Home At Last

Here it is 10:30 on Saturday night and we are in fact at home.

Somehow, this didn't work out as straight-forwardly as I had expected. Earlier in the week, in response to one of my posts, our friend John remarked at how difficult it can be for doctors to see the patient in his entire context, rather than as a technical problem to be solved or case to be managed. John works in healthcare and has spent 25 years dealing with doctors, and has a lot of experience around the healthcare system in various capacities.

His comment got me thinking about all the difficulties we had with Zac's IV, and by Saturday afternoon I had decided that if there was a problem with the IV, we could be done with it. It was that realization that Zac was the patient and he (and we, as his parents) had the last word on his care. Not to be stupid of cavalier about it, but to bring our best judgement to bear with the information we got from the doctors and make what we felt would be the best decision for him. If we were trying to strengthen his immune system, and his white count was normal, he'd be much better off at home where he'd be happy (and stronger in that way in which the mind and the immune system interact) than he would be at the hospital.

I hadn't quite made it through that logic chain to the point where I realized that he could come home Saturday night until our friend John arrived. When he saw Zac (and as I've said, he has a lot of experience with people in hospitals), his reaction was, "What are you still doing here?" Reenforced by the night-shift nurse's reaction of "What are you still doing here?"

Zac was a willing co-conspiritor, and while I was out at the first at of a local theatre production (which I left when I realized it was stupid to be there when Margy and Zac and John were being social in the hospital - the I'd gotten the ticket earlier...), and while Margy was out getting Indian food, John and the nurse and Zac got together and planned. The nurse called the doctor (not the one who we'd seen most of the week, but his partner, who was on this weekend), and long-story slightly shorter, she arranged for the discharge.

Margy, Zac, John, and I arrived home fairly short order at about 10:30PM. Zac dozed on the couch while the three of us chatted for quite a while. It was very pleasant all being home.

I wondered why it took an external catalyst to make this change happen, and realized that the dynamic between patients, parent, and doctor is really not designed for proactive participation by the parents, at least in this kind of emergency situation. Perhaps we should of second-guessed the surgeon when Zac was in extremis on Friday, but I think not. It was more like, "Our son is really sick, you know how to fix this, do what you need to do."

On the other hand, by late in the week, we needed a lot of information to be able to make an informed decision about how long Zac should have remained in the hospital, and we weren't asking for that. And finally we needed the perspective and gumption to say, "This is the wrong plan for us. If you need a blood sample every day, we can bring him in. What should we be watching for? Why not do oral antibiotics at home? He needs to be home."

It was hard to transition from one mode to the other. So John was our catalyst to do that, and we thank him for it. (Plus for being such fun to be around, and a generous guy to boot!)

So I don't know if there's a wider lesson in that or not, but I put the experience out there for you all to contemplate. We're just happy to be home!

And then sometimes it sucks

Zac's white blood cell count is finally in the normal range. But his temp has been a little elevated over the last 24 hours. The surgeon we've been with during this entire process is off this weekend (I was wondering if he was ever off), and the hospital's other surgeon came by and said they were waiting for the temp to be normal for 24 hours.

I think at that point the whole thing came crashing down on Zac. He's very upset. Compounded by the fact that the IV he has seems tenuous - it doesn't hurt most of the time, but he (and we, and the nurse) are trying to figure out if it's well placed. Getting this new one in yesterday was quite a hassle, and required the resident expert at these things (who happens to be A) the ER nurse we originally saw, and who placed his original line 8 days ago, and B) the husband of one of the crackerjack nurses on the floor). So he really doesn't want to go through that again.

It seemed like we could get this one to work for the last two anti-biotic treatments, but if we're here for 24 more hours, I think we'll have to be really careful with it. The current nurse is totally with the process, but honestly, there is some variation among the nursing staff, and I suspect we'll want to stay on top of them so this doesn't turn in to a problem.

So if you had any thought of visiting, this would be a really good moment - we (all) are going to need as much distraction as we can get today.

Progress, but not as much as we would like

The good news: The surgeon came by and closed up the rest of the incision.

The bad news: Zac's white cell counts are still on the high side of normal, and his temperature is a little (and I mean a very little) elevated. So it's 24 more hours of anti-biotics and the expectation that he'll be out of here tomorrow.

After reading the chart, the surgeon thought long and hard about where to go with this, and that's what he finally concluded. Though not how we wished it had come out, given the circumstances it's a decision that makes perfect sense.

At the end of that visit, Zac's anti-biotic (every 6 hours) was finishing up and he remarked that the IV site was feeling sore. The nurse is going to have the phlebotomist (?) come by, but me might end up with a new IV. At this, he is seriously annoyed since he says they're very uncomfortable to put in. I don't know, I've only had one briefly.

