Support

You all know grandparent is a thankless job. We're so glad for nana and papa and Grammy being around the last few days. They've been a great support to Athan, Morgan and to us.

Also, Morgan gets the A+ big sister award. She's been awesome and Athan was pretty sad when she took off today. He won't let go of the card she made him.

Unofficially..

The cardiologist will have to read the results of the ECHO and talk to us later. But our ECHO tech, Eric, says from his perspective, Athan's valve looks great! :) A tiny amount of leakage, but significantly less than it was before. Yay!

Getting a post op ECHO

While dad reads :)

Up :)

Watching Smurfs at 4.30. When he remembers where we are (usually because he coughs or bumps his IV hand), he reminds me again that he would like to "take all this doctor stuff off and go home."

Me too buddy bear... :)

3a

Vitals good. Sugar 118. Resting again.

Always improves his mood:

Bonus

One of the best things about being unplugged and tube-free, as far as Athan is concerned:

Out of ICU! :)

We moved upstairs to the telemetry floor in a regular room. It's quieter here, and both my boys are resting now.

Athan is more and more alert, and spends his time awake begging us to take us home. I'd love to find some way to help him take the next couple days better than that! He gets a burger when he wakes up, so that might help.

"normal"

So Athan just woke up. The first words out of his mouth were "Dad! Mom! You are back to normal now! You guys aren't huge any more!" (with big smiles). He's since told us many times that he's glad we're all back to normal size. Even Grammy.

Eating some pancakes now. Yay!

Ok whew!

Resting now after a bout of trippy ketamine weirdness.

Good news bad news

Good: chest drain tube, and 2 of 4 IVs are out.

Bad: they gave him ketamine before the removals, and his reaction hasn't been good. His body seems fine and his pain is ok, but he is really disoriented and afraid. He's asking where we are, etc. Should wear off soon...

IVs and braces and pulse-ox sensors be damned...

I can eat my jello myself!

Next steps

The monitors off his forehead and cath out are good news but that means a little pain right now.

Smile and a tear

A Winnie the pooh movie put a big smile on athans face, followed by a big set of tears and 'I want to go home'

He's pretty alert this morning and eating a little jello which seems to be settling well with him. The nurses just swapped out for the day shift and our new nurse is about to look the boy over.

6am Thursday

Athan has been asleep for the most part since 1am. He's opening his eyes now.
That good rest should help a lot with some of the transitions we anticipate today. More news after shift change -

Cleaned up, new bedding

As amber mentioned earlier, the 'help me, help me' cries are pretty rough. He had a few of those for me as the nurse changed his bandage, cleaned him up, and changed his bedding. Now he's back asleep off and on.

10pm Wednesday

Athan zonked out during the movie. The nurse gave him some Benadryl for some itchiness he was feeling and now he's sleeping pretty well.

Next time he wakes up they'll need to change the dressing over his incision, so we'll keep you posted.

Movie #1

As you can see, boy is alert now. He's been asking to eat and drink so we're easing into some jello.

Also, to distract from the discomfort, staci our nurse has queued up toy story 3.

Shift change Wednesday PM

Not a lot to report as the nurses swap out. Martin has been great today and Pat will be athans nurse again tonight.

Athan continues to rest and hasn't wiggled much lately.

Woke up once

When he is awake, he asks me to please take all the stuff off and take him home. I do ok until he just says "Mama, help me" over and over. It's a helpless feeling, watching my frightened kiddo hurt. But we sip clear liquids and sing songs and take deep breaths together until he can rest again.

His blood pressure is hovering a bit low right now, due to all the meds on board. But nothing too alarming. He is resting well again now.

3 more wires gone

We just got to pull the pacing wires out. 3 down, 57 or so to go (maybe fewer but Mom thinks it seems like that many).

They are trying to go up a bit on pain meds and down/off the sedative so he can wake up with controlled pain.

Resting still

Athan is still sleeping away, and everything is progressing as it should. Looks like his drainage tube might come out late tonight or early tomorrow.

Much better!!

We got back ahead of his pain, and he is resting now. Mama and Athan both took good naps while Nana Lena sat with us.

Little better

Morphine for pain and Adavan to sedate and he is calmer. Still grimacing and snubbing but more relaxed.

Tough time

Trying to his pain back under control, but kiddo is hurting and scared right now.

8.30 Wed

Just gave the standard post op dose if antibiotic. His sedative is reduced and he stirs awake more often now. He is thirsty and wants "all these doctor things off of me so we can go home." :)

But he can still rest well between the brief eye-openings, and vitals look steadily good.

