Don't Poke Me!

Sorry we've been away for a couple of days...chalk it up to being exhausted; I'm afraid the CPCU is not as calm as we thought it might be. In fact, our friend Anne stopped by to go running with me today, and she was amazed that five different people stopped by for five different purposes within a twenty-minute span: respiratory (to check Sam's lungs), lactation (obvious), OT (swallowing), nurses (vitals, meds, and food), and of course our case worker (fighting the good fight against insurance companies). And today was a calm day!

On a brighter note, Kristin did manage to pick up mail and packages from home this weekend. Thanks Susan and Stephanie for the awesome blanket and hat. Sooo cute. Go Buckeyes! And at this point, you know I love a good hat. Look at the little poof on top. :)

Here's Kristin with the little snuggler between pokes. In the last two days, the doctors decided to pull Sam's PICC line. Remember we said he was struggling with feeding? Well some of that may be due to a combination of meds including diuretics to limit fluid buildup. However, to keep the PICC lines open, they had to constantly flush them, adding quite a bit of fluid to Sam's body during the course of a day. So, to help limit the use of diuretics, they needed to pull the PICC, which was also an infection risk. In order to do this, however, Sam had to have an I.V. inserted. All told, it took four nurses seven combined tries over two days to finally get one (Suzette, you are awesome!). Sam barfed after 4 of the 7 attempts--awesome, now he's actually losing weight--and he now has needle holes in his right and left hands, both sides of his neck, his foot, his elbow, and even his scalp. Poor little guy. He's needed a lot of snuggling (and Tylenol) to calm him down over the last 24 hours.

You might also notice that Kristin is wearing a facemask. It may be allergies or simply feeling run down, but we both wore masks for a couple days because we were starting to have cold symptoms. As one nurse told us: "Nothing good ever happens in a hospital. Get out before you get sick." The irony did not go unnoticed.

By the way, anyone notice that Sam and I wear the same hair style? Sans beard, of course, but give him a couple months...

In other news, on one of the days when Sam was doing his best imitation of a pincushion (did I mention he got poked for an RSV vaccination? Puked after that one, too), he also got a visit from the ENT (ear, nose, throat) specialists. They didn't poke him. They put a camera tube up his nose and into his trachea to look at his vocal cords. I have to admit, I thought it was kind of cool. Especially watching the recording in slow motion. The good (and bad) news is: the ENT team thinks they've found the underlying reason for Sam's emesis. During the Norwood surgery, a certain nerve related to control of the vocal cords winds around in the general area of the heart. This nerve is very sensitive and is often bruised, stretched, or nicked during the heart repair. This evidently happened to Sam as we could quite literally see that one cord was not moving as it should. In the vast majority of cases, the nerve heals itself over time leaving no side effects, but in the meantime (especially in conjunction with the NG tube), the patient may be especially susceptible to acid reflux and therefore aspiration. It is possible, if not likely, that such temporary nerve damage has been a factor in Sam's feeding issues. Soon, the ENT team will further evaluate using a "swallow study." Hopefully, the results will help us to understand how to help him learn to feed more effectively.

In the meantime, there is some good news:
1) We won our appeal against Kaiser; they have agreed to pay for the pulse oximeter that we need. Victoire! Victoire!
2) Sam got a new luxury bed. Check out the size of that monster! (the bed, not the baby)
3) Which reminds me: it's sleepy time. That's good, too. Night all!