Zac & I watched another disc of Lord of the Rings last night on the Mac that's on loan, and concluded that Macs are much better at reading damaged DVDs than PCs are - it just very nicely says "skipping damaged part of disk" and goes on. Mostly, you don't notice. So I guess we need to use Meg's IMac to read the second LOTR disk and copy it so we have something playable on all players.

Thanks for all the comments, cards, and e-mails. They really do make us feel connected and we appreciate everybody's thougths - humorous, serious, and other (?).

Aside from that, it's pretty quiet.

Jordan

Eating and Geeking

Yesterday culminated in a rollicking five-person card game with Zac's friends Neil and Stuart and their mom Diane, so Zac has chosen a quiet day today. However, lots of good things happened -- he was disconnected from his saline/dextrose drip, so he's only connected to a bag of fluid when they are putting antibiotics into him. And he got to each actual (if bland) food today! Mashed potatoes and pork went down very easily, a rice krispy treat not so well.

The three of us have been sitting around here most of the day working and playing on our various laptops. It's just exciting for Zac to be able to walk down the hall without pushing some medical equipment along with him. And -- hamburger for dinner! Jordan scored some ketchup from the cafeteria, even though it's not on the approved list for bland diets -- we like to live on the wild side.

Slow but Steady

We just got another visit from the surgeon - he's been in every day monitoring Zac's progress and deciding about closing up the incision. Today's news was mostly good: On from clear liquids to not-so-clear liquids (including chocolate milk)! And the IV will only be hooked up for antibiotics.

The sobering news is that his white blood cell count is still a tad high, which is why the antibiotics continue. I casually remarked to the surgeon that I was surprised at how persistent the infection was, and he (in his very measured and balanced way) said that the amount of periotonitis that Zac had was serious and that he wasn't surprised that it was taking this long to clear up. I think it's only sinking in now as to just how narrowly we dodged this bullet - and though we're 98% of the way there, we not all there yet. It will be good to get out of the hospital, but that goal always seems to be two days away.

We had tickets for Cirque Elioze at the Flynn for Wednesday. When we thought this was going to be simpler, we had fantasies of going together. In the event, Jordan went with Lindi and managed to eat at A Single Pebble, which I've been wanting to do for a long time. Margy did double duty at the hospital Tuesday and Wednesday nights.

I think a high-point for Zac was when his friends Neil and Stuart (and their mom) came by for a long session of the card game "Munchkins," which passed most of the afternoon and early evening rather pleasantly. Jordan got roped in to the early part, and Margy took over for him after he left.

Zac's fencing coach came by, but not finding any "Zac" or "Isaac" Young's registered at the hospital, went home. Now I have guilt for having named him "Christopher Isaac (Zac) Young". I'm afraid this is going to be a hassle for the rest of his life. He can change it if he wants, I suppose.

Margy and I got a fair amount of work done early in the week when Zac was sicker, but now that he's more active, it's harder - we spend more time playing games and hanging out. Overall an improvement, but not so good for productivity. As I mentioned, there is wi-fi in the room and Zac has spent some time on a lovely MacBook that's been on loan to our house from our generous friend John. It also plays movies far more effectively than my old laptop.

So Zac's finding ways to pass the time. The nurse pointed out that, had it not been break week, Zac would have had a tutor starting Monday. That would have been a laugh since he was barely conscious. Depending on when he can get back to school, we may end up doing that next week. Margy has e-mailed his teachers and we good a lovely note from his World History teacher.

This isn't exactly the kind of routine one wants to settle in to, but it has given me a little more insight into what it must be like to have a chronically ill child - an experience I would gladly pass by, thank you very much. But we do have a scheme for how things go, in place now just as (I hope) we no longer need it.

The Boring Part

Zac is on clear liquids now, which is a great change of pace. He's also down to one IV (down from a total of five hookups when he came out of the OR). Zac did have a single room, which had no view but good cell coverage. Now he's the only person in a double room with a lovely southern view and a lot of light, but no cell coverage. Go figure. The wi-fi signal here isn't as strong, but it seems good enough.

I had fantasies of his going home tomorrow, but before I got here the surgeon came by and looked at the wound. He decided to wait another day before closing up the last of it. Zac's white blood cell count is also still a little high, so I think they're upping the IV anti-biotic. So now Friday looks more possible, but that assumes progress, so we'll see.

People have been very generous with the dinner offerings. Normally we eat well off of our left-overs, but of course we cleared them all out for the trip that didn't happen. Margy and I have been alternating nights at the hospital, but the other person just seems to go home to sleep and do the minimum necessary (chickens, cats, etc). So we've been eating well off of the largess of others. Nice to have friends who cook so well.