615 wed morning

Good sleep continues, despite the interruption of a routine chest x-ray. Still watching blood volume levels - probably something the docs will discuss on rounds this a.m.

Sleep and labs

430am Wednesday: Athan has been sleeping well and Pat has drawn all of his 4am labs. Everything looks pretty good, with the exception of his blood volume. It's lower than they'd like so they're giving some albumin to try and raise that level.

Restless

I got a pair of open eyes a second ago and a "hey dad." This also means he's beginning to squirm and want rid of the various tubes and IV's he's discovering so we've got our work cut out for us keeping him still for a while. And his blood/gas levels came back appropriate.

In and out

1:15 Athan has been waking for a minute or two then going back to sleep. The first words I could understand were 'get this off my head' and I imagine he's not done with that sentiment.

One of the OR nurses who works with dr Tam came by to say how well Athan did and how much fun he was for them as a team while they began anesthesia.

1st waking signs

1230 Athan began to open his eyes and then fight the breathing tube. They quickly extubated him and we kept him calm during the process. He responded to us and coughed, etc on command.

His oxygen levels are great, and now he's back asleep. Hopefully he will rest and continue to take some good deep breaths for us.

Night 1

Settling in well here in icu. Pat, our nurse for the eve has been great. And tonight's icu doctor is happy with athans vitals and transition out of surgery.
They will extubate him when he begins to wake up - probably in the morning.
For now we're trying to keep his body temp up and keep blood pressure in the optimum range.

To icu

We just got a glimpse of Athan. His blood pressure is higher than they'd like following surgery, so they won't be waking him up just yet. They'll sedate him further and wait for the pressure to regulate.

Dr Tam's report

We just met with Dr. Tam. He was pleased with the valve repair and said Athan did very well. He put about 10 stitches in the valve.

We should get to see Athan for a moment as he's on his way to icu.
Thank you for all your prayers and notes and support. We are breathing with a bit more ease and preparing for the recovery process.

830 update

Dr Tam is closing the chest. More details to come.

Update from OR 2

Dr. Tam still working and Athan is doing well.

Bypass

They just put Athan on the bypass machine. Dr Tam says it's going well.

Update from the OR

The two hours of prep went well and Dr. Tam just started the actual surgery.

Interpretation

Explaining to Morgan whats going on with Athan right now, trying to describe anesthesia by 'deep sleep,' she asked "is it enchanted?"

Just wheeled in

3.10. Athan The Brave back for surgery. Keep the prayer cover coming.

Gowned up

Gowned up now, and 'giggle juice' underway.

Checked in at 1

Still think we will start about 3. No food or drink now, which isn't bothering Athan at all it seems. Played a little baseball on the Wii. Now playing with toys with Papa Sid.

Sugar Lump and Professor Owl

Details

With the new delay it looks like this:

Play in various fun places here at the hospital until 1. Clear liquids only (though Popsicles are almost food and he seems happy so far) until then.

Stop clears at 1 and check in back at pre op.

Surgery at least at 3p and maybe after. That means 2ish hours of prep, then 4 hour surgery, then 2ish of recovery before we see him again. That will be midnight or so.

Right now Athan the Brave is playing with Morgan in a football playroom (pics soon).

Delay till 3p

The surgeon is just beginning his first surgery so we won't be starting until 3 at least. Strictly clear liquid diet until then so pray for kiddo :)

Checking in

What Papas are for

Pre op over

Athan was a real champ. He charmed the nurses and docs from beginning to end of the appointment. With the exception of the blood draw, he was all smiles and giggles and "yes please" and "cool."

He's got the green light for surgery tomorrow. We thought it would be at 8 but he is the second surgery instead. We arrive at 9.30 and will start some time after 10.

Tonight we will have dinner with the grandparents, followed by a crazy-good scrub in the bath. Stress dose of meds and hopefully lots of good rest.

Pre-op

Checking into Cook's for pre-op. Athan digs his new backpack. Thanks Mrs. L

short delay this time

Sorry I'm slow on posting this!  Due to scheduling issues for the Cook's Cardio folks, Athan's surgery is now postponed until the first of next week.  We'll go in for pre-op on Monday May 7th, and surgery is now Tuesday May 8.  Only a few days delay this time, and hopefully the last one.

So it went down like this

We knew Athan had a bit of a cough. We were talking with the RN at the cardiology office, and she said without seeing you, we just can't say for sure. So we took Athan on to Cook's for pre-op, knowing we might not be having surgery.

Athan did a great job during the appointment. The only things that really upset him were the things I didn't prepare him for (because I didn't know they were coming). We were really SO proud of him, and next time we can even prepare better now that we know what's coming.

