Friday, April 8, 2011

Silent Aspirations

Today's sign that we've been in the hospital too long: during this morning's rounds, a physician's assistant said to Kristin, "Wow, you really must have been here a long time to be able to ask those kinds of questions." My wife--the self-proclaimed doctor who is 6-for-6 in successfully diagnosing her friends' suspicious illnesses--actually blushed.

A friend of mine told me today that every time we skip posting for a day that her heart skips a beat. Generally missing a post means that either we were so exhausted we passed out early or we were up all night with the little guy. Apologies for making you worry. The last two nights, each portion of the prior statement rang respectively true. Wednesday night was blessedly silent. Kristin and I each passed out around 9:00 and slept through the night. It was awesome.

Of course, Thursday night if we split 5 hours combined, I'd be surprised. Remember the aspiration concern from the last post? Well, Thursday morning around 10:00 a.m. Samuel clearly got milk in his lungs while breast feeding. He started sputtering, his "sats" dropped to less than 40%, and his heart rate dipped to half its normal pace. We had to crank up his oxygen flow (doubling it!) to bring him back. For the rest of the day, he had a terrible, ashen hue. If split-pea soup were blue, that color would best describe his complexion. We spent the rest of the afternoon and evening watching and "chasing" his sats, which had become highly unstable, wavering between 50 and 98 (we want him to stay in the 75-85 range). By evening we thought he'd recovered. So when Anne and Jeff brought over fresh food (mmm...mandarin orange chicken salad and fresh fruit) for dinner, we happily ate and Sporcled the evening away. Here's Jeff with the the little bean. Look for the taller of the two in the Boston Marathon in a week or so. Good luck, Jeff!


But there was more excitement yet to come! You know those volunteer groups that bring animals into the hospital for the delight of their patients? Well, one volunteer showed up with a horse. Seriously! Look at that monster! If it weren't for her glitzy outfit, I'd swear that Great Dane was just sniffing us to find out who was the juiciest... The only reason we (really I mean "I": I'm perhaps a bit phobic regarding dogs, especially this sort of huge, man-eating type) let the behemoth in the room in the first place is that she shares the name Peyton with one of our kitties and our friend's, Cara's, daughter. That and she had her own business card. No joke. Check it out. Anyway, fortunately no one was mauled and we all went our separate ways in peace.


Now back to the other animal in the room: Wolfie. Just as Anne and Jeff were starting to leave, Samuel had another serious drop. Once we stabilized him again and shortly thereafter changed his diaper, the nurse noticed something red in his stool. Sure enough: blood. This time the doctors got involved. They suspended all feeding, ordered a CBC, a CRP, and a battery of other "ER"-sounding tests to determine if he had NEC or some sort of internal bleeding. Naturally, at just this moment, Sam's I.V. line blew, making it much more difficult to get the blood necessary for the tests (don't forget: it took 7 tries to get a viable vein for the I.V. the first time around). An hour later, they brought in a ringer who not only noticed a tiny scratch on Samuel's tushie (explaining the blood) but who also managed to get the requisite blood for the tests (which ended up being negative). Throughout the rest of the evening, Sam "de-satted" repeatedly, causing Kristin and me to gray prematurely. The only thing that seemed to help was to hold him upright and constantly burp him. Kristin and I took turns until somewhere between 4 and 6 a.m. when he finally stabilized indefinitely.


Fortunately, today Samuel had his "swallow study." Check out THIS VIDEO (crank down the volume first) showing what this kind of study looks like; it's pretty amazing, really. They bottle-fed Sam using a variety of thickened milk and bottle-nipple combos. Each time he swallowed, you could see where the fluid went and how. Sure enough: perhaps because of the paresis (not paralysis!) in his vocal cord, Sam aspirates just about every time he swallows. And what's more, Sam currently lacks either the awareness, the strength, or (sadly) the vocabulary to object like you or I would. We would cough, turn red, and complain about something "going down the wrong tube." Sam suffers in silence. These silent aspirations may be responsible for why he can't feed well. They also may be the root cause of his sporadic and uncontrolled saturation drops. When too much fluid builds up in his lungs, they just can't work properly, throwing off the whole synergy of the cardio-pulmonary system.

