Saturday, June 12, 2010

Our LPCH Heroes!

Over the last year and a half, I have had three surgeries at Lucile Packard Children's Hospital. I stayed 10 days with the first surgery, 9 days with the second, and 8 days with the third. That's a total of 27 days spent with the most incredible medical professionals IN THE WORLD. We love our LPCH family, and cannot thank them enough for taking such good care of me and my parents. Here are some pictures of just some of the nurses, PAs, and doctors that took care of me during this last visit. Thank you from the bottom of my new and improved heart!!!

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Friday, June 11, 2010

A Great Report

Yesterday, I went for my follow up appointment with Dr. Y. Momma was a little nervous about the echocardiogram, because 1) she thought I might freak out about going back to a hospital, and 2) it was the first one I'd had since getting out of the hospital and into a normal routine again. Of course, I handled the visit like a rockstar, as usual, and my heart has never looked better. I told her not to worry, but you know how Moms can be...

Dr. Y was amazed at how well my heart is functioning. That really big leak that I used to have when I was a baby is completely gone now! I now have some minor leakage in my mitral and aortic valves, but he's not worried about it, so I'm not either. Dr. Y said that he is always hesitant to tell patients they're "in the clear", but he really believes that the worst is behind me. Once I get past this 6 week recovery time, I won't have any restrictions on physical activity, so I can spend the rest of the summer swimming, running, and wreaking havoc at the playground--yay!!!

Here is a picture of me with my buddy, Dr. Y.

Center of Attention

Well, we made it back safe and sound. I am so happy to be back in my own house with my own toys and my own kitties. To make our return even better, my Great-Grandma Norma, Grandma Donna, Papa Jim, and Aunt Carol came for a visit. They brought me presents, played with me, and showered me with attention--just the way I like it! That is why I haven't updated you all for a while, but since they left last night, I have a little more time on my hands.

Thank you again for all of the prayers and good thoughts while I was in the hospital. I am a tough guy, but I still couldn't have done it without all of you!

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Thursday, June 3, 2010


Well, we did it...we busted out of the hospital! Emmett was discharged this morning and not a moment too soon :)

In a way, it was a little sad saying goodbye to the hospital and the wonderful staff who have taken care of Emmett over the years. Yet, with huge smiles and warm hugs we all agreed that "We hope we never see you again!" At least not under the same circumstances.

Emmett is now back at the hotel, taking a little nap in the bed next to me. I just look at him and marvel at his strength and courage. When God made him, he certainly knew what He was doing.

Thank you to all of our friends and family members who followed E's story, sent cards and gifts, prayed for him, and cheered him on. We are very, very lucky to have you all in our lives. And a HUGE thank you to the doctors, nurses, and staff at LPCH--thank you for treating our son like the unique and amazing individual that he is rather than seeing him as "just another patient". You will forever hold a special place in our hearts.

Much love from Cali,
Missy, Joe, and of course, Big E

Wednesday, June 2, 2010

Light at the End of the Tunnel

Last night, Emmett moved out of the CVICU and into a step-down unit on 3 West. This was a huge accomplishment--only 5 days post surgery! That is the soonest he has left the ICU yet. We requested a twin size bed so that we could lay next to him and watch movies. Last night, Joe stayed, and tonight I'll be the lucky one snuggling up next to Emmett. We have tried to get him a little exercise today. We went for a couple wagon rides, sat outside in the sun, and played with him on the floor a bit. He can't hold weight on his legs yet, but we'll keep trying. He STILL won't talk to us. I would be concerned, but he did the same thing last time. If this silent treatment is any indication of what he is going to be like as a teenager, we're in serious trouble :)

He had a chest xray, echocardiogram, and bloodwork today. As far as we know, they all looked good. They took out his temporary pacing wires today and removed his last IV. They just now took him off oxygen to see how he does. If this positive trend continues, he will be discharged on Thursday. God is good!

The Big Move!

Sharing my new bed with Mommy

Taking a stroll in the sun

Tuesday, June 1, 2010

Movin' on Up (to the West Side!)

Having another good day medically speaking. Unfortunately, E's a little depressed and not quite himself yet. He only says the occasional word when he needs something, but otherwise he is giving us the silent treatment. Last time around, this stage really bothered me (and brought me to tears numerous times over a three day period). This time, however, I have the advantage of experience, and I KNOW that Emmett will be just fine once we step out of these hospital doors :)

They just took a chest x-ray to check his lungs, and if all goes well, they will be moving him out of the ICU and into a regular room on 3 West tonight. Fingers crossed!

Will post more as we know it. Thanks for all the prayers and positive thoughts!