Friday, April 29, 2011

Hello-ello-lo-o-o...


Hello all. Apologies all for the long delay. We’ve not been keeping radio silence for any particular reason; call it overwhelming-ness-itude (not sure what the noun form of that word is). It turns out that this parenting thing takes a crazy lot of energy, and things that are not truly essential tend to get done “later.” And frankly, from us silence is a good thing. It means no news. Dullnes. Which, if you’ve read earlier entries and a later part of this one, is a very good thing. At any rate, later has become now, and there are so many things to tell! I’ll explain…

It always amazes me how the smallest things just seem to take on a life of their own and grow and grow. Back in November, for my wife’s birthday, I bought her a baby blanket from Babies ‘r Us. We’d only recently been given the HLHS diagnosis, and it seemed important to give some sort of token that emphasized our commitment to Wolfie. A baby blanket seemed like a good idea. Simple. Meaningful. At the time, I had no idea how such a small decision as “which blanket should I buy?” would have such substantial echoes. It turns out that by selecting a blanket, I had inadvertently chosen an entire theme for the baby’s room! Who knew?! I just liked the colors. So sure enough, after the baby shower and after putting together our nursery last week (bye-bye video game room), I began to understand what choosing a baby theme meant. Everything…no, really—E-V-E-R-Y-T-H-I-N-G matched that first blanket I chose. Just a few cute animals in a boat. You know, a giraffe, an elephant, a lion, a monkey…yep, you guessed it: Noah’s Ark.

So did I mention echoes? Small things assuming more and more importance as time goes on? On the positive side of these echoes, we were discharged earlier this week! On Monday to be precise. Coincidentally, after exactly 40 days and 40 nights, Kristin, Wolfie, and I got to go home. We got to experience all the beautiful, horrible elements of parenthood: enjoying the beginnings of intentional smiles, watching the baby meet the kitties, loving beautiful eyes, getting zero sleep, fearing we would screw up Sam’s meds or his personality, wondering how we could get up and do it all again the next day. It was both painful and lovely.

On the negative, we are back in hospital as of this afternoon. For two whole days we were free! But today, during a “routine” follow-up appointment, the cardiologist came in after viewing Sam’s echo and said, “I’d like to show you a few pictures.” We didn’t bother to feign surprise when, after showing us the images, she said Sam needed to be re-admitted immediately.

Wolfman has…well, something-that-isn’t-supposed-to-be-there-and-wasn’t-there-in-the-last-echo-two-weeks-ago growing on the inside of his heart. To borrow an understated phrase from one of our physicians, “This is very dangerous.” This something has evidently gained the attention of just about every cardiologist or cardiac intensivist in the hospital. And believe me, the last thing you want if you have a child in the hospital is to have doctors who are not assigned to your case to suddenly become…interested. Doctors’ lives are crazy, and they have no time for extraneous workload. Ever watch House? It may be wildly unrealistic in some ways, but they got one thing right: interest means mystery. Interest means rare or dangerous or more likely both. As of now, these other docs are not interested because of what they think it is: either “vegetation” created by an infection (endocarditis?) or a blood clot that has attached itself next to the tricuspid valve in the right side, the working side, of Sam’s heart. They are interested because of the relative size of the growth. Evidently, it is quite large. Which means that, whether it is clot or infection, if part or all of it somehow comes loose, it could flow to various parts of the body and…well, that would be bad. Tomorrow (now today, as I finish writing this at 6:30 in the morning), they will perform at least an MRI and possibly a CAT scan to see if any clots have broken off and lodged in his brain. That means stroke. Hopefully, we will know more before long. We will wait and see.

Finally, you may wonder what this second part has to do with Noah’s ark. 1) The echo. In the same way the blanket and its significance grew on its own, so has this something. 2) Bill Cosby. A long time ago he did a fantastic sketch describing a conversation between Noah and the Lord. It’s worth listening to: CLICK HERE. One of the great lines from it occurs when a neighbor wants a hint from Noah about what the ark is for. Noah says, “You want a hint? How long can you tread water? Hahahahahahaha.” Later, Noah starts complaining about all the work he’s doing and how he’s sick and tired of it all and isn’t gonna do it anymore. In response, the Lord simply says, “Noah! How long can you tread water?” Classic. On the other hand, I wonder.

I won't say anything more on it now, but, frankly, we are worried. Still...as our little blanket reminds us, we are also committed. And that means, until it is time not to be, we will remain hopeful.

As always, thank you for hoping with us.

14 comments:

  1. Life starts early in this hospital, as I know it does in that hospital. And in this hospital, as in that hospital, prayer rarely stops unless I close my eyes for a few short hours.
    May your journey today be a lot more swimming to shore and a lot less treading water. May you find the sand.

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  2. my thoughts are with you all today as they find out what the mystery is with Wolfie... cross my fingers it was just a blip from the computer

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  3. I wish I could throw you all a life preserver to help ease the exhaustion you must feel. I will definitely keep hoping along with you.

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  4. Thinking about your family and as always, praying for Sam's health and quick healing. In Dori's words, just keep swimming, swimming, swimming! Here's to hoping you'll be through this storm and back home in no time!

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  5. I'm sorry! We'll hope that all the imaging is clean. And Jason, the video game room? I don't think so...Karen's room. =) Hope there's nothing of interest to post. Love you guys.

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  6. hoping, as always, for you guys. sending so much love your way. take care of yourselves the best you can so that you can be there for cutie pie Sam. let us know how we can help you take care of yourselves...xoxo julie, joe, max, and allie

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  8. Because of the ark, Noah didn’t need to tread, though I’m sure he suffered. May all of you be sheltered in an ark of love, in an ark of healing, in an ark of hope and good luck. (The hospital, also, is an ark.) After the horrible storm, remember what happened to Noah: “And it came to pass in the six hundredth and first year, in the first month, the first day of the month, the waters were dried up from off the earth: and Noah removed the covering of the ark, and looked, and, behold, the face of the ground was dry” (Genesis 7:13).

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  9. Not seeing a post, was definitely hoping all was well and you were just too busy. Continued to pray for Wolfie's well-being and your strength in handling it all. Now asking God to lead and direct all those interested doctors to the proper diagnosis and a quick fix so that the little man can head home again. Can't help but to believe that God has a plan for Samuel, just as he did for Noah. NKL

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  10. Tammi T. (mom of an HLHS boy)April 29, 2011 at 6:22 PM

    Praying God, along with the hospital staff, will provide you the shelter you need from the storm until there is once again dry ground. We will be praying and asking others to pray for Baby Samuel.

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  11. Tammi T. (mom of an HLHS boy)April 29, 2011 at 6:24 PM

    Oh, one more thing .... LOVE the picture of Samuel at the beginning of the post!

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  12. I am so glad that you guys are home now! Congrats and good luck;) Love the announcement Pic.

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  13. Remember in Noah's Ark that first Noah sent out a Raven and found the Earth was still flooded. Finally, there was a dove, proving the flood was over. Praying your "dove" comes soon and you are home and healthy soon.
    -Kendall (Oklahoma lady)

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  14. shit. b u t, they caught sam's problem early, it seems. my dad had endocarditis, which they did not initially diagnose :-( seems like sam's docs are on top of this though and HOPEFULLY, nothing has broken off and gotten into the blood stream. please know you're in my thoughts. i can imagine how devastating it must be to be back THERE after you thought you were free :-((( love u guys xoxo joanne

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