Stuck...

Remember this?



Well, that's the problem. The Band-aid's stuck on Zach.

How is it possible that open heart surgery is a piece of cake compared to changing the bandages on Zach's chest tube incisions? Do you know how hard it is to hold down a screaming 4-year-old --- without hurting him, mind you (I mean we are only 2 weeks post-op) --- and peel off a little-bitty Band-aid? And can it possibly hurt that bad?!!

OK, now I feel a little better. Please share your experiences with this and what to do about it.

Is it possible?

Can Zach, a.k.a. Flint Lockwood, really be back to normal already? Only 11 days after open heart surgery? He is feeling great (not even taking Tylenol!), sleeping great, and eating great (despite the Fat Free Diet). The only time he feels any pain is if he has to cough or sneeze (just the thought of it makes me cringe). Incredible! I shouldn't be surprised, really. Not with all the prayers that have been lifted up to The Great Physician.

Zach and Daddy laying in the bounce house playing with his bouquet of balloons that our good friends sent him.

Zach had a great visit with the cardiologist this morning. Zach was funny this morning as we headed downstairs for his x-ray. Daddy pointed down the hall and told him we were going to Radiology. Zach said, "No Dad, we hafta go to X-RAY!" When the doctor came in, the first thing Zach said was "I'm on a diet!" Great report: nothing of concern on the chest x-ray, sats were great at 92-94, blood pressure just where it oughtta be. We go back in 2 weeks for another chest x-ray. So now that I don't have anything to worry about heart-wise, I am worried about all these x-rays. Aye-aye-aye --- the life of a heart mom!

I talked to the dietician from MUSC for a little more guidance with our diet. We are VERY limited, but I think I have a good menu planned. I just hope Mr. Picky can hold out for another 5.5 weeks!

So, we are looking forward to a very restful weekend at home. Hopefully next week we will feel like getting out a little at a time. After all, we gotta go see Toy Story 3!

Now, Dorothy, close your eyes and repeat after me...

There's no place like home.
There's no place like home.
There's no place like home.

There really is no place like home. We got in this evening after swinging by to pick up Rebecca. With all 4 of us under one roof, Zach likes to say, "We are a family!"

Now we can get down to some REAL recovery!

Thank you all for your prayers and encouraging comments --- they carried us through!

Please help carry another heart buddy through. Sam is having the Fontan (the same surgery Zach just had) at MUSC tomorrow morning (Thursday). Please lift him and his family up.

If you'll excuse me, I'm going to sleep in MY bed!

Tubeless and fancy free!

I can't believe it!!! NO MORE TUBES!!! They just removed the 2 remaining chest tubes and Zach is sitting up in bed eating his lunch! Hallelujah!!! We have to hang out until sometime tomorrow to make sure there is no fluid accumulating (they will do another chest xray and echo at some point). If all is well, we will be packing up to go home tomorrow! I keep reminding myself... Don't count your chickens until they are hatched.

In the meantime, here's a video I shot of Zach this morning. Just to prove how good he's been feeling.

A Day in Pictures...

After getting over his initial grumpiness, our day ended up being pretty good. We had some visitors --- so sweet of my good friend and fellow librarian, Susan and her son William to come and visit while they were down visiting family. We also spent some time with our new friends Debby and Melissa. We are so blessed!

Here are a few pictures from today.

 

In the bed but still in constant motion!

The Atrium is a wonderful place!! We were able to go 3 times today. Zach ought to sleep well tonight!

A beautiful view of the city from the Atrium

Playing a little Wii --- he's either concentrating REALLY hard or very tired. Maybe both!

Cheers!

Dad's idea of a turkey sandwich. I don't think you are supposed to put the WHOLE turkey on there, Dad!

Now for some REAL food (well, fat-free cafeteria food instead of plastic food)! I think Zach finally has his appetite back!

THE WALL

We have hit the wall. 7 days of people messing with Flint Lockwood and he's had enough. When I asked him about going to the playroom, he said "No, I want to go home." Blood Pressure? NO WAY! Temperature? NO! NO! NO! Medicine? FORGET IT! GO AWAY!

