Update

OK, to make up for all the pictures I have NOT taken lately, I thought I would post a few to document our last few days.



They have a sense of humor in the cath lab. You never know what you're going to find afterward...

When they did the cath, they went in both sides --- the left and the right groin. This is one of the 2 pressure dressings that Zach had on his catheter sites (along with a strategically placed washcloth). You can see the smiley face there as well as the time that the dressing was placed, to let recovery know how long to keep him laying flat. The tape is very thick and very sticky. Zach did great when we removed the first one and hollered like a banshee when we removed this one. I have written about the extreme trauma caused by Band-Aid removal around our house... he will need therapy later in life, I'm sure!

There has been an awful lot of this going on these past few days!

Cheeeeeesy grin!

You can see how he is holding his right arm. He is using it very little. 

  

Bill took Zach to the pediatrician today and he agreed that Zach is definitely in some pain. He sent him down to x-ray and they did about 8 or 9 films! It wasn't long before the nurse called back to say that they did not see anything at all. So, what now???

I just got off the phone with our wonderful cardiologist, Dr. Raunikar. He said that it is possible that the position they had Zach in for the 3 hour cath may be the cause of his pain. (I guess I can relate it to the jaw pain I recently had after a 2 hour root canal. Ow!!!) When we put our bodies in positions they aren't used to, we feel it!

Silly boy --- even when he is in pain!

So, we are to give Tylenol for a couple of days and use a warm compress and see how he does. If he is not better then we will make a cardiology appointment for later this week.

These Cardiac Kids... always keeping us on our toes!

Feedback needed...

I need to draw on the experience of all you other heart moms out there. We are trying to figure out something that has been going on with Zach...

Ever since we got home from MUSC, Zach has been complaining that his right side hurts up under his arm. He is really guarding that arm, holding it against his side and not using it much. We cannot pick him up under his arm and he does not want to lift his arm over his head. He has been on restricted activity since his cath, so he has had not opportunity to injur himself. I called MUSC and they had never heard of anything like this after a cath. I also talked to cardiology over the weekend and he could not think of any reason for the pain, unless it has to do with them raising his arms over his head during the cath. We have an appointment with the pediatrician at noon and have a call in with our cardiologist.

Anyone ever experienced anything like this post-cath?

I went to the doctor Friday because of a painful rash on my shoulder and under my arm and was diagnosed with shingles :(  Very painful. The blisters are about dried up now but the pain continues... My fear is that this pain Zach is having is the precursor to the rash, although no one is supposed to be able to catch the shingles from me. If anything, he would get the chicken pox (but he has been vaccinated so hopefully he is covered there.)

I appreciate any light anyone can shed on our issues!

Cath Success!

Zach was such a brave little man today! We are so proud of him. He was in the cath lab for over 3 hours today and Dr. Bandisode said everything looked great. All his pressures were right where they want them to be. She placed a device (a stopper of sorts) in the fenestration and they coiled a couple of co-lateral vessels while they were at it. Co-lateral vessels form as the body tries to compensate for itself.

She said that we can expect those co-lateral vessels to open up from time to time throughout his life. They serve no purpose and actually cause his heart to work harder. Hopefully, we won't see MUSC for a few years before he needs another cath done. I can truly say that, as much as we owe to the great folks at MUSC, we will not miss coming down here.

Zach is resting peacefully here in the hotel, watching Toy Story 3. We will be ready for bed soon since we are all wiped out. The next 3 days will be filled with lots of couch-potato activities. Please pray that we will be able to keep the little man on the couch!

Also pray for some new heart friends that we met this morning in the waiting room. Harrison (2 months old) is in PCICU right now. He went to the pedi on Tuesday for upper respiratory symptoms, was admitted to the hospital for tachycardia, and was finally transferred (flown in) last night. His mom and dad, Paige and Kyle, are really having a tough time as they watch their son suffer. As of this morning, Harrison's heart rate is still as high as 220. Please pray that the doctors will be able to find a drug therapy to bring his heart rate down and as they try to figure out the cause of these issues. I feel blessed to know that God used us to reach out to them in their time of need.

