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.

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

Summertime!

I thought our blog was in need of a summertime makeover. I love all the FREE stuff that's out there for us bloggers, like Cutest Blog on the Block and Shabby Blogs. What others do you use, bloggers? I haven't gotten brave enough to design my own yet, so I make do with the freebies...

We have been busy these past couple of weeks. Daddy directed a camp for FCA last weekend. He said it was incredible! This is a picture of some of the 200 students at the camp during their Golgotha Experience, following in the footsteps of Christ on the way to His crucifixion. A very meaningful experience!

Rebecca spent last week at the beach with Nana and Papa getting S-P-O-I-L-E-D! They always have a blast shopping, swimming, shopping, eating, and shopping. She got some really cute stuff! Believe it or not, she is leaving Saturday to go to the beach again, this time with one of her friends. We will miss her, but I'm glad she is getting to go.

This week, Rebecca attended our local high school's volleyball camp for girls 6-12 years old. I was planning to upload a short video here, but Blogger has left out that icon on the tool bar for some reason. Anyone know anything about this? Anyway, here's a picture of our girl in action...

So, we have been trying to figure out what's going on with Mr. Zach this week. Since Saturday, he has had some tummy issues. He ran a low-grade fever on Saturday afternoon, but no more after that. He has had very loose BM's since then, once or twice a day. He doesn't particularly act sick, unless his tummy is "rumbly" but then again, he's not quite as wild as usual some of the time. I talked to our cardiologist to make sure it's not from one of his meds and he said just to make sure he is not getting dehydrated. We have tried to stick to the diet that they recommend - BRAT = bananas, rice, applesauce, and toast - but he doesn't like half of those things. He keeps asking for Chick Fil a and chocolate Teddy Grahams. Not so good for a sick belly. I do not want to take him to the doctor's office for fear of picking up a bug there. We are almost 2 weeks away from our surgery date, so I am getting VERY antsy. Any ideas of what to do for him?

In preparation for surgery, have your doctors recommended quarantine? We are really wanting to take Zach to see Toy Story 3 but that makes me nervous to think about taking him out around a lot of other children.

I am feeling a lot of anxiety about keeping him healthy and about surgery in general. Each day more and more, I feel the anxiety "boiling up" and the feeling of panic about overwhelms me. I keep reminding myself that God is in control. I have to depend on Him and allow this experience to strength my faith. So hard...

Thanks for checking in on us. We covet your prayers as we head down the home stretch toward July 7!

Big announcement and Family Beach Trip 2010

Things have been so crazy these past few weeks! I noticed that I have not posted in over 2 weeks! I have so much to update here... where to begin???

Well, first of all, I won't keep you guessing about my big announcement (lest some of you jump to drastic conclusions like "Pam must be expecting!" Let me assure you that 40-year-old Pam is NOT EXPECTING!) But there are going to be some big changes for our family!

I am the new School Library Media Specialist at a local Junior High School!

I completed my degree last December. We were originally planning to wait for me to find a job until Zach was ready for full-day 5K, but God provided this opportunity now. I don't know what the economy is like in terms of education where you live, but around here, things are tough. Word is, it will be worse for the 2011-2012 school year (when I was planning to hunt for a job). So, I am taking this job.

We have found a great preschool for Zach that is only about 1 mile from my school. It will be nice to have him close by in case he should get sick or something. He will be delayed in starting school because of his surgery --- his cardiologist said we could expect about 6-8 weeks, so that puts us at the end of August. We have a lead on a young lady from our church to stay with him some when Bill needs to work away from home.

Some days, I think I am crazy for attempting this right now, with all that we have ahead of us for the month of July. Please pray extra hard:

• for Zach to be healthy prior to surgery so it won't be postponed
• for surgery not to be postponed by us getting bumped
• for Zach's recovery to be complication-free so we can get home and do some real recouperating.

Thank you so much for your faithful prayers!

Beach Trip 2010

We went last week to our annual beach trip with my family. For the past 10 years, my folks have rented a huge house for the whole family and extended family to gather at. It is always so much fun but so crazy with 20-25 people there! This year, Zach had an awful reaction to the sunscreen on the first day there. The crazy thing is, I know we used that same type of sunscreen last summer with no problems. I went and bought some milder stuff to no avail. He was pretty miserable and it affected his behavior as well. I ended up getting some Benedryl, which helped with the itching and made him sleepy rather than hyping him up. (One time, I gave Rebecca some Benedryl and her eyes stayed dilated for several hours! She was a wild child on that stuff! So, needless to say, I was a bit concerned about giving Zach the stuff, being that he is already a wild child!!!) He is no longer itching but still has the rash on his back, chest, and belly. The doctor said to let it clear up and then try a small patch with a basic cream sunscreen for babies. He said to avoid the spray-on stuff.