Thank you for your prayers. Please pray for cooperation from the boy. He needs to get up so we can get the drainage to go down some more. It has leveled off. He still has some fluid around his lungs, too so pray he can pee it off.

As Dorothy says, "There's no place like home... there's no place like home..."

Still hangin' out in 7C

Zach is doing so much better as you can see! Saturday morning he still wasn't feeling good at all (hence the prayer request for a "movement"). Praises! He had some success on the potty that alleviated his discomfort for the time being. We got to go to the playroom twice yesterday and took a walk in the hall last night. This morning he went to the playroom for about 45 minutes and did great. We are headed back to the playroom at 2pm. One of his favorite things to do is to doctor on the babies.

They said his chest x-ray still shows some fluid around one lung so they want to leave the chest tubes in until at least tomorrow. He will have another x-ray in the morning. It is just a waiting game.

Zach likes to "mess" with the doctors and nurses, so he says, "I not Zach. I Flint Lockwood." (from Cloudy with a Chance of Meatballs. If you haven't seen it, get it. It's a cute movie) So one of his nurses put his name on the door and printed out a picture of Flint. Funny Boy!!!

In the meantime, we refer often to our roadmap back home. Just before surgery, I checked out The Wizard of Oz and Zach fell in love with it. I ended up buying it and he has watched it about 100 times. When we were in ICU, they suggested making a chart to help Zach to cooperate a little bit more. I started drawing this roadmap that would help Zach see all that we need to do to get back home. You can sing it, "Follow the Yellow Brick Road!"

We have been so blessed by all the notes, emails, and calls. Thank you for your encouragement and support. God is so good and His Holy Spirit has truly been here to comfort and strengthen us. Please continue to pray for Zach to be able to eat (this fat-free diet is tricky) so he can regain some strength, for pain management, for the drainage to taper off, to stay free of any infection, and to be able to go potty again (not necessarily in that order!)

Pray for what???

I can't believe I'm posting this. Zach will be mortified one day when he knows.

Please pray for Zach to be able to go. You know... poop. He still hasn't been able to go since surgery. 5 days ago. Enough to make anyone miserable. Pain meds don't help the situation but they are necessary.

We had a great morning yesterday and then they took out his middle chest tube and pacing wires. He slept finally for a few minutes and then woke up in excruciating pain. It is so hard to see your child like that and not be able to do anything about it.

We are hoping for a better day --- for him to feel like getting up to play. That will be the best medicine of all.

Life is good

Life is good on 7C. Zach is in much better spirits, although he is still ornery at times. He just wouldn't be himself if he weren't. I think he is learning how to tell us about what he is feeling, and he is using words rather than tantrums to express it (thank God!).

He got to go to the playroom yesterday evening after we moved. That is some really good medicine!!! He was pretty uncomfortable, but getting up and moving around is all a part of getting better.

Zach in the wagon - tubes and wires in tow

Zach fixing me a cheeseburger

Lookout Picasso! You've got some competition! He was really worn out here and starting to hurt

Here's a funny that this picture reminded me of.  Yesterday when the doctor was examining him, Zach held up his foot and said, "I think you need to smell my foot!" What a funny boy!

They will be removing his middle chest tube in a few minutes I hope, so he will be much more comfortable. The middle tube is much stiffer than the other two and usually causes much more pain than the other two. They will give him some happy drugs for the procedure and he is ready for a nap, so I hope he will be able to get some rest.

The doctor told Zach that he had to go to the playroom and take his medicine, so hopefully he will heed doctor's orders. The doctor said there is no way to predict how long the drainage will take --- could be 3 days or 8 days. Quite a difference there. We'll take 3, thank you very much. Thank you for your prayers for a quick recovery.

Thanks for your prayers!

Just a quick note to let you know that Zach's disposition is much better (as of right now!) I could kiss a couple of nurses who advised us to step out for a while and get some lunch while they got him calmed down and playing. He seems like a different child! Thank you Lord for answering the prayers of our faithful friends!

 We are trying to wait patiently to be moved to a room.

Please keep the other families on the unit in your prayers. We met one family who has been in the PCICU for 4 months, since the birth of their daughter. They have relocated here to Charleston with their 3 year old son. Another baby just turned 2 weeks old and is having a hard time as he recovers from his first surgery. Please lift them up.

