Home

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.

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.)

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.)

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.

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.

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.

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?