Wednesday, March 22, 2006

Thomas Updates

If you’ve tried to get in contact with us by phone in the last two days, you probably received a hurried, single-sentence or –syllable response. We’ve had all kinds of tests and meetings and we’ve learned a lot. Here’s what’s new with lil T:

First, we are out of ICU and are down on the floor with our own bathroom. As soon as we got here I had coffee and cookies next to Thomas's bed and talked on my cell phone all at the same time just because I could. If I sound in better spirits, it’s one of a couple things – either the night out! With Scott! last night, or the coffee.

Second, everyone is pleased with Thomas’s progress. His stoma* is healing nicely, his stitches are out of his little head, and his scar from the surgery looks great. He’s even trying to turn over and to sit up more when we hold him. …and he has let us know that he definitely wants to be held more now that he’s more alert and comfortable.

Monday was a big day. First, Thomas’s ENT* changed out his trach for the first official time. I am not sure what they thought might happen, but we got it changed with no excitement of any kind. Took about 5 seconds. Let’s hear it for no excitement of any kind.

The second big event Monday was the swallow test. Remember those health class pictures about The Digestive System that show people chewing and swallowing? That’s how the swallow test works – Scott fed Thomas different kinds of mixtures while an x-ray machine took pictures of his mouth and jaw. The barium in the mixtures showed up as a dark shadow as Thomas’s tongue moved the liquid back and then into, three times, his windpipe.

So that was disappointing. Not entirely without humor, as most of the mixture got squirted out of the trach and onto Scott, but we left in pretty poor spirits. Failing the swallow test means that Thomas will have to stay on a feeding tube for quite a while. We couldn’t help but think of what that means for Thomas and his development and the kind of care he’ll need. Fortunately, though, the speech therapist and our doctors think that with intense therapy, Thomas has a good shot of swallowing on his own before too long. So we’re hopeful.

Oh, and chemo starts on ...Monday, I think? I need to learn to write down anything that's said to me before 9 am.

We also got the word on coming home – theoretically, Wednesday or so of next week !! We actually could’ve come home sooner, but it looks like we need to get the house rewired before we can bring home his machines (humidified air and suction for the trach and a monitor) and we didn’t see how that could happen by this weekend.

That’s all the big news and all I’ve got time for. Thomas has his 9 am physics lesson – today, gravity: he drops his teething ring, I pick it up. He drops it, I pick it up. Hmm, maybe it’s psychology…

*Vocabulary of the week: stoma = hole ENT = Ear, Nose, and Throat doctor

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At 10:38 AM, Blogger Kellee said...

I'm so glad you all are remembering to take care of yourselves during all of this. It's so important. I hope you all enjoyed your night out last night. Don't forget that you DESERVE IT!

Congrats on the room move & on all of your victories. Every positive step (no matter how small it may seem) is a step in the right direction!

Hugs to all!

At 10:56 AM, Blogger delicious_dish said...

I'm anxious about chemo, but glad they are gettting started since it's what he needs.

At 1:47 PM, Anonymous Anonymous said...

I just don't know what to say here except that you are in my family's prayers and are on the prayer list at All Saints Church.
May God richly bless you all.

At 1:51 PM, Blogger sandylandy said...

I'm so glad things are going better!

At 2:30 PM, Anonymous Anonymous said...

Hi - I came here from Real Live Preacher's blog. Thank you for your story and you will be very much in my prayers. I want to tell you that there's lots of support out there for families with children with feeding tubes who are learning to swallow. My mom's friend is an OT who speciality is just this - her website is - she has workshops and info, but I know she also answers questions and has contacts of professionals all over the country who will help during this process. Her big teaching is that feeding children with tubes can and should still be a loving and bonding experience. May God's love hold you all in this time.

At 5:05 PM, Anonymous Anonymous said...

Yay for the steps forward!! I'm so glad to hear everything is healing up nicely, and the move to the new room is GREAT!! It'll be wonderful for you guys to have a little bit of family space.

I'm sorry the swallow test didn't go so well, but hopeful that the speech therapist is right and it'll be a very temporary situation.

You guys are in my thoughts & prayers!

At 6:17 PM, Anonymous Anonymous said...

I'm a long time reader of Real Live Preacher. My wife has also been dealing with a brain tumor since 1997-2 surgerys, 3 times on chemo, radiation. If I can ever be of help, please feel free to contact me @ Good luck.
Tucker Royall
Palestine, Texas

At 9:55 PM, Blogger Rhonda said...

yay for new room. Yay for thomas in general. Im so happy you both got some time to yourself.

At 7:56 AM, Blogger mimi said...

Sarah, I'm thinking of you, scott and thomas everyday. Know that you are in my prayers. I love reading the updates and am inspired by your insights.

At 8:57 AM, Blogger Da Youth Guy said...

Your blog brought back memories of when my daughter was born. In her case we were at Children's Hospital (Buffalo NY) because Rachel was 2.5 months early. She was tiny and looked like a pin cushion for a while with all her wires and tubes. My wife had some complications and was in her own hospital room for about a week. I remember driving the hour and a half each way as often as I could around my job. The reference to the Enterprise is priceless! And right on the money. Mostly I remember the worry.

Please remember that you'll still need that time for you and your husband after Thomas comes home. That's going to be harder to arrange in all liklihood but you need to do it.

So here's a thought to hang onto. Today my daughter is preparing to graduate from high school and go to a great private university as a scholarship student. She's healthy and strong and wonderful. Her parents survived as well.

My prayers ascend that you and Thomas will come to the same place we have.

PS - Real Live Preacher pointed me your way through his blog.

At 6:59 PM, Anonymous Anonymous said...

Thomas--you are so very tiny and small--yet so very strong! To quit or give uo has not occurred to you. You don't know how to give up. You just keep going day after day. Your life and circumstances are giving such strenth to others. I have your sweet picture in my cube at work. I have a grandson who is your age. I love him very much. I know how much your family loves and adores you! My dear sweet Thomas---you and your family are in my thoughts and prayers every day.

At 9:16 PM, Blogger sarah's_mom said...

thomas smiled at me today. and I smiled too cuz i got to hold him at long last. life is good.
this too shall day at a time.
i love you.

At 7:12 AM, Blogger Visual-Voice said...

found you through RLP blog. I'm holding all of you in the light during my meditation this week.

Be safe, be well.


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