My sister-in-law has flown out to be with her family as her father, Dick Austin, is very sick in the hospital. Please pray for peace, comfort and healing.

Will update later if possible!

Keep praying!

So sorry that I haven't been able to update much. Zach demands (not really a strong enough word) a lot of attention, so when I get a break and can get to a computer I have to take care of necessities like eating and using the facilities (neither of which we can do while in PCICU).

I just realized that I never updated that they did not move us to a room yesterday. They said he had not gotten rid of enough of the fluid in his lungs yet. We are going to be moved sometime today. They are full on the floor but discharging one, so I figure it will be later this afternoon before they have our room ready. It will not be soon enough.

So far, surgery has been a piece of cake in comparison to dealing with a 4-year-old. He so desperately needs to feel some sense of being in control but there are very few things he can control right now. We are having some episodes that I think are what they call "ICU psychosis." We need a change of scenery and a remote control for the TV that works. What more control does a male need? So, please pray for him to behave and be easier to get along with.

He has developed chylous drainage, so we are starting on a fat-free diet. I'm not even going to think about how Zach will react at not being able to eat chicken nuggets. That would be another prayer request --- that he will be satisfied with what they will allow him to eat and that his chylous drainage would resolve quickly.

Gotta run and get back to help Bill as he deals with our Little Napoleon. Thanks for checking on us!

Baby steps

Last night after I made the post about the better mood, I returned to find Daddy struggling with a very, very grumpy Zach. He had all of his monitors beeping and beeping because he was so upset (heart rate up = blood pressure up = oxygen sats down = lots of beeping). Not pretty music to hear. The bad news is that Versed is not knocking him out --- its only making him a really mean drunk.

Here's a funny... one time yesterday, something started beeping and Zach slapped his hand across his forehead and said, "Oh, what now???"

At around 9:00pm we turned a corner and Zach conked out. We left to go back to "Mrs. D's Hotel" (as Zach calls it) to get some much needed sleep. We were a little apprehensive about leaving him, but apparently he slept all night. I think they finally got on top of the pain, making him much more comfortable. They also started giving him Benedryl for the itching which helped.

He woke up around 8:00am and actually smiled a couple of times! I can't tell you how much it blesses my heart to see that first post-op smile! That is good medicine for Mommy! He at a breakfast of Cheerios, bacon, fruit, and apple juice. Please pray for more smiles. I got a picture of him smiling but I have no way to download it yet. I hope to post some pictures soon.

In rounds, the doctor said that they will remove several of his tethers today and we will move to a room on the floor later. They said his lungs still look cloudy, but that will get better as he starts moving around more today and tt-ing and coughing more. So far his drainage output has been good and they will be taking out the one in the middle, which will make Zach more comfortable as this one is a very stiff tube.  His output will have to decrease a lot before they will remove the other two chest tubes.  Now that he is eating we will have to see if he will develop Chlyothorax or not, which is where the fats that he takes in cannot get drained away and collect in the chest cavity. Please pray that his body will be able to do its job on the drainage.

Thanks for all your prayers and encouragement! Mom and Dad are holding up pretty well but when they put us in a room, one of us will be staying with him at night. So, pray for good rest for us as we take turns doing duty.

Progress and maybe a better mood

Let me start out by saying that God has showered us with blessings --- as hard as this has been so far, I know that things could be way worse. Thank you for your prayers so far!

The only complication we are dealing with right now is the wet lungs. They are giving him a diuretic, so that will help him get rid of the fluid. He is on various pain meds (toridol, tylenol, morphine, and oxycodone I think) and he actually seemed more comfortable this afternoon as he slept. He ate a little bit, too. We are praying for a restful night!

We may be moved out to the floor tomorrow. He is slowly losing tubes and wires. He removed an IV this morning himself! Not too cool since they will have to replace it sometime soon. They also removed his foley, so I know that is more comfortable for him. He may freak out at tt-ing in his pull-up, though.

Thanks for checking in on us!

Don't you love technology?

So sorry for the gobbledy-goop that posted last night! Don't know what happened there...