We may try to get some of Zac's buddies over for a Monopoly game this afternoon or tomorrow. Meanwhile Margy and I work (when not posting to the blog), which is kind of odd.

No more nose tube!

The doctor came by at midday yesterday and pulled out the naso-gastric tube, which was way longer than we realized. That's one fewer tube attached to Zac!

The plan for Wednesday is to start clear liquids to see how it goes.

Lots of Progress

Not only is Zac feeling much more like himself, but, earlier than we expected, the surgeon came by and removed his nose-tube. Since that was actually the most uncomfortable part of the whole event so far (aside from the occasional dressing change), this is big news.

Zac is now pretty much himself (aside from the IV in his arm) and the remaining open wound in his abdomen (one inch, down from about five). But much more comfortable.

Progress, but not home yet

Saturday Zac was pretty zoned-out from the surgery, but we were all happy that the crisis was over and he was on the mend.

Sunday was slow, and by the end of the day Zac started getting pretty uncomfortable.

Monday was tough, with no visible signs of progress until....

After dinner-time (about 7 or so) things started to look up. His intestines began to show signs of life, and though he was still uncomfortable with the nose-tube, his cough had gone away. He just had better energy.

We (Jordan spent the night) got a good night's sleep thanks to nurse Dawn who grouped as many of her procedures at the beginning of the shift as possible. His intestines had showed signs of life Sunday evening during some of his walks, so the surgeon has left his NG tube disconnected, for possible removal later today (we hope) or tomorrow (more likely). That will be the biggest milestone in his recovery in terms of quality of life.

But his energy today is much much better. He's basically himself, but annoyed that this part isn't over yet.

We've discovered wi-fi in the room (though we probably wouldn't have used it beforehand anyway), so we may be on line a little more.

But for the first time since Friday, it feels like this could end, which would be nice.

Still not eating

Zac is progressing, but slowly. The post-appendix-rupture infection in his gut seems to have been defeated, based on his white blood cell count, temperature, and the way that the open incision looked this morning. The surgeon felt good enough about it to close up five of the six inches of the wound, leaving an opening the size of a peach pit. We expect he'll close it completely tomorrow. Fewer inches of open wound should decrease Zac's pain.

He still has very little energy, though, and his intestines don't show much sign of wanting to get back into the digestion business. Until that happens, Zac is stuck with an uncomfortable tube up his nose to drain his stomach. And it doesn't seem to work very well -- even constant fussing by the nurses doesn't keep the tube draining consistently. It's frustrating.

None of us realized how serious this was for the first day or two -- really life-threatening -- and how long it would take for Zac to bounce back. The drill is that he sleeps, takes a tiny walk, sleeps, does breath exercises, watches a video, walks, and sleeps again. Jordan and I take turns hanging out in the room, partly because he needs help getting in and out of bed, and partly because we can't think of anywhere else to be.

Zac's appendix adventure

Who knows when Zac's appendix burst -- it could have been as early as Wednesday -- but what appeared to be a garden-variety stomach bug escalated into enough pain that Jordan took him to the ER at 5am Friday morning. A cat scan showed a lot of fluid in his abdomen, so they operated through a 6-inch vertical incision just below his navel. There was goo all over his innards, so they removed what was left of the appendix and all the yuck they could find. They left the incision open so that they can monitor it for infection for a few days before they tape or stitch it shut.

Friday night night, Zac had every known tube and wire attached to him. The spinal block wore off at about midnight and they gave him a morphine machine not unlike the one that my mom had when she was dying of cancer. It doesn't drip though -- he can push a button to get a small dose, and the machine won't give another dose for 6 minutes. He slept most of the night and today, although the nurses have marched him around the halls a few times, and he has to suck on a plastic gadget 10 times once an hour to get air deep into his lungs.

He can't eat or drink anything -- not even water -- until his digestion shows signs of restarting. He's got a tube up his nose and down into his stomach to drain whatever might be in there, because otherwise he'll throw it up. Now we know that stomach bile looks exactly like pond scum. He's got saline with glucose dripping into him, along with two broad spectrum antibiotics that we hope will knock off the appendix detritus.

Zac is pretty limp and uncomfortable, and talking is hard with the nose tube, so we'll see when he can talk on the phone or have visitors. We've been taking turns hanging out with him, and the nurses set up a fold-out chair so one of us can sleep in the room. (Our local hospital is a pretty excellent place to go through an experience like this.) The doctor is talking about a 3-5 day hospital stay. Until his guts heal enough that they can tape or sew the incision closed, and until he starts be able to digest anything, he's not going anywhere.