We have been really slack about having professional pictures made. Here's some pictures that my sister-in-law took of us on the beach. Zach cooperated for just a few pictures, but I was really pleased! I think they look quite professional!

I included the one of Zach on the steps going back up to the beach house. He had decided that the photo session was over!

We had a ping pong table, pool table, and foosball table in the media room. Needless to say, that is where the kids spent most of their time. This is Rebecca and my sister's two children.

  

  

Zach in his favorite hiding spot --- under the pool table!

As you can see, I have a big family. There's my mom, my 4 siblings and their spouses and kids, and some of my aunts and uncles from my mom and my dad's side. Lots of love to go around!

    

We also had a pool --- it was well used despite the water being quite cold.

We set up tents on the beach and Bill and Zach put them to good use for an afternoon nap.

In the afternoons, there was a huge tidepool for the kids to play in.

Low tide provided lots of room for a game of chase!

Our little heart warrior was just happy to splash in the waves! Don't you love the reflection in the sand?

Hope you are enjoying your summer, too!

How to prepare...

Today Zach overheard me telling my mom on the phone that we had to go to the hospital on April 6th. His little brow wrinkled up with worry and he said, "We goin' to da hopital? Who gonna lay down?" (I think he was asking who was going to get poked and prodded?) He was obviously starting to get anxious about it and he put both his hands over his eyes. I reassured him that Mommy and Daddy were going to be right there with him and that it would be a lot like when he goes to see Dr. Raunikar (our cardiologist). I told him that they would check his oxygen and blood pressure and weight and listen to his heart. I promised that we would get to see some old friends --- Dr. Bradley (maybe) and Dr. Bandisode. I told him that we would meet some new friends, as well. I told him that maybe we would get to meet the same people that had taken care of Derrick and Zeb and Anna Grace, our local heart zipper friends.

My heart breaks to think about what he will have to go through in just a couple of weeks. I get nervous as I think about talking about the procedure more with him as the time draws nearer. At the Palmetto Hearts conference that we attended in February (which was wonderful!), the Child Life specialist from MUSC spoke about this very topic. I was surprised to learn that it is best to begin preparing your preschool child only about 2-3 days prior to the procedure/surgery. Because preschoolers have no concept of time --- Zach's famous for asking, "Am I gonna take a nap tomorrow or later?" --- talking about surgery that is weeks away will only cause them anxiety. Makes sense. On the other hand, she told us that it is not a good idea to spring it on them, either. She knew of one family that told their child that they were going to McD's but took him to the hospital instead. Not a good idea.

I did show Zach this picture from after his Glenn at MUSC.

Of course I have other pictures that I wouldn't dare show him for fear of scaring him.

For those of you with older children, how have you prepared them for procedures/surgery? What worked and what didn't with your child? I love that we can learn from one another!

Enalapril, Lasix, and Pull Ups

Zach had a follow up visit with the cardiologist this morning. If you'll remember, about 2 weeks ago, we told the dr that we had noticed that Zach had been breathing harder as he plays. We had another chest x-ray done and Dr. R. said it looked clearer (he saw pulmonary vascular congestion 2 weeks ago). Just in the past few days I have noticed that Zach's breathing has been a bit better, so maybe that was the cause.

We are still on Lasix 1x a day. That stuff sure does work quickly! We are diligent about going potty every 20-30 minutes for about 1.5 hours after he takes it and we wear a Pull Up just in case! So now, he is bumping us up from 2.0ml to 3.0ml of Enalapril 2x a day. That is a bigger increase than we have ever had before. He said that could increase tee-tee's too. Lovely. Anyone notice that a dosage increase of Enalapril affects behavior for a few days? We have seen that in the past.

The dr could have gone all day without making me realize that Zach's heart cath is a little over a month away. Yikes! In my mind, April seems like a year away. But I know it will be here before we know it! I am nervous --- it has been so long since we have had to have anything major done. Zach had the Glenn at 9 months and curcumcision at 16 months. Now that he is older, I an anxious about how he will deal with it all. This time, he will be very aware of everything that is going on. How will we prepare him? How have you prepared your Brave Hearts for procedures and surgeries? What worked and what didn't? Please post your ideas in comments.

More from the funny boy:

These boots are made for walking,
and that's just what they'll do.
One of these days
these boots are gonna walk all over you.