So, the docs say that Zach is doing really well (kinda hard to tell it from the picture, huh?). He got off the vent really quick last night around supper time, I think. He didn't waste any time letting everyone know what was on his mind. Our nurse gave him a moistened mouth swab (little sponge on a stick) and he sucked the water out of it. That reminded him of something...

"I want a sucker... from the bank! Just go get me the van so I can drive to the bank!!! Now!!!"

He went on and on about that for a while. Then he said he wanted apple juice. Well, they like to go very slowly after surgery so we don't end up with a sick tummy. We moved to ice chips and then apple juice about 11:00pm or so. That appeased him enough that we were able to slip out and go back to the house for some rest. The nurse encouraged us to do so and I am really glad. We slept for about 6 good hours. Zach on the other hand slept about 2. His poor nurse! He is just so restless and uncooperative and in pain and itching (from the morphine) and "wants to go home now!!!"

Please pray for a few things:

• Zach has "wet lungs" which is normal but he needs to exercise his lungs and get rid of those fluids. It is causing him to run a fever which I'm sure is not helping him feel any better.
• pain management is a delicate dance. Pray they can find just the right combo of meds for Zach to be confortable.
• Pray that once he is comfortable he will be more cooperative.
• Pray that he can rest (everytime we mention sleep, nap, or rest he says "no, no, no, I don't want to sleep!)

There are not enough thanks for the prayers that are sustaining us now! Keep em coming!

Soooo sleepy!

We went in to see Zach for just a few minutes. The cardiologist said he looks great! He is starting to wake little by little. When he heard our voices he would turn his head but then drift back off to sleep. As he gets rid of the anesthesia and wakes up a little more they will get him off of the vent (remove the breathing tube), probably later tonight sometime.

We are getting ready to go back in and we can stay the rest of the day. Bill may stay with him tonight since we are not sure how he'll be as he wakes up during the night. He will want to know that Mommy or Daddy are there for sure.

Keep those prayer coming!

We are officially post-op!

We just met with Dr. Bradley and everything went smoothly. We are going to get some lunch and then will get to see him in about an hour. I am crying tears of joy! Praise the Lord!

Update # 4 12:10pm

They are about to take Zach to PCICU. Dr Bradley will be here to let us know all the details in a few minutes. I'll post again when I can. Keep praying as they get Zach settled in PCICU --- as they get everything stablized, begin pain management, and getting him off the breathing machine later tonight.

Update #3 11:18am

Just got a third update --- Zach is already off of the heart lung machine! Praise the Lord!!! They said they hope to be over to the PCICU (Ped. Cardiac Intensive Care Unit) within the hour. I guess Dr. Bradley will be out to talk to us then.
Thank you for your fervent prayers! We feel them surrounding us and strengthening us!
Heart hugs,
Pam and Bill

Update 2 10:07 All is well. on heart and lung bypass now thanks for your prayers
**Pam**

Update 1 905 All is going well so far should have a second update soon
**Pam**

Look out MUSC, here we come!

Someone really should call ahead and warn the docs and nurses at MUSC that Zach is about to crash their party. The wildman is about to enter the building! The BIGGEST flirt in the world is about to work his magic! They might never be the same...

We have made the most of our weekend at home. We spent some time trying to prepare Zach for what he's getting ready to experience. Anyone that knows Zach knows that sitting in one place to play with anything for more than 2 seconds does not happen, so getting him to listen and doctor on the doll they sent home with us is like trying to hit a moving target.

I apologize for the lovely picture quality here --- this was taken with a cell phone

Zach has decided, "I don't want to go to Chwalstron. I just stay here." Well that's the end of that discussion. Who can blame him, wanting to stay here when he has had so much fun? Look at what he has been doing...

This is an inflatable bouncy thing (yes, in our living room!) that we have had up to entertain Zach for the past week. He discovered, while I was occupied in another part of the house, that he could flip it over, propped on our ottoman, climb up on the ottoman, and slide down! Pretty ingenious, I have to admit! We've been calling him MacGyver! We just hope we don't have to go to the hospital for something different, like a broken bone or something!

We have to pack up, have some lunch and head down the road after lunch. MUSC, here we come!

