with the result, first because it means Will doesn't have yet another very nasty virus to fight off and second because the treatment for CMV is so counterproductive if you don't really, really need it.

The current theory is that Will is really sick with the parainfluenza (Which is not the flu, but instead a poorly named virus that causes nasty colds and upper respiratory tract infections in most people, for example, me right now; but can easily cause lower respiratory tract infections in people with weakened immune systems, like Will.) pneumonia and the pseudomonas flair up, but unless something goes sideways (always a possibility) he should recovery fully, it will just take quite a bit of time. (Think: many weeks to be back to normal; although I think they'll send him home from the hospital as soon as he is off oxygen and doesn't have fevers.) So, as silly as it sounds it feels like huge progress to be down to just one type of pneumonia plus a bacterial infection.

Will reports feeling some better today, partially due, I think to them discontinuing the voriconazole, which gives him terrible headaches. When I visited Will was able to talk some, watch television, and eat a (very small) lunch. When I talked with the nurse just now he reports that Will is saturating at 93-95% at 2 l delivered through nasal cannula. So his oxygen requirements are down, which is good. Hopefully he’ll eat dinner and continue to feel better and start to recover.

Liam is doing okay, has a little cough that I may take him to the pediatrician for if it doesn't start to improve. I feel like crap but am hoping this is a short-duration thing and as long as I keep up with the Tylenol and decongestants I'm pretty functional. I've been waking and sleeping in my new hat from Grandma KM and it helps a lot, so thanks mom, you are helping even if you don't think you are. Mollie is going nutso from being inside all day every day, but that's just what happens when Will is in the hospital. She too will recover.

**A note: I understand and actually subscribe at least in part to the theory that new doctors are good because they will be more conservative and may spot things your regular doctors misses because he or she is inured to you and your complaints. But, it has to be a team effort so you don't end up with treatment that you don't need. It sounds like the new ID doctors absolutely could have taken a "wait half a day or so and see what happens" with the CMV and consulted with (either) Will's regular ID doctor who has many times chosen not to treat Will when his peripheral blood levels of CMV are higher than they are now or the pulmonary service, which could have brought the same historical perspective.