So the chief concern and reason for postponing the surgery was that Athan has some congestion in his lungs, and maybe some wheezing along with it. He doesn't seem to even feel bad (no behavior changes, no loss of appetite, etc), and he does not have a fever. However, during such a long surgery, he would have to be on a ventilator for a long time. Post-op, one of the important tasks of recovery is to be able to clear the lungs well. Going into surgery with any respiratory challenges could prolong recovery, and increase the risk of infection or other complication. The last thing anyone needs after open-heart surgery is increased risk!

So, we postponed. It is, obviously, the best plan for Athan. The logistics of rearranging our schedules and such are a pain, but well worth it to make sure Athan is as well as possible before the procedure.

For all who have brought gifts and notes and care packages for Athan, we thank you. I've set it all aside in a special place, and we'll pull them all out for him again in a few weeks. Our whole family remains very thankful for all the ways you've cared for us.

Reschedule

Well Athan has a cough and some wheezing. Nothing too severe, but reason enough to wait until he clears up to do surgery. So no surgery tomorrow. Looks like late April or early May. Thanks for praying and we'll need it again in a few weeks!!

"when are we done wif pwe-op?"

Waiting at pre op

Pre-op check in

Just arrived at Cook's. 1st step: chest x-ray.

Restful day today

Thanks Alayna for the awesome pillow! As you can see, he digs it.

Surgery Schedule

Athan's heart surgery will begin Thursday morning (4/12) @ 8am.

We will arrive in Ft. Worth Wednesday morning for pre-op, etc.

Pre-op haircut!

a happy moment

Ok, I know this could be a fluke, so I won't get too excited. Still, this made me smile:

The kids were watching a short video and having a snack while I cleaned the kitchen. Athan got up and brought his trash (granola bar wrapper) into the kitchen and threw it away. Without a word to me, he got a napkin and wiped his hands, and then got out a cup, filled it with water, took a drink, put the cup back on the counter, and returned to the movie.

It seems simple, I know. But just celebrate with me, for a moment, what he did NOT do. He did not leave his trash in the living room floor. He did not wipe his sticky hands on the recliner or on his shirt. He did not yell for me to bring him a napkin or a drink. He did not leave his cup half full of water in the middle of the floor, nor did he throw it in frustration.

Morgan craves independence so much we have to remind her that she's still 7, not 22. Athan, on the other hand, has been more resistant to our encouragement toward more independence. For a moment today, that was different.

A happy moment. :)

cardio surgery consult

So I'm trying again to keep up the blog. :)

We just had our consultation with Dr. Tam, the heart surgeon at Cooks Children's. He described the procedure to us (no surprises), and we set the dates.

Pro-op: Wed, April 11.

Surgery: Thurs, April 12.

eye surgery postponed

Athan's fine. But Cardio says we'd better do the surgery in a hospital so he can be on a heart monitor during the procedure, and our current doc is only set up to do surgeries at a surgery center that doesn't have heart monitoring capabilities. So he's referring us to a pediatric eye doc in Ft. Worth who does surgeries in a hospital.

I'm glad we're being cautious. No complaints about taking the safest route. I'm a little frustrated that it took so many appointments before we figured out that a referral was needed. Still, everyone was very helpful at both offices in town today, and got my surgical pre-payments refunded quickly and fully.

So we'll meet the new doc soon and start the process over.

pre-op for eye surgery

We went in for our pre-op appointment for Athan's up-coming eye surgery today. It should be a short, simple out-patient surgery next Wednesday, and they'll kinda loosen the muscles on the inside of both eyes to keep them from turning in.

Now the week of jumping through medi-communication loops begins. We actually already had an appointment with Cardio for this Thursday, during which we have to get them to send all of Athan's info (through the Cardio lens) to the docs at the surgery center for review. Same with Endo, plus stress dose instructions for his IV Steroids (because unlike the saintly Dr. Irene, we haven't gotten a letter yet from our new doc with instructions for surgeries and emergencies - bah!). Then the anesthesiologists convene over his compiled medical history and decide if we're ok to proceed as planned. If they decide Athan would be better served to do the surgery at the hospital instead of the surgery center, we'll have to reschedule.

Barring any red flags, one more surgery for kiddo a week from tomorrow.

some other stuff we do

Blue pants because it's too hot already (yes, we will get him a haircut soon):

Ryan lays sod in the backyard:
Morgan dresses up for 50s Day at school:
And Western Day:
And we hang out with Grammy and Baby Mae:

Vacation

Planes (Dallas to St. Louis to Chicago to D.C, then D.C to Denver to OKC to Dallas):
Trains (into Baltimore and back with the Crisps to visit the science Center):


And automobiles (lots of driving, too. Trip to train station pictured here):


It was really good to see our friends the Crisps! What a great way to vacation! The Wilmore Diaspora better watch out - the Strebecks like planning vacations to intrude on old friends. :) I think the kids had fun:

i know, i know

I haven't been writing. I'm sorry. Among other things, my brain has been swimming with the info in the video below. Meanwhile, the Good Ship Strebeck is sailing along nicely. Specifics soon. (Thanks to Cindy and JD for the link to this vid.)

