Recovering

We're out of the hospital, but not out of the woods...

Morgan seems to be making the best progress.  Still lots of nose-blowing and a little coughing, but no fever, aches, or nausea.  She slept well last night, which is the best news any of us can have right now.
Ryan slept last night, too, which is great.  He was up all night with Athan night before last (at the ER, then at home), on top of being sick himself.  I'm slowly improving.  I was up with Athan quite a bit last night, so a nap will be necessary today for sure.  But I'm don't have a fever or nausea at all, my sinuses are clearer, and my cough seems more effective.

As is always the case, Athan has the worst of it.  His body just does not fight off infection effectively.  Our pediatrician met Ryan up at his office yesterday (yes on Christmas day), and gave Athan a pair of intramuscular injections because of the severity of his double-ear infection.  They just walked out the door to go back up there and get another shot.  Because of his low muscle tone, Athan doesn't cough effectively, so he's not clearing up much.  He asked me to help him blow his nose about every 6 minutes last night from midnight to 4a.  I suspect, with all that's going on, he has a fairly constant headache.  He can't sleep, which delays healing and makes him unable to cope well emotionally. 

Grammy Tammy is here to help!  Yay!  I've asked her to let us keep taking care of the kids so she doesn't get sick, too.  She's restored some order tot he chaos of our house!  She did dishes and cleaned out and organized my fridge.  She gathered, sorted, laundered, and folded laundry.  She jumped in and helped with Athan a bit when his 3-day-whine was more than Mom or Dad could take for a minute. 

Also, our many thanks to the outpouring of food and prayers and offers to help.  Thanks to Liz, Kathryn, and Melissa for bringing yummy food so we didn't have to cook or shop.  Thanks to our kind neighbor Doris for driving me to the ER when I didn't feel safe driving myself, and for taking Morgan back home so she didn't have to hang out at the hospital.  Thanks to Layne and Laurie for coming to get Morgan and spending the night with her in a hotel while Athan and I were in the ER, and Ryan was busy caring for us.  And many thanks for all the prayers and kind words offered via Facebook, comments here, and texts.  We are buoyed by your kindnesses, all.

Home

We all 3 made it home. Now to watch Athan closely through these last hours of the night.

Thanks again to all.

Waiting and resting

After more and directed fluids, they are waiting to see how athan's SI responds. If everything looks good in a while, they might discharge him.

Amberly is resting too. Probably discharge her pending a little more time. The cough is still rough.

Christmas Eve in the ER

Long story short: we brought Athan into the ER due to acute stomach pain (we knew it was serious because Athan was screaming, which doesn't happen (I remember one other time)).
After X-rays and a CT scan, they have decided the obstruction in small intestine is due to an ileus.

While we await the next step, the boy is sleeping soundly.

Part B of our evening: Amberly also had to be admitted due to flu symptoms and vomiting. She could not stop coughing nor keep anything down.
She's resting as well, but still very uncomfortable.

Thank you for your prayers on both counts. And thanks to the elmwood west crew for celebrating the nativity of Christ in our absence. And to Neighbors and L&L for taking care of Morgan this evening. There are more thank you's, but have to cut this post short.

Cardio

Just finished echo and EKG.
Athan really handled both well this time.
Now we're waiting to hear from dr hackman.

Real rest

Snoring on Mama's lap is good

Home again, home again...

Athan's home and relaxing in the bathtub. :)

He is out of the danger zone.  His sugars are really high now, thanks to lots of extra Cortef in his system.  He's safe, but he's going to feel rotten and weird until we step back down to normal dose.  Might be a long night ahead.  When he has all the extra steroids, he seems to be a little restless, jittery, and emotionally extra volatile. But he feels better, and these are signs he's on the mend, so I'll take it!

Many, many thanks, again, for all your prayers for our boy.

Moving Forward

Dr Wiley evaluated Athan once we got up to our room. Since athan is feeling better and has an appetite we'll try some basic food. If he can keep that down and his glucose levels remain stable, he'll send us home tonight.
Thanks for your prayers - this guy is a trooper.

Better

Sugars up and holding. Meds in. Stats good. Out of ER and in a room on pediatric floor. Waiting on visit from pediatrician while watching Toy Story 2.

Adrenal crisis again

Athan woke up not feeling well and with a scary low blood sugar. We couldn't get him to rebound at home, and had to bring him in to the ER. After a couple tries we finally got an IV run and glucose in his system. His sugars are up, and we are getting his adrenal support meds now. Thanks for praying us through another round.

