Living Proof...

Here's living proof that the Fontan Completion does indeed give the CHD survivor MORE energy...

Hurricane Zach wreaking havoc on the Owens household

...which just may lead to this...

Zach knocked out on the floor of the hallway outside his bedroom

One thing's for sure, being at work all day sure does make it difficult to get important things done, like grocery shopping, going to doctor's appointments, and blogging! It's a good thing that Bill and I work so well together as a team to get everything taken care of... except the blogging. Sorry it's been so long since our last update!

Zach continues to do well in preschool. He was so excited the other day because he got to be the teacher's helper for the day. He got to help carry her clipboard and hand out pencil boxes. He has been learning a lot about the letters A, B, H, Z, W and has been singing lots of new songs that they have learned. This week on Tuesday he goes back to cardio for a checkup and on Wednesday, he will go to the apple farm with his class! We are so thankful to God that he is doing well!

Rebecca only has a couple of weeks left in her volleyball season --- she will get to start in Monday's match. She has fallen in love with the game and I hope to get some good pictures of her in action.

I am loving my job! I still have a lot of work to do to get my library organized, though. I am trying not to get frustrated and impatient. I know it will take a while, and all the hard work will be so worth it!

Every Heart Has a Story...

Today my good friend and fellow heart mom, Stef, shown below, is hosting a linking blogging thingy. Not sure what to call it, but it is a great way for heart families to connect and share their heart journeys. It is also a great way to spread awareness of the #1 birth defect in our country - Congenital Heart Defects.

Every heart is different but one thing's for sure... Every heart has a story! For us, we were "adopted" into this world of CHD's.

Just to catch you up, we began the process of adopting Zach about 2 months before he was born. We took his birth mother, Nora, to several doctors appointments, but never knew that there was a problem with his heart. Rewind to April 29, 2006...

Our family a few hours after Zach's birth --- before we knew there was a problem...

Click here to visit and read the rest of this earlier post telling Zach's heart story...


Now, in August of 2010, I am proud to announce that we are post-Fontan and Zach is doing great! He is an amazing boy who is full of life and smiles for everyone he meets. He has started preschool and is learning new things every day. We are blessed.

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!

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.

Bumped

We got home from our pre-op checkup with our cardiologist this morning to find a message on our machine from MUSC. I thought, "Maybe they just want to confirm everything...". No such luck.

We have been bumped.

They are having to clear the whole schedule next week so they can take care of some emergency cases. My heart goes out to those families. I hadn't ever thought about the fact that we were once one of those emergency cases (when Zach was 3 weeks old and registered a 65 on the pulse oximeter - yikes!) and may have caused some other family the heartache of having to rearrange their schedule. The woman I spoke to indicated that we might not be rescheduled until the end of the month.

I have been so bummed out all day. I know I shouldn't feel this way. I know that God is in control. We have so much to be thankful for... but most do not know how hard it is to prepare for your child's heart surgery. You get yourself all psyched up and ready to get it over with and behind you. You prepare yourself mentally (thinking about what to expect), physically (making arrangements for siblings, planning what to pack), and spiritually (sending out prayer requests). You stay cooped up, avoiding germs. You...

Ooooohhh! Hold on... Phone call from MUSC!

Hallelujah! Our new date is Monday, July 12. I can handle that. We will have to be there for pre-op on Friday, July 9, which is a bit inconvenient since we will be 4 hours from home, but I'm not complaining. Oh, thank you Lord!!!

Thank you for your prayers for Zach as we prepare! Continue to pray for all of us to stay healthy and for Dr. Bradley and his team.

Zach and Daddy wrestling/snuggling on Father's Day

The Call

As I was reading a tear-jerker of a devotion this morning, the phone rang. I looked at the caller ID and recognized the area code. It was MUSC calling. I knew this call would be coming this week or next. I was expecting it. Maybe it was my already-raw-emotions, but I teared up even before I answered the call. I managed to hold it together through the conversation. Then I called Bill with the news...

We decided to take the first date they offered so hopefully he will be ready to start 4K in the fall.

The surgery will be July 7.

We go for pre-op the morning of the 6th, so that means travel on the 5th. Dr. B. that did his heart cath said to clear our calendars for a month, since everything depends on how his chest tubes drain (he will have 3!). After the Glenn, he developed chylous drainage, due to the thoracic duct being damaged, so he will likely have that again. She said we could expect anywhere from 2 - 4 weeks in the hospital. Can't seem to wrap my brain around a month right now, so we'll be optomistic and think 2 weeks...

Please be praying for all of us as we head down this road...

Heart hugs!
Pam

There's no place like home! There's no place like home!

Finally! We are home from MUSC. Praise God, Zach's cath went well. The doctor said he is ready for the Fontan sometime in the next few months, whenever we want to schedule it. She is putting in the request and we will be getting a call to set everything up. We have to look at our schedules and check with our friends who graciously loan us the use of their condo, which is about 10 minutes away from the hospital.

The cath took at little longer than expected because they had to take care of a long corollary artery. It stretches from his shoulder to the bottom of his lung and was preventing the upper area around his Glenn from adequately profusing. I really didn't understand until after the fact how this works. They had to put in 28 coils! I thought they would put in one coil and it would block off the artery. Apparently, they put the coils end to end until they fill up the artery. Amazing!

