Thursday, October 28, 2010

School-Made Decorations

Caleb worked on the parts for "Mr. Scary Pumpkin Head Scarecrow" all month at school. The parts came home today and the boys and I had a blast putting him together!

Bye Bye MUSC!

Tuesday, October 26, 2010

Going Home!

We have the OK to go home! Graysen was very happy to hear the news. The CT results were good and the aneurysm is small.

Monday, October 25, 2010

Settled In

We are settled into 7B for the night. There weren't any beds available in 7C, so we were "bumped" to 7B. Unlike being "bumped" to "Pre-pardum" during our first visit, I am very happy with the nursing staff on 7B.

Graysen is settled and is enjoying his mac & cheese dinner and third Sprite. He was able to enjoy the Child Life Atrium playroom earlier this evening. Of course, he did not follow his doctor's orders of not using his legs. He was supposed to be rolled down there and sit and play. He didn't obey even though Lee and I constantly told him to sit down. I even caught him jumping down from a 12-inch step. Not good.

We are going to spend the rest of the evening relaxing and watching "House M.D." I would love a glass of wine right now, but I will have to settle for something from the Cafeteria. Hopefully we will all be able to get some rest tonight. Gray has three different tests scheduled for tomorrow: x-rays, echo, and CT, starting at 6 AM.

Thank you all for your prayers and thoughts today. They gave us peace and Graysen is doing great!

Here are a few pictures from this evening:

Iron Man has had a rough day too: EKG, blood pressure measurements, ID band, heart cath...
Graysen ate every morsel of his lunch.
Playtime on morphine and versed.
Graysen came back from the Cath Lab with Iron Man tattooed on his chest.
Moving to 7B.
Time to go to the Atrium!

Cath Report

The doctor came and spoke to us to share the results of the cath procedure. There was significant narrowing of Graysen's left pulmonary artery and narrowing where the conduit was sewn onto the pulmonary artery. They ballooned through the narrowing in the left pulmonary artery with satisfactory results.

I can't remember the word that the doctor used, but one (out of three) layers of the left pulmonary artery were damaged during the ballooning. This is an undesired consequence and will need to be assessed. They are going to do a CT angioplasty tomorrow morning to assess the damage.

Nothing detrimental will happen at this point, but it may limit what they are able to by cath in the future since the wall is not as strong. It may mean choosing open-heart surgery for future work instead of cath for particular procedures.

Graysen's conduit and valve look good. The valve is working great and there is limited calcium and build up in the conduit. The doctor expects that this conduit will last for a while. However, narrowing of the left pulmonary artery, narrowing where the conduit is sewn onto the pulmonary artery, and the "spot" on the wall of the left pulmonary artery will need to be monitored over the next year.

As I have learned with all heart procedures, the doctors are always watching something and life is taken in steps with these babies. Assuming good CT angioplasty results tomorrow, we should be "good" for another year! All I can say is that I am scared to see Graysen on "full" energy!!!


Graysen is recovering in "Same Day." He has to stay completely still until 1 PM at which time he can sit up and start to move a little. He is watching "Bolt" and is doped up on morphine, tylenol, and versed.

They said that we can expect to be moved to 7C around 4:30 PM. They keep patients in Same Day for a while hours because the nursing ratio is 1:1 and they can keep a close eye on him during these first hours.

PAGE 11:27 AM

"Graysen is back in Same Day. You are welcome to come see him."

Lee and I are headed to see Graysen. He will be sedated for another two hours to minimize the risk of bleeding. After that, he will be allowed to recover and be moved up to 7C.

PAGE 11:10 AM

The case is almost done. We will let you know when Graysen is back to Same Day.

PAGE 10:01 AM

The doctor is doing the ballooning.


The catheters are in. The doctor has started measurements.

Cath Lab

Graysen was rolled back to the Cath Lab around 7:30 AM. We have a pager and will post updates on the blog as we receive them.

This is our first visit to MUSC where Graysen has been old enough to take advantage of MUSC's Child Life Services. The team is amazing and is focused on reducing stress and making the visit fun. Maybe he will even be well enough to play in the Child Life Atrium tomorrow. Here are a few pictures from our morning:

Dr. Graysen checking Baby Ghost's heart while the doctor checks his heart.
Graysen decorating his strawberry-smelling anesthesia mask with stickers.
Time to check Iron Man's blood pressure.
The next three pictures are when Graysen was doped up with "silly medince." He could not even sit up by himself, but wanted to keep playing so badly. He fought the medicine very strongly and never did quite fall asleep. Here are pictures of him playing while continually falling down.
Graysen and Iron Man looking at the doctors as they roll him down to the Cath Lab.
Just a few notes...

1) It has been two years since Lee and I have been at MUSC. A lot has changed in that time, some for better and some for worse. For example, the cafeteria is modern and great, but I am very disappointed that 7-C's waiting room has been eliminated. That is where one of us was planning on camping out since I cannot imagine both of us fitting on the little "sofa" that is usually in a 7-C room. I am not sure what we are going to do tonight, but I really do not want to pay for another night in a hotel. We'll see...

2) Call my cell phone if you need to contact Lee. His phone self-destructed sometime in the middle of the night.

Sunday, October 24, 2010

Night Out on the Town

Charleston is a beautiful city and Lee and I enjoy spending time here. We took Graysen out tonight for a special Mommy-Daddy-Baby date. He had a great time, as can be seen from the pictures.

We went to dinner at Hyman's Seafood which is one of our favorite restaurants here in town.
Mommy let me have TWO SPRITES!!!
Mmmm... Hyman's is good.
We can't forget about the ice cream!
As we were leaving, Meeting Street was overtaken by about a hundred zombies. It was something to see. At least we were on the other side of the street.
Now it is time to get some sleep since we have to wake up at 4:30 AM to get to MUSC by 6 AM. Maybe we shouldn't have fed our baby so much sugar this evening...

Off to Charleston

We have arrived safely at our hotel in Charleston. Graysen has been a sweetheart the entire trip and is loving the one-on-one attention from Mommy and Daddy. We stopped for lunch at Denny's in Columbia, where Graysen enjoyed his special lunch.

Sunday, October 17, 2010

Pictures from Strawberry Hill USA

Heart Cath Date

MUSC called on Friday and Graysen's heart cath is scheduled for Monday, October 25th. Lee and I will leave for Charleston next Sunday. Please say a special prayer for Graysen on Monday morning as he undergoes this procedure.

Grammy and Grandpa's Visit

Grandma and Grandpa visited this past weekend. We had a great "Fall" weekend with them by going to two farms, Niven's Apple Farm and Strawberry Hills Farm. Lee will post more pictures from his camera, but here are a few from mine.

Fun at Chuck E. Cheese

Poor Little Gray had a rough week, three doctor visits in seven days. So, I was very glad that we could have some fun at CEC this past Thursday with Carson and Norma. All three kids had a blast and I love watching the joy in their faces while they play.