This is the beautiful Ravenel Bridge between Charleston and Mount Pleasant

Pre-op

We are home again after a long day at the hospital. We had a hard time deciding about whether to come back home or not, but we figured it would be much easier to entertain Zach at home for the weekend. One thing is for sure, we WILL be purchasing a car DVD player for the trip back!!!

Pre-op went very well and all is clear for surgery on Monday. Praise the Lord! Zach was such a brave boy during his vitals, EKG, echo, chest x-rays, and blood work (the worst of all). He flirted with all the nurses, as usual!

We have to be at the hospital at 5:30am (Ouch!!!) on Monday morning. They will take him back at around 7:30am (after a good dose of versed!) and they expect the surgery to take about 6 hours. He will be in PCICU for 2-3 days then on the floor for several days (a week to 10 days). He loved going to the playroom today, so hopefully he will be ready to get up and around so he can go play.

It is such a blessing to feel the prayers that all our friends and family are lifting up on our behalf. We have also been blessed with a wonderful place to stay while Zach is in the hospital. Our host family is so sweet and their bonus room is a haven.

Thank you for your continued prayers!

Making a list and checking it twice...

I'm making a to-do list and a packing list and a shopping list. We are getting ready to head to the "Low Country". MUSC. The Medical University of South Carolina. That place that causes a jumble of emotions --- hope, fear, determination, dread, relief, exasperation, compassion, fatigue, gratitude. Right now, the list-making is a way to occupy my mind with some purpose. Otherwise, my mind will carry me away to places that I don't want to be --- places where I fret and worry about that which I cannot control.

Zach asked me this morning, "What'cha doin'?"
"Making a list" I said.
"For what?" he asked.
"Of things to pack for our trip to Charleston" I said.
He thought for a moment. "Where I gonna stay?"
"You're going with Mommy and Daddy" I said.
"Why we going?" he asked.
"So we can go visit Dr. Bradley and some of his friends" I tried to say with some excitement in my voice.
"I don't want to get a shot" Zach said.

Fortunately, he dropped the conversation then and went back to munching on his breakfast.

My heart was so heavy as I thought about picking up the conversation with him later in the week. We must prepare him for what he is about to experience. We must help him to understand that he needs to go through this to make him better. There is no way he can understand it. He must learn to trust Mommy and Daddy to take care of him and do what's best for him. In the same way, my burdened heart must learn to trust the Lord to take care of us and do what's best for us.

It is all about faith.

Psalm 143:1
O LORD, hear my prayer, listen to my cry for mercy; in your faithfulness and righteousness come to my relief.


Psalm 9:10
Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you.
 
Psalm 28:7
The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.


Psalm 147:3
He heals the brokenhearted and binds up their wounds.

Matthew 6:34
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

1 Peter 5:7
Cast all your anxiety on him because he cares for you.

Dr. Zach

HAPPY FOURTH OF JULY!!

Tonight, at bedtime I told Zach the story of Independence Day. I know he's only 4, but he's sharp. While our neighbors were noisily shooting fireworks, firecrackers, and Roman Candles, making it sound like the Revolutionary War was going on outside his window, I told him that the Americans fought ........ he said "Why they fight?" He knows that fighting is not right and I didnt try to explain it at bedtime! Regardless, I am so thankful for the freedom that we enjoy in the USA. I want to teach our children to appreciate the sacrifices that people have made for hundereds of years so that we can be free.

Rebecca and I enjoyed a girls weekend of shopping at Concord Mills in North Carolina. We brought Zach a really cool Toy Story 3 pop-up tent. He LOVES it! The problem is he wants the whole family to be in it with him all the time! Sissy decided to take a much needed nap in there and woke up an hour later trapped. Zach had piled pillows in front of all the entrances leaving Sissy to sweat her way through the nap!

We also found the most adorable PJ's at Carter's for Zach. We thought that they would be cute for him to wear in the hospital.

So during supper tonight, he proclaims that he is going to grow up to be a doctor and help people "feel better and give them Lightning McQueen stickers!" He practiced by "doctoring" on the whole family. Wouldn't it be awesome if God decided to use him in that way? Can you imagine the compassion that a "Heart Kiddo" would have for others? That's the kind of doctor I would want to go to!

Checking Daddy's ears

Checking Sissy's eyes

Mommy's heart says "Bounce, Bounce, Bounce!!!"