We had to be at the hospital at 6:15am to register and then were upstairs at 6:30 for prep. Let me say that the team that took care of us was wonderful! Nonetheless, by about 7:15, Zach was starting to ask for a "nack" (snack). He was hollering across the room to the nurses, "Heeeeeyyyy! I wanna 'nack!" When they didn't respond, he said "Mommy, she can't hear me. What 'da matter?" He would ask every new nurse or doctor or anethesiologist that came by to talk to us for a 'nack. This one nurse, Jerrard, was so good with Zach and brought him a bunch of those fake tattoos and let Zach pick out 3 or 4 of them. I thought they were for him to take home, but turns out, they put them on Zach while he was asleep for the cath, so Zach would be surprised to find them on his arms, tops of his feet, and one right over his heart zipper! I'll try to get a picture of this one later.

Finally, just before Zach flaked out from hunger, our nurse brought him a syringe of Versed. He sucked it down like it was good. A few minutes later, as he sat watching TV, I had my arm around him and all of a sudden he sort of laid back on my arm like a ragdoll. He had this goofy grin on his face, and his eyes were about half closed. He giggled a little bit and tried to talk, but couldn't seem to make a word. He was a happy drunk!

After the cath, with Buzz and Woody by his side, he's still very groggy and ready to "Goooo home!!!"

On the way to x-ray to make sure all those coils are still in place.

 

So, now we have to keep him still until Friday. Ought to be interesting! This boy NEVER sits still! Please give me some ideas of quiet activites that have worked for you.

Cardiology checkup

Zach had a checkup with the cardiologist this morning. Dr. R is following him closely in preparation of his upcoming heart cath on April 6 at MUSC. He did another heart cath and said that everything looks as good as it can get. His leaks are the same (not worse - PTL!), murmur sounds the same, systolic function (whatever that means) is as good as a healthy heart.

I asked about Zach's weight (he was 30.3 lbs) and if we should try giving him something to supplement his diet. He is a typical preschooler in that he eats mostly chicken nuggets and mac and cheese. He likes baby carrots w/ ranch and will eat green beans with a lot of encouragement. He loves fruit. The problem is, he doesn't drink much milk and lately doesn't eat cheese except on pizza. He does like yogurt and eats 1-2 tubes of Go-Gurt a day. He said it would be ok to try some Pediasure. He just doesn't want to overdo it because he is pleased with Zach's growth thus far and proportionally, his weight measures up to his height (no pun intended). He doesn't want him to get chunky.

One thing that he said bothered me a bit --- no, a lot. He said the heart cath would help them assess whether Zach was a good candidate for the Fontan. Not sure if he meant "right now" or "ever" and I didn't think to ask at the time. So, not having the Fontan means... what? Anyone with any insight on this, please chime in and calm this mama's nerves.

The biggest blessing of our visit with Dr. R is that he prayed with us! We circled up and held hands, Zach included, and had prayer for Zach's cath, for safe travel to MUSC next month, and for wisdom for us as Zach's parents. How precious! We are so blessed to have a wonderful, Christian doctor!

A new normal?

We have had a concern with Zach lately. When he is playing, he often seems like he is out of breath. His breathing just doesn't seem to match up to his level of activity anymore. He can just walk through the house and he is breathing more heavily than before. We visited the pediatrician to make sure he didn't have anything going on from when he was sick with walking pneumonia back in December --- his oxygen sats were right where they usually are in the mid 80's. Then I talked to his cardiologist. I described what is happening and asked if he was breaking out in a cold sweat or if he was panicky. I am not seeing either of those things. He said this may just be Zach's new "normal" until his next surgery. He said some children will self-limit and some will just push themselves. Zach has always played hard --- every moment of every day. He is a wild man. I guess he is just outgrowing his current capacity. Just a reminder that he is not normal. Anyone else seeing this trend with your cardiac kid?

Like the Energizer Bunny!

We go back to the cardiologist Feb. 5 for a checkup. I'm not sure if he will do another echo or not, but I do know he is interested in his weight.

So, MUSC finally called to schedule Zach's heart cath. It will be on Apr. 6. We will go down the night before. Last time he had a cath done (at 8 months old, before the Glenn), we stayed that night with some friends of ours in Charleston and I'm glad we did because Zach did not do well. He was crying and crying and crying, so I fed him a bottle, which he threw up later that evening. We were so afraid that he had aspirated. The friend that we were staying with actually works at MUSC. She listened to his lungs and reassured us that he was fine. I'm not sure if he was just in pain or what, but at least this time he will be able to talk to us and hopefully give us a clue about pain, hunger, etc... I still don't like the idea of taking off and driving home 4 hours with a freshly operated on cranky child. So, we might just have to find a way to stay over the night after the cath, too. Just to settle this mama's nerves. Sigh...

From the heart cath, they will be able to formulate a plan of action for the Fontan. We know it will be sometime this summer. It just depends on his weight. Last week at the pediatrician he was 31.2 lbs, so I figure he will hit the 33lb mark in 2-3 months. He has not been eating as well lately, so I am just waiting for his next growth spurt to kick in.

We appreciate your prayers for our little wild man and his heart!

Heart hugs,
Pam