Wednesday, July 28, 2010

We're home!

Actually, we got home yesterday afternoon around 1 p.m. I had thought we were going to get out of the hospital on Monday, but then on Monday morning, they came and talked to me about some of his lab results. His hemoglobin was low, so they wanted to give him a blood transfusion. They also said that they had to adjust his lasix dose since he is now consuming so much more fluid.

I wasn't crazy about him getting a blood transfusion, but I'd noticed that his oxygen saturations were a little low over the weekend, which could be a result of the low hemoglobin. I also wasn't sure when they had drawn these labs...was it when he still had the really bad edema from the IV fluids? I couldn't remember. Being in the hospital really messes with your brain. Every day is the same, so it's hard to keep track of time, plus sleep and sensory deprivation, along with boredom, conspire to rob you of your mental acuity. I was a little confused about what was going on, but was willing to do whatever the doctors wanted to get out of there. Iggy wasn't there on Monday morning, because he'd been up at a wedding in Sonoma County on Sunday evening. Originally, we were all supposed to go to the wedding, but Magnus and I had to cancel due to his hospitalization.

But then a couple of hours later, the doctor came back and said that he had changed his mind, and that Magnus didn't need the blood transfusion. I was relieved, but also felt guilty for not arguing more about the blood transfusion in the first place.

Anyway, in parallel with the confusion about when we were going to get out of the hospital and what we needed to do to make that happen was the renewed potential that we might get to go on our trip after all. As you may recall, we were scheduled to go on a 2 week trip to the East Coast leaving this Saturday, the 31st. When we had our original consult with the pediatric surgeon, she said it would not be a good idea to travel so soon after surgery. But on Sunday evening, our regular pediatrician stopped by to see Magnus, and remarked on how well his recovery had gone, and said "and you still get to go on your trip!" "Do we?" I asked. Everything seemed to be going fine, but I'd assumed that cancelling the trip altogether was our only option.

The next day when I met with the surgery nurse practitioner I asked her about traveling, and she just shrugged her shoulders. "Why not?" she said, "if anything happens, they have hospitals on the East Coast."

But we still hadn't gotten clearance from the cardiology team. When the cardiology fellow came around to talk to me, I asked him and he was noncommittal. "Let's talk about it tomorrow," he said.

That night, Iggy stayed over at the hospital while I slept at home, and that night, our regular cardiologist came around to check on Magnus. Iggy asked her about traveling, and she indicated that she thought it might be OK, but wanted us to go for a shorter trip, and to skip our plans to visit Iggy's grandfather, who lives on a small island in Maine that is accessible only by boat.

But then the next morning, when the cardiology fellow came to talk to us, they told us that the team's recommendation was no travel for a month! I told him that our regular cardiologist had indicated that she thought it was probably OK, and in the end, she actually ended up coming in and talking to them in person, and so as it stands, we are tentatively planning to go on a shortened version of our trip next week, as long as Magnus continues to do fine with his tube and a cardiology appointment we have on Monday goes OK. I really, really, really hope it does, not just because we would love to go on this trip, but also because at this point my parents have already spent a fortune on booking and rebooking air travel, and I don't want it to be for naught!

So anyway, we got out of the hospital yesterday with probable authorization to go on our trip. The biggest challenge since then has been adjusting to life at home with the tube and figuring out how the pump for his overnight feedings works. There are definitely pluses and minuses to life with a tube. In the minus category: Magnus is still clearly not quite adjusted to his new feeding volumes, so he fusses quite a bit at mealtimes, and had one big puke last night. For the moment, we are sticking with the feeding regimen we were assigned in the hospital. I know I said it was stupid, but there is something to be said for trying to get Magnus on a more normal feeding schedule (i.e. eating 5 times a day instead of a dozen or more times), and I'm hoping maybe this will help "train" his stomach. I don't think we'll do it forever, though, especially since we don't plan on asking his nanny to do tube feeding with him. There's also the fact that we have all this new equipment to deal with/worry about, although I suspect that as we get more accustomed to it, it won't be that big a deal.

In the plus category: the obvious answer is that we don't have to worry about feeding him enough calories every day, but to me, really, the biggest advantage is that we don't have to give him his meds by mouth! Before the tube, the worst part of my day, no matter how bad a day, was always the two times a day I would give Magnus his Prevacid. I haven't tasted it, but it smells awful, and I had to give him a large volume of it. Now I can just squirt it in the tube, with no tears or screaming! The other big advantage of the tube is that with continuous overnight feedings, last night, Magnus only woke up once during the night, at around 3 a.m. To say that this had never happened before is a huge understatement! Before, on a good night, Magnus would sleep 3 hours at a stretch. On a bad night, it could be as little as 45 minutes all night long. We also finally moved Magnus into his own bedroom, and out of ours. Because he woke up so frequently before, it made more sense for him to sleep in a co-sleeper attached to our bed, but our bedroom is tiny, and the co-sleeper made it a tight squeeze, and there was no way we could also fit his feeding pump etc. in there, too. I was worried that I would miss sleeping next to him, but to be honest, it's nice to have all that space back in our bedroom. I can finally open the drawers on my nightstand for the first time in months! Not to mention that the possibility of one day sleeping through the night, formerly a crazy fantasy, now seems like it might actually happen soon.


  1. Welcome home!

    Tentative yay on the trip, big YAY on the one night waking, and hoping that things continue to go well!

    Getting more sleep will be great for all three of you, I'm sure.

  2. Great news that you are out of the hospital and still get to go on your trip. ANNNDD.. that you are hopefully looking at less and less sleepless nights. :)

  3. I'm very happy that everything went well. Getting used to the feeding pump will happen very quickly. I can get my daughter's pump packed in no time.

    I hope that you will get to go on your trip. We usually take a trip every summer (sometimes to an island off the coast of Maine - Squirrel Island, also only accessible by boat) but for obvious reasons we weren't able to take one this year.

    Good luck with the tube and your trip!

  4. Awesome news that you are home and tenatively able to go on your trip. I really hope M's visit goes well and you get the green light. I was curious to see how it was going now that you have moved him into his own room. I still have C in her cosleeper but not sure how much longer as she is about to outgrow it as well as get out of it on her own. Not safe. Are you using liquid (compounded) Prevacid? If so may want to ask if you can switch to the solu-tab Prevacid. We have seen better results with the solu-tab. Will be sending lots of good thoughts your way so you can see your family soon.

  5. Wow, great news, all the way around! Glad to hear you are home, sleeping better & maybe packing for your trip:)

  6. Ashley, yes, we are using compounded Prevacid. I will ask about the solu-tabs at our next GI appt, but I suspect they will be resistant, because they have told me that the "maximum" dose of Prevacid is 2 mg/kg/day, and the smallest solu-tab is 15 mg. Of course, I have found that Prevacid works great for us, but I need to give him more like 3 mg/kg/day. I am dreading having to have this discussion with the docs, but it really is amazing how well that "too high" dose works for us.

  7. good news on top of good news! I really hope you get to come to the east coast! Too bad you're not coming up to Maine, me and Julianne could have met you guys for ice cream or something! Maybe next time!

    and extra yay for the good sleepin!


  8. Clare, we'll definitely make it to ME at some point (maybe next summer?) and would love to meet up for that ice cream!