All better now...

Athan recovered from the procedure 2 weeks ago just fine. He probably took the whole thing better than I did! :) I was sickly for a couple days after his ordeal was all over.

Then we went to Clovis for a belated Christmas gathering, and Morgan got sick (as in puking lots and eating almost nothing for a couple days). Then we came home from Clovis, and Athan got sick (also puking, had to give IM shot of cortef).

But we're all better now. Whew!

Pre op going well. More updates on facebook.

Well lthis is new...

Athan has his dental work done tomorrow. Just a few fillings, but it has to be done at the hospital to monitor heart and endo stuff.

This has been a new experience for us. In Kentucky, all of his procedures, whatever the specialty, were done either at UK or down the road at Central Baptist. Most of his docs knew each other, and all of his records were in the same computer system. Getting instructions for Athans care before, during, and after surgery seemed pretty easy.

Not this time. The dentist is a local independent practitioner, the pediatrician is part of a local practice, and the local Hospital is host for the day surgery. Meanwhile, Athan needs input from Cardio and Endo which are through Cook's Children's in Ft. Worth. Every doc and nurse and staff member is overbooked and overworked, it seems. We can't get calls (or faxes or e-mails or sing-o-grams) from specialists for pre- and post-op care, and we can't STOP getting calls from people who want the money first and NOW.

Ugh. I think most of the wrinkles have been ironed out, hurdles jumped over, and hoops jumped through. Tomorrow we will head up there at 7, have surgery at 8:30, and hope to be home by noon or 1.

Christmas Singing

Athan sings O Come, O Come Emmanuel from Ryan Strebeck on Vimeo.

EW Christmas Concert from Ryan Strebeck on Vimeo.

Athan wins again

Ok, parents. I need help. Again. The picture you see above is the result of "you may not get down until you've taken at least one bite." I lost. After I snapped this pic, I gathered him up and put him down for his nap. In case you can't hear it from there, he's already snoring. Surprisingly, this isn't so much about eating or not eating his food. He's a good eater when he's not already dug his heels in about it. It goes like this:

Here's the problem we face with Athan at least three times a day right now. It starts quite amicably: we give him a choice to make. Today it was "eat lunch" or "rest." Sometimes when he comes home from school, he's not hungry yet if they've just had snack. He gets sleepy before he gets hungry. Usually I just try to decide which is right for him, and act on my decision. Today I couldn't tell, so I gave him a choice. Per usual when given an either-or question, he announced his decision. "Rest."

So we head for the bedroom. No problem. He goes down for a nap most days sans protest. Normal. Except half way there, he changes his mind. "No I want to eat wunch first, Mama." Ok.

So we head back down the hall toward the table, where lunch is sitting ready for him to eat. "Actually, I want to rest first." Ok.

Back down the hall. "No lunch first." Ok. Back down the hall. "No rest first." Ok. Back down the hall... I calmly let him walk out his indecision for a few minutes until the tears come. He starts to shout at me each time he changes his mind "NO MOM I SAID REST FIRST!" even though I'm not arguing with him or impeding him in anyway from doing which ever he chooses.

Then I try to intervene, not because I'm in a hurry to get him to bed or to the table, but because it seems the only way to rescue him from the cycle of indecision he can't break alone. Of course, it's going to go badly from here because no matter what I do, it's the wrong choice. But now I've made a stand of some kind, and I can't let him just scream his way out of it. Thus "you have to take at least one bite before you get down" (the One Bite Rule is long-standing at our house, so that's not a surprise to him). So he cries into his pile of apples, ignores his quesadillas, refuses consolation, and falls asleep at the table (in this instance).

It happens almost any time we try to offer him a choice, and this is where I'm stuck. I don't know how to help him. I've tried letting him come to the end of indecision himself, and he just starts crying and gets angry. I try to intervene and decide for him, and he screams. I try to avoid giving him any choices at all, which might be why we're still in this pattern after so long, or it might be the right thing to do... AAAAHHH! I'm stuck.

Morgan never did this. It was enough to just say "you can't have both" or "you may decide or I will help and decide for you." She was ridiculously rational. Athan is not.