While this, frankly, sucks, at least we now have a sense of the root cause of his complications. Also, this may be treatable without resorting to more invasive measures such as inserting a G-tube. Silver lining? Check. Armed with this new knowledge, Kristin and I will remain not-so-quietly hopeful that the little guy will start to improve more quickly and that we will get to visit our little Peyton (and Roxie) soon. Good night, everybody.

17 comments:

  1. sounds like a tough day :-(( hang in there, you guys-- you're amazing. what happened sounds very scary, but judging by all your posts, sam WILL get over this feeding hurdle. and if it makes you feel better (or even giggle), i also inhale my food, but that's voluntary. sam is not alone ;-) xoxo

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  2. ps: that dog is odd looking.

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  3. Praying for continued "ringers" to get the job done and get Wolfie on the rebound and well on his way to improvement and HOME! Also, praying for your health and well-being, emotionally and physically. God Bless You. NKL

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  4. Even though we've never met, I continue to pray for you and Sam on this journey. My son also aspirates, and the best decision we ever made was to insert a G-tube. His quality of life, and our nerves, greatly improved after that procedure. (My husband and I spent many a night holding our son in the upright position as well.)

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  5. I can't believe you guys let that dog into the room...especially that one! That dog makes Guinness and Maggie look like gerbils or hamsters...or something else tiny. KK I can't wait to see you tomorrow!!!

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  6. My heart, too skips a beat when I see no update for days :) Glad to hear there's now a treatable diagnosis and that you are one step closer to home.
    P.S. Therapist tip of the day- research shows that if you do not do the care things require, you do not bond to them. For instance people are no longer into their fraternities for the most part that older generations were. This can be contributed in part to the fact that much of the extreme hazing has been stopped therefore reducing attachment.
    Consider this phase one of baby hazing :)
    -Kendall

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  7. LOVE the dog story!!! We continue to be amazed at your strength, Sam's strength and the love that surrounds you! We continue to pray....
    love
    becky and molly

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  8. Sam's so cute! He looks so comfortable resting on you guys. Peyton's business card is awesome. I wonder if our pets would be jealous. Hang in there. Miss and love you. Jeff, good luck in the Boston marathon! Hope the weather's good.

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  9. Thinking about you guys...hope you have good OT or speech support to help guide his feeding challenges. I work with lots of kids who had significant feeding difficulties when little and are doing great now! love you guys, julie

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  10. J/Kristin/Sam--Keep hanging tough, Marge and I love you and are sorry we don't live closer to visit more often. Will be back when you tell us it is a good time. Glad to hear there may be a root cause for Sam's current symptoms. I know you are exhausted fighting your well-founded concerns. don't forget to try and pace yourselves since collapsing does not help the world's finest and cutest grandchild. Love, Dad

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  11. For where your treasure is, there your heart will be also. luke 12:34. or in this case, Sam's.

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  12. Thanks for the update. I shared the pics and story with our Payton. She, of course, loved seeing the pics of Great Dane Peyton. She also offered to bring Penny, our not-so-large white bunny down to the hospital to cheer Sam up :)

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  13. I have all the hope in the world that things will work out. Stay strong and tell little wolfie to keep fighting. I'm not a particularly religious person but wolfie is in my prayers. Hang in there!

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  14. My son William has a variant of HLHS and after his Norwood he also had vocal cord paresis. In his case we were able to give him thickened feeds until it resolved. We did have to continue with the NG tube for a portion of his feeds for the first little while but eventually he took all of his thickened feeds by bottle. If you want more info from a fellow heart mom who's walked this particular road feel free to ask. In the greater scheme of things (although very frustrating) these are the types of complications you want to have - feeding related and not heart function related - if you have to have complications at all :)

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  15. I'd have to agree that we do worry when we don't hear anything but may relax more knowing that you all are just doing your thing. Hoping Sam starts feeling better soon.

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  16. Hoping everything is going well. Praying the "silence" is a good thing. God Bless You All!

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  17. Sending thoughts your way. Hope things are calm this evening. Love & hugs from our house to yours.

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