Saturday, December 18, 2010

Ethan is home

Finger painting (of a sort)
Hi everyone,

Just a quick note to let you know that Ethan is home. He was released from the hospital mid-day Thursday.

I'm sorry I didn't post an update here sooner. We've all been hopping and sleeping. Hopping to get stuff done and catching up on sleep after the hospital stay.

Ethan is still on IV antibiotics, 45 minutes at noon, eight and four am. His line infection is drug resistant, so he's on vancomycin, which is the biggest antibiotic there is. He's been on it before and did okay with it. I just hope he never gets an infection that's resistant to vanc.

Ethan will be on antibiotics through the Tuesday after Christmas. That means he'll be on it for the first few days of the drive to Minneapolis; which should add an additional twist to the road trip: potty breaks and hooking up IV breaks, lol.

The night before we were
discharged.  Ethan was packing
up and getting ready
to go. 
Anyway... Everyone is very excited that we're all home. The boys have been running and jumping on each other, and there's been a whole bunch of tickling going on.

Through it all, we've also been doing a lot of trip prep. The van's got new snow tires on it, and new chains in reserve. The dogs are over at Sarah's parents who will take care of them till we're back. Caleb's fish tank and his fish, snails and shrimp have gone to Mrs. Martinez's kindergarten class so the kids can all enjoy and help take care of the fish.

I'll be spending most of the next few days in the office trying to clear off my desk before we go.

For Christmas, I'm really hoping for a low key celebration. Sarah and I are really looking forward to Christmas with the boys. At the same time, I know that by noon, we'll start obsessing about getting the van packed so we can leave the next day. With any luck, the kids will be busy playing with their new toys and Sarah and I will be able to do what we need to do.

I'm sure, we'll post at least one update from the road. Talk to you then.

Peace and Merry Christmas,

Sunday, December 12, 2010

Dueling Infectons

Hi all,

Ethan's been diagnosed with Respiratory Syncytial Virus (RSV), a very common congestion/bronchial virus. In most kids and adults, RSV is no big thing and we fight it off after a few days of coughing and runny noses, etc.. 

For Ethan, since his immune system is compromised first from the immune suppressants (which he actually just finished coming off of a couple of weeks ago) and then the steroids (which suppress the immune system big time), he's having a harder time fighting it off.  For the last couple of days, he's been sporting low grade fevers. And his breathing has, at times, been labored.

This afternoon and this evening, he's been doing much, much better.  His O2 level (aka his saturation level or "sats") have been in the low 90s without the blow by oxygen.   He's been drinking more, which makes us think that his throat is less sore.  And this evening, his appetite came back a bit and he ate a couple of ounces of apple slices for dinner.

Looking at that bit of it, I'm really happy and I'd be thinking we'd be out of here tomorrow or Tuesday at the latest.  Then I heard a bang.  That was the other shoe dropping.

Just about the time that his respiratory symptoms were improving, we got news that he's got bacterial infections in both of his lines.  Ethan has a central line with one end outside of his body and the other end in a big vein near his heart.  The line has two external lumens and can be used to deliver IV medications or fluids for hydration and to draw blood for testing.  Anytime, someone has got a line, line infections are a big concern.  It's just really easy for anything to get into the external part and get carried right into the blood stream.

This is Ethan's second central line (his is a "hickman") and as near as I can recall, in the 13 months that he's had them, this is only his second line infection.  That batting average is decent.  But the infection is still a big risk and definitely not a good thing.

They don't yet know what type of bacterial infection he has, so they are treating it with a really big antibiotic vancomycin.  He'll get vanc doses every 8 hours until he has two successive negative cultures.  It will take some time for the vanc to take effect, and for each blood draw they wait 48 hours to see if a bacterial culture has grown before delivering a negative result.  Which means, theoretically, we could go home in 48 hours, but it's more likely we'll be here till Thursday or Friday--assuming the third shoe doesn't drop.

On the one hand, this is a fairly low stress hospitalization.  Ethan's doing pretty well.  His energy is pretty good.  Since he's got a respiratory infection, we're in isolation, which means that none of us can go outside of the room, and Ethan can't go down to the playroom at all.   But we'll all get over that.  The larger challenge is that Sarah and I have both been trying to get ahead a bit at work, and this makes that more difficult.

Sarah and I have been swapping out days since Friday.  One of us will take a day and a night and then the other will take over in the morning.  Sarah had yesterday and last night.  I took over for her around noon, and she'll be in tomorrow morning to take over again. Thankfully, Grandpa Bob and Grandma Pat are going to come in too, which will allow Sarah to telecommute from downstairs and still be around to talk with the doctors and monitor Ethan's condition.

As for the rest of the week. we'll play it by ear.  Sarah may end up with the lion's share as I'm trying to cram about 4 weeks of work into my remaining two weeks before I start my leave.  Fortunately, Sarah's not taking a lot of immediate leave when we get to Minnesota, so she's got a bit more leeway at present.

On a completely different note.
As I said, I took over from Sarah today about noon.  About 12:30, Sarah called to say that she was downstairs in the parking lot and her car wouldn't start.  I think I knew right away what it was.

