Tuesday, April 5, 2011

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!


  1. Wow, thanks for the update - had been worried, so had been praying extra hard that things are going well. Been there, done that with the needle sticks - my son had a sign above his bed for a while that said "Please do not stick my left foot". He still has scars after 25 years, but he made it through, and I am sure little Wolfie will come through with flying colors as well. Keep fighting the good fight, and get some fresh air daily, it does wonders to revive and refresh. NKL

  2. My, things have really been busy for you all. Glad to hear all the good news however. Saddened that Sam is feeling like a pin cushion lately. Take your Vitamin C and get some sleep so the cold doesn't become worse. Thinking of you all.

  3. Look at those gorgeous eyes!! Hope the swallow study is helpful & that the nerve starts to "reawaken" soon. And we're always hoping & praying for all signs of progress -- like seeing Sam's beautiful blue gaze. If part of the progress involves both of you getting some fresh air, sleep, and respite, that will really be good!

  4. I love the hat and scarf. I'm thinking of the three of you always! Brenda

  5. Oh, poor little pincushion :) But he looks absolutely wonderful, especially with that hat!
    Prayers for all of you!

  6. Praying that all is well!

  7. Sam looks great in Buckeyes colors!


  8. Hang in there Sam! You can do it! Mr. and Mrs. Leclaire, your son is so amazing. I'm sure you already know that though. I can't even begin to imagine how you both must be feeling, but you handle it well. I greatly admire and respect you both for the strength you have shown. I hope Sam will get through this. He's a strong little guy who isn't giving up easily, so I know he can do it! My family and I wish the three of you well and you are constantly in our thoughts. Keep on fightin' Sam!!

  9. Sam is absolutely adorable!! I'm thinking of him all the time. You all are so strong.

  10. Just thinking about the 3 of you. Hoping this Friday afternoon finds you happily cuddling by a sunny window & feeling peaceful. Love from all of us Drowns.

  11. Hello guys,thank you much for sharing
    I know our GOD is holding your babe as mine
    in his hands!!! Be strong and take heart, all you
    who hope hope in the LORD. Psalm 31:24


  12. Tammi T. (mom to an HLHS boy)April 8, 2011 at 10:57 PM

    Sorry, I'd missed about a week's worth of posts about Wolfie, though I've still been praying for him. So many memories came rushing back to me as I caught up on what has been happening in Wolfie's life there in CO. Our Daniel has a partially paralyzed left vocal fold and his cardiologist suggested that it was possibly due to his nerve being nicked during the Norwood, so please know you're not alone. Daniel did have to have a g-tube but it has now been removed. He eats and drinks fine now. (He does have an occasional cough or sputter if he drinks to fast but not on a regular basis, thankfully.)

    I can also relate with the medical terminology you acquire while hospitalized. While Daniel was hospitalized, I had several interns ask me if I was in the medical field. They seemed surprised to find out that I wasn't.

    Thanks for also letting me know about the Hospital Pyschosis. I recognize the symptoms but never knew it had a name! ;) It really explains so much!

    Sounds like you have a lot of support! That is so awesome and makes such a big difference. Oh, by the way, how is the other little HLHS baby there? The mother's name is Espalanza, I believe. I will pray for this little one when I pray for Wolfie. Keep us posted.

  13. kaiser...suckahs!!! they should be honored to insure sam!!!