Any advice? Is he just too young to do what I'm asking him to do? How do I help him enjoy the freedom that comes with a choice instead of feeling trapped by them, to teach him how to choose? We're going on well over a year of this same pattern here, so any change would probably be a good one. :)

6

Morgan is 6 years old! During her "birthday weekend," she got to sing for the church twice, make a gingerbread house with Nana and Papa, and have a birthday party. We had a few friends over for cake after dinner on the actual day. There were guests from 6 months to 86(ish) years old, and Morgan, of course, seemed equally comfortable and happy with each extreme and everyone in between. We're thankful to the friends and fam who came (some on quite short notice) to celebrate Morgan with us. She's pretty excited about being 6!

I finally gave in. I've said for 5 years now that I wasn't going to spend alot of time on a crazy kid birthday cake for one too young to really care. But Morgan's six now, and she cares. :) So I called my mom-in-law for tips from a pro, and set out to make Morgan a Castle Cake for her birthday (pink, girly, princess-y castle, of course). I watched this video, then modified it a little. The pink sprinkles kinda help cover the fact that I really stink at icing a cake. :)



Might have been a little better if I'd done strawberry cake, but Morgan's only request was for chocolate. :) Here's a clip of her reaction to the cake, and the birthday song:

Bummer

I'd put it off for months, but I finally made the kids both an appointment to see a dentist.

Morgan's fine.

Athan has cavities. Several. Probably somewhat due to genetics. I also wonder if the "drool pool" that stays in his mouth because of his low tone has contributed. Whatever the reason, he has to have some fillings. It'll be done up at the hospital here in Abilene on January 7th. We'll have to arrange for all of his Endo stress dosing ahead of time.

Yucky.

dress up

Morgan The Star

Morgan was chosen as the Austin All-Star for Mrs. G's class for the 2nd six weeks. She gets to go to lunch tomorrow with all the All-Stars at Mr. Gatti's.

AND I got a note in her backpack today informing that Mrs. G's substitute earlier in the week said Morgan was "very helpful" to her.

Way to go Morgan! :)

potty training!

We've been steadily working with Athan to go on the potty. We're not there yet, but today we had a big milestone: Athan wore the same underwear and pants from morning to bath. No accidents! We still have to take him to the potty every once in a while just to make sure, but we didn't change clothes or use a single diaper or pull-up today. Woo-Hoo! He wears a pull-up from bath to bedtime (which is dry so far), and then a diaper at night.

Way to go Athan Bear!!

a happier snippit

Tonight the kids and I spent an hour just chillin in the back yard. Athan decided to be "Athan Bot," inspired by a Sesame Street skit. He spoke in only two pitches, with halting syllables, called me Mama Wobot, and ended every sentence with "beep, beep." Apparently, Athan Bot's primary function is to retrieve pecans one by one from Mama Wobot and take them to the yellow bucket.

Meanwhile, Morgan found a Magic Stick, which had many functions. It could distinguish between good and bad pecans, it could locate smallish Magic Twigs that were saved in a pile for later use - namely turning oneself into Tinker Bell, and it rediscovered various Lost Treasures which were collected in a bucket.

It was a good evening. :)

i missed it.

There was a Window into my daughter's soul this morning, and I missed it.

It was a frustrating morning. We woke up a little late, and many of you already know that trying to rush a groggy 5-year-old through a morning routine doesn't really work. She lingered too long over breakfast, complained about her clothes and shoes (bringing long pauses before each item was finally on her body), and then whined through most of the brush-n-fix-the-hair process.

As I twisted the rubber band around her ponytail, she tearfully reported this to me: "Mom, I'm just sad because my friend M_____ at school always fixes her hair prettier than mine."

I was frustrated and we were in a hurry, so I threw some empty words of pseudo-encouragement at her, ignored her tears entirely (assuming them to be just an extension of our grumpy morning), and hustled her down the hall to grab the jacket and backpack and run to the car....

Then later, when the house was quiet and I faced 7 long hours before I could see my Morgan again, I cried a little. Partly for my morning fumble (which will require me to apologize to my daughter later today). But mostly, the tears came for the fact that it has already started for Morgan. This silly thing that women do - petty competition with one another to be the prettiest one - has started at age 5. Sans intervention, it won't stop for a long time, if ever.

So I prayed. I confessed. I asked the Lord if there's a better path through this for Morgan than I can see, and if there is, would He please point us both toward it?

And now I'm asking you, our community, to help me, too. Help Morgan know what real beauty is, and how to pursue it. Demonstrate celebration of the beauty of others WITHOUT putting yourself down in the process. And pray with me for the Holy Spirit to tell her these truths in ways none of us can.

It takes a village, right? :)