Couldn't have gone better!

Cardio follow up today was really good. Maybe because it was his birthday, Athan was in a great mood. Instead of tears and fear about the Echo or EKG, he giggled about all the "stickers" and told the nurse "thanks for listening to my heart." Super charming all morning long.

The report: blood cultures were clean (=no more ibuprofen), no fluid around his heart (=no more LASIK), incision site looks great (=no more steri strips), and no leakage in the valve (=no more surgeries).

= hallelujah!!! :)

fever still

Athan's fever persists.  Blech.

Ryan took him up to Hendrick to draw blood this morning.

Now we just give lots of Motrin and wait. :)  

Thanks, all, for sticking with us in prayer.

Poor kiddo still has a slight fever, but he did eat lunch and then sleep all afternoon. 

ECHO and chest x-ray both looked pretty good.  There's some fluid around the heart (no one was alarmed - they said it was not an uncommon post-op inflammatory response).  We've started Motrin, stress dose of Cortef, and tomorrow we're going for a blood culture.

little snag

A fever.  Two days worth of a low-grade fever, plus a few hours of a pretty high one.  Boo.

We called the Cardio office at Cooks this morning, and they sent us in to see our local PCP.  Ryan is up there with him now.  I know they are doing an ECHO and an x-ray to make sure his heart stuff is ok.  Likely, it's a virus. 

I'll update when the boys get home.

Update from home

SO glad to be here!  So glad. :)

Athan is really doing well.  His anxiety level is 1000 times better here at home.  Even when his pain level was low, his stress was high at the hospital around the clock.  That's the best reason for getting out of there:  Lower anxiety means better healing, always. :)  Athan is so much more himself.

Things aren't quite "normal" of course, and won't be for weeks.  There's the incision site where they did the surgery, and a small one just below it from the drain tube.  Stitches and itches.  Athan will forget about it for a while, but when he remembers, he still cries and asks me to take him to see the doctor so they can take it all off.  His follow-up appointment is in two weeks (ON his birthday, actually), so until then - wound care.

Also, in addition to his normal meds, he is on Lasix to help him keep reducing the fluid buildup from surgery.  For one, it tastes horrible!  Also, it's tough to keep him well-hydrated and not constipated.  It also makes him have to pee all the time.  During the day, it's just annoying to him.  At night, it means waking up a couple times with a flooded pull-up, and wet PJs and sheets.  Boo.  Ryan and I are taking turns sleeping in his room, in case he wakes up and needs help.  Last night was my shift, and he was on his third set of PJs at 3 a.m.  Then he was so awake after the last change, he couldn't get back to sleep.  He said he was hungry, so we had cereal at about 4 this morning. :) 

I think I'll go in search of a better nighttime solution today.

 

His pain is...  well, I'm blown away by how little he has complained.  He had just two doses of regular Tylenol yesterday, and none so far today.  I've heard not a peep about pain today.  Less than a week from surgery, and he's almost off of pain meds altogether.  Whoa.

One of the bright spots about being home is NO MORE hospital food.  Yay! :)  In fact, our sweet friends here are bringing meals so we don't have to cook alot.  MANY thanks to Mac and Evelyn for yummy grilled chicken, and to Judd and Allison - Athan LOVED the spaghetti, and his Mama loved the fruit salad.  

Alright...  laundry.  Here I go... 

Home

Out!!

One last nap

While we wait on discharge stuff:

Official "yes" from Endo

We can go home!! :) His telemetry is off, IVs are out, paperwork is on the way. Yay!

I am floored by how quickly he has progressed. I was planning on 2 weeks up here. Sososo glad to be heading home just 4 days after surgery.

Still not sure

Cardio has given the green light to go home, but we are waiting on word from Endo (and docs can be hard to find on Saturdays). Until we know, just hanging out, hoping to get IVs out soon.

Chillin in the chair

While the sheets get changed

More himself...

Athan was much more himself this afternoon. We got a few smiles and even a giggle or two. He still gets anxious and whiny when the nurses come in for vitals and such, but who can blame him? We are all ready to get confirmation in the morning and go home! :) Kiddo is resting now, so I better do the same.

It's only kind of a rumor yet...

But we might get to go home tomorrow!

Movement

Though what Athan most wants right now is to sleep, we just went for a walk after lunch and found the play room. This will help his lungs clear out and help him continue to feel better.

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.