Monday, May 08, 2006

Life on the Edge

Minus a minor (but still exhausting) hiccup on Thursday night and then again last night, we’ve been home for six days. This is one of the longest stretches of time that we’ve been home since February. Having all of the responsibility for Thomas’s medical care has been daunting, but having him all to ourselves has been more than worth it.

Still, though, Thursday’s hassle is sort of indicative of how fragile things are on the home front these days. We were still learning how to hook up all the parts of Thomas’s new IV nutrition (TPN) machine, how to fill the TPN bag with additives, and how to give Thomas his medicine, so the TPN company had sent us a nurse to help us out.

It took about an hour of explanation and demonstration, but finally the bag, the medicines, and the machines were set to go. Except, Thomas wasn’t. We couldn’t get anything in or out of his port. There were a few possible reasons, but all of them meant time was wasting while my hungry, sleepy baby waited for us to figure out what to do.

The nurse tried to re-access him at home – that is, take off the needle in his port and try to put a new one in – but after a couple tries, we realized we weren’t going to be able to handle it at home. Scott packed Thomas up, drove him to Children’s, got the new needle put in, and brought him back home. We finally got Thomas, frantically sleepy, hooked up to his nutrition at around two in the morning.

I know that in our new definition of emergency, Thursday night, and last night (same scenario minus the nurse) just doesn’t qualify. His and my frustrated, exhausted tears notwithstanding, Thomas was never in real danger of anything except hunger. All is truly well that ends well these days, but it’s stuff like this – the inability to feed my baby without a professional and institutional intervention – that reminds us that we’re still living on the brink.

That said, we’ve spent the weekend on the sunny side of the cliff. We got to get out and enjoy the weather and each other, and we get some great pictures taken that I’ll be sharing soon. Thomas has spent the weekend perfecting the frog kick, his new sign for “I’m pleased.” As in, one of us is gone for a while and then returns to the room, and Thomas kicks his legs up like a little frogman one, two, seven, ten times. If you’re very popular, you get arm waves, too.

Kicks and arm waves to you all for your ongoing concern and support throughout this weird time, especially as we face a tough round of chemo on Wednesday.

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At 10:05 AM, Blogger sarah's_mom said...

SooOooo wonderful that Thomas has actually got to spend some time at home!! I know GGma (great grandma mathis) was thrilled to walk in and see him sitting up - on his own - playing with his toys. Yippee! Then, in addition to that crazy frog leg thing he does, there's that adorable lift of the left eyebrow and the slow grin that appears when he recognizes ya as you're walking in the door. I just Love that!
Having spent two evenings and one nite there recently, I have come to an even deeper respect for just how much WORK, concern, fretting, and sleeplessness that goes into caring for a cancer patient with a trachea. WOW!! Kudos to Sarah for being in the room within an INSTANT of my calling out for her when Thomas threw up at 5:30 in the morning. And honest Scott, I didn't see your - um - unders! lol I mean, i DID!~ i mean .. aauugh. Nevermind. Anyway,it's just amazing to see the way Mommy/Daddy handle their little darling with such confidence, calmness (is that a word?), and Oooooooh so much love. Thomas is such a good patient - he seems to know that this isn't something anyone has chosen for him so therefore, he seems to just go with the flow most of the time. Amazing!
Looking forward to the new pictures!
Love, Oma

At 10:19 AM, Anonymous Anonymous said...

I check this blog all the time and am so glad to hear that little Thomas is continuing to kick some tumor ass! LOL

My 3 yo was at Kosair Children's for the first two weeks of his life for a birth defect and I have a LOT of admiration and humbleness for the parents of children whose maladies last a bit longer than that. I learned so many things then, about children and about myself. Mostly, that kiddos don't know anything more than to fight whatever they're facing. It's born into them - a sense of purpose in that little bundle. They fight, even when their mommies and daddies are worried. They fight no matter what, like it's no big thing. To us, however, it is a huge thing. My hugs and prayers go out to you and your husband. I pray this makes your entire family stronger for knowing what it can withstand.

God's peace and safekeeping to you all.

Toledo, Ohio

At 1:58 PM, Blogger Lady of Shalott said...

I'll be praying and sending good thoughts your way tomorrow. May you experience God's peace in a way that you never thought possible.

Many blessings,
Debra Lambert

At 3:31 PM, Anonymous Richard Pernell said...

Hey Scott. Richard Pernell here. Talk about a blast from the past. I just wanted you and your wife to know that we are praying for both of you as well as Thomas. My sister also wants you to know that she is thinking of ya'll.


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