Senior Caleb likes to play with the courtesy lights in the backseat of Sarah's car.  He has a tendency to turn them on, and then forgetting to turn them off when he gets out of the car.  I've mentioned to him a couple of times, that if he keeps doing that, one of these days, mom's going to go out to the car and the battery will be dead and it won't start.

Well, I'll leave it on that note and head off to bed.

Night all.


Friday, December 10, 2010

Winter &$/()@

Two days ago, Ethan's transplant doc here in Portland said that her biggest concern about Ethan's health leading up to transplant 2 next month was to keep him from catching any winter illnesses. 

Sarah and I had already kept Ethan home from daycare on Monday and Tuesday due to reports that there was strep throat floating around the daycare.  After the conversation with Dr. Nemecek, we decided to take Ethan out of daycare and keep him at home until we leave for Minnesota on the 26th.  Luckily, Sarah's parents were generous enough to agree to stay with Ethan at home during the day, so that Sarah and I could stay in our offices and try to clear our desks before we leave. 

Evidently, we weren't fast enough or careful enough because I'm writing this from the hospital where Ethan is in-patient being treated for some type of viral or bacterial infection.

Yesterday, Ethan developed a cough and runny nose, but was still energetically running around and playing. This morning he had a mild fever and low energy.  By 10a, his fever had gone to 99.5, he had no energy, and wasn't eating or drinking.  We brought him in to clinic so they could check him out.  By the time they checked him in at 12, his fever was 100.4.  An hour later it was 103.5, and an hour after that it was 104.4. At the same time, he was having trouble breathing, his blood oxygen level was 88, and his pulse was 170-180.

The folks here have drawn blood to culture for bacterial infections and done swabs for viruses.  The strep tests came back negative.  Unfortunately, the tubes they used for the virus tests were a month out of date, so the lab won't use them.  And as they've already given him a broad spectrum anti-biotic as a prophylactic, they don't see any point in running another culture.  I'm not quite sure how that works and will have to follow up with them in the morning.

Fortunately, after a pretty rough afternoon, Ethan is doing somewhat better now.  Tylenol and ibuprofen have brought his fever down nicely.  He's getting some iv fluids to keep him hydrated.  His energy came back a bit this evening, enough for him to joke around and wonder why the hospital computer systems are too slow for him to watch Caillou. 

The docs took some X-rays and say there is no fluid in his lungs, so no pneumonia.  When they listen to him, they say that all of the congestion seems to be at the top of his lungs, like bronchitis. He is asleep now for the night.  But he's still having some trouble breathing and his pulse, even while asleep, is 165-170.  So, he's still working hard.  He's getting blow-by oxygen, which is a tube of O2, blowing near his face.

I think this is mostly a rest and support hospitalization.  They'll wait up to 48 hours to watch the bacteria samples.  If something grows, then that's evidence of a bacterial infection which means more antibiotics. If it's a virus, there's not a whole lot they can do that they're not already doing and we'll hope it passes quickly.

All of which means that we'll be here at least until Sunday or Monday. But it should be a pretty low key stay, even though we're in isolation which means Ethan can't go down to the play room.

The Transplant Drive
Sarah and I have long been in agreement that we're going to drive out to Minnesota.  Since we're all going to be out there for six months, we figure we'll need a car.  

A lot of people we talk to, parents, doctors, people on the street, think we're pretty nuts to be driving a medically fragile kid from Oregon to Minneapolis over the Rocky Mountains in the middle of winter.

They may well be right, but here's how we see it.  Sarah and I are pretty much a team when it comes to the kids.  And the thought of splitting up for five or six days while one of us wears themselves out driving and the other wears themselves out shepherding two kids on a plane and then hanging out in Minneapolis waiting for the other to arrive, means that by the time we're back together we'll both be wiped out.

I will also say, that I'm not convinced that taking Ethan on a plane with a whole bunch of potentially sick people breathing the same air for 4-6 hours is a good idea either.  At least if Caleb gets sick on the way, we can make him ride on the roof. 

But we haven't ignored their concerns completely.  The shortest route from Portland to Minneapolis is through Spokane, WA then Montana, North Dakota, etc on I-90.  I read up on that and talked to some folks who have driven it in the winter and it looks like that might involve a lot of white knuckle driving and some days in hotels along the way waiting for the highways to be cleared.

So, we've decided to take a little longer, and a little more southerly route, through Boise and Nebraska and Wyoming. It's still over the mountains and that may be a challenge. But it's not the 1800s and it's not Donner pass.  We'll be on the interstates the whole time, and they will get cleared fairly quickly.

It will certainly be an interesting change of pace for Caleb, lord knows that kid doesn't get enough vacation time and changes of scenery. (Yes, I know, "what scenery, it'll be boring snow covered plains.")

And finally, in all honesty, part of me is looking forward to 5 days or so of downtime without any work and before the madness starts in Minnesota. (Remind me that I said that.)

Anyway, that's it for now.  We'll update more when we get out of here or sooner if things change.

Thanks for being there.