Thank you to everyone for all your prayers for us! God is an amazing God!

Cath-time

We will be heading back down to MUSC this week for Zach's heart cath on Thursday morning. This is a routine thing... during the Fontan Completion, which he had last July, they left a fenestration, or small opening that acted as a pop-off valve in case the pressures got too high. Now it is time to go in and close it up.

After going through surgery last summer, a heart cath seems like no big deal. Nonetheless, I am nervous and full of dread and ready to get it over with and just wishing we could ride those 4 hours and just go to the beach and the Aquarium and skip the whole thing. Sigh...

We haven't really talked to Zach a whole lot about it yet. I found out after surgery that I have to be careful not to talk about MUSC in earshot of him because he immediately gets fretful and starts in with a barrage of questions. No sense worrying him prematurely. We will start talking to him this week and reassure him about it. I know I can rely on the many prayers of our "heart buddies" to bring us through!

I have to confess that I have taken NO pictures of my children all month! Zero. Zilch. Nada. Bad, bad mommy!!! So, here are some pics of Zach on his recent field trip to a local zoo (taken by his teacher, of course).

 His teacher said he was like a mountain goat --- he climbed all over every rock in the place!

He told me about "the COOLEST thing ever"... getting to feed the lambs with a baby bottle (nevermind that it looks like these are baby goats, it was still the COOLEST thing ever!)

 They got to take a bus ride around to feed various animals - you can see a llama or alpaca, an ostrich or emu, and some deer in this shot.

Ewwww!

13

13. Some consider it an unlucky number. I consider it a very blessed number. 13 is the number of years that we have spent with our beautiful, bright, talented Rebecca. 13 years ago our baby girl looked like this...

Now... 13.

Daddy's little girl

Nana made an incredible cake!

Make a wish!

Minute To Win It games in the garage!

What a nutcase!

So blessed to have great friends!

Proud Papa...

...and Nana.

Rebecca, we are so amazed at the young lady you have grown into! You are so beautiful on the outside, but more importantly, you are beautiful on the inside. We can't wait to see what plan God has for your life!



Celebrations...

There is so much to celebrate today! Praise be to God --- Mason and Owen came through surgery today like champs. Andrew also had a cath that went smoothly. Tina was an awesome advocate for CHD Awareness Week on a local news show. Rebecca made the softball team. The VARSITY softball team!

And this...

No matter how old I get, my family always makes it a special day.
Thank you Bill, Rebecca, and Zach! I love you!

CHD Awareness Week

Feb. 7-14 is CHD Awareness week. A time to make others aware of what we heart families live with day in and day out. A time to educate the public about just how common CHD is and just how little money actually goes toward CHD research. A time to advocate for our cardiac kids. A time to show just how much passion we have about making a difference for the 1 in 100 babies that are born with CHD.

I have been trying to figure out how our family can make a difference. One heart buddy, Logan, and his family operate "Cuddles From the Heart" --- they make and collect blankets which they donate to CHD patients in the hospital. Logan's mom, Stef, is an awesome advocate for CHD Awareness, using her blog this week to present testimonies of heart moms and dads.

Anna Grace and her Mom and Dad (Tina and Brian) are going to be on a local news show this Thursday sharing about CHDs and how it has affected their life. How exciting! I already have it set to record! Tina has also established a Heart Moms' Night Out once a month in our area. What a blessing!
Another heart buddy, Derrick, and his family make BraveHeart Baskets to give to cardiac kids when they are in the hospital. As a matter of fact, Zach got one when he had his last surgery. It was like Christmas morning!

Zach with one of the gifts from his basket - the blue elephant

Saturday, Derrick threw a CHD Pancake Breakfast at Fatz in Columbia. This Saturday, he is throwing another pancake breakfast at the Fatz in Easley. He is one busy boy! The proceeds will help them make more BraveHeart Baskets. How awesome is that?!

How can our family make a difference for CHD Awareness week? I think our first step will be to get some tickets to that pancake breakfast and to eat some yummy pancakes!