Life is Beautiful.

I'm in tears, as I write this. For some reason they came out now, but they are tears from months ago. I know most heart families know Paul Cardall, whether it is personally, or strictly through word of mouth or internet super highway.. But to say that this man has been

through a lot is an understatement. I realize that our situation isn't the same. But when I watched this video, it was like reliving this last summer. I watched how he made his room in the CSU his home. We actually stayed in 3086 during one of our visits. I recognized the staff,

I recognized the food, I could tell you how to get to each place in the hospital they filmed at. But it was oddly strange that though this was all so familiar, a part of me felt so sad and scared. I thought to myself "how could they do that? how are they living there at that hospital,

how is his wife and child handling seeing him with a tube down his throat unable to speak?" when I went through all these moments myself. I remember so many people asking me "how are you holding up? how are you managing? I don't know how you do it!" and at the time,

I really had no answer or explanation. I learned after Jack's first surgery that something comes over you, something that keeps you strong and helps you live through these painful and excruciating moments where you spend night after night in a hospital room on a couch.

You wake up at 4:30 each morning when the IV team comes in to wake your child and poke him with a needle to get labs in the morning. You listen to your child ask EVERY DAY if they can go home.

Writing all this now- I have no idea how I did it. It hurts me so much now to imagine Jack going through all of it. But I know now that I was strong for him, and I didn't fall apart or cry then, they way I am now. I can go downstairs and watch him play cars on the floor,

or chase the cat up the stairs, or lay on his pillow and know I get to put him in his own bed tonight, and let him wake up and have a fun day tomorrow.

Jack is so happy to be alive. I can say that because I watch him. He doesn't want to go to bed or sleep in. He wants to absorb as much of the day as he can and do as much as possible, BECAUSE he can.

My gratitude for the people at Primary Children's grows more and more each day. Especially when I am home, and comfortable and I watch video's like this one, where I see the same people I saw everyday when I was up there, STILL at it, and STILL doing the same thing to help others.

This is an amazing work, and these are amazing people. I am so grateful for my son, and the people that helped keep him here. And I am also grateful for Paul, who did such an accurate job portraying the life of a heart family.

In case you were wondering-

Jack is doing just great.

He has been busy, running ALL over the place, and barely getting tired. It's amazing, because he really did have a lot of energy in the first place, but with improved blood flow and oxygen, he has become unstoppable. He is 25.5 lbs, which means we are ALMOST back to the weight pre-op. His feet are huge, and he is tiny, (due to his low-fat diet that we are weening..) but he is on the right track.

We have safely made it to full recovery. Although he is still on diuretic's, I can go to bed and wake up without that feeling in the pit of my stomach telling me there's a chance he may get another pleural effusion. The doctor's have been quite careful about weening him off his med's. We just deleted Aldactone from our daily administration of medication and soon- maybe, we'll knock off a dose of Lasix.

But all in all, Jack is having a ball and loving life. You can tell that he is so happy to better, he doesn't want to miss a minute. So he goes to bed late, and wakes up early ready for the next thing.

Thanks for checking in on him- we all appreciate it.

If you haven't taken THIS fun jog down memory lane... you should. Especially heart familys that need to see how resilient and amazing these kids really are..

Sweet little Bridger

A dear heart family lost their little boy last week. Bridger was such a fighter, and he had the best parents during his lifetime to help support him and love him through and through. Bridger was Jack's neighbor in the PICU during April, and he was always such a sweet spirit. He would be playing on the mat on the PICU floor and soaking up every minute as though he knew to cherish the moments. He was an old soul, and a wise little heart baby.

Bridger's mom Staci was a wonderful example to me. When I was crying after day 5 in the PICU I realized that they had been here for weeks and I immediately was filled with gratitude for my son's strength, and his tolerance for hospital life. After our many returns to Primary's, during our last visit I was sitting on the patio after a really hard day with Jack. I was feeling like I was losing his spirit and his personality due to our 3 weeks of living at the hospital. Staci came outside and said she thought I needed to talk, and she was right. She was the perfect person to talk to. She stayed every day there with Bridger for weeks and weeks, and her attitude never buckled. She was such an inspiration to me.

I hope the Smith's will always carry Bridger's strength with them, and that they understand how influential they have been as a family unit. We will always remember Bridger and his sweet parent's. May everyone's thoughts and prayers be with them, as they say goodbye.

Ok, for the sake of those who only check this blog..

Jack spent three weeks at Primary's during our last stay. They did a "Thoracic Ligation" and a "Pleurodesis" while we were there which is where they went in through his side, clamped off a bunch of his lymphatic system to help prevent leakage, and then they scraped the inside of his chest wall so the lung would heal to it, thus eliminating any cavity for fluid to accumulate.

After that surgery, Jack's diaphragm was paralyzed on the right side. So, six days later, they went BACK in to pin down his diaphragm. That was successful, and 5 days after that, we went home.

I'm a crazy, psycho worrier ANYWAY, so everyday I wake up and wonder if his eyes are puffy from sleeping on his face, or if he's symptomatic again. Though he is still under weight (always has been, since birth..) he is doing really well, and has a LOT more energy than ever. He can last much longer while playing, or swimming, or running, than ever before. It's wonderful.

He is on Lasix 3X, Aldactone 3X and aspirin 1X, daily. He does great with his med's. Sometimes he asks for them.

This has been a remarkable journey- one that we never expected. And I have more respect and admiration for Jack than I thought could be possible. He was SO strong, and was SO great in the hospital. Even the times that we all were about to lose our minds...Jack still managed to maintain cooperation while there. I'm so happy for him.

Though this is post Fontan, I hope to keep this blog updated for those who want to know about "after" the surgeries. How is life different? How is the child better? Do they have limits?

There are all questions I had, and now I can be one of the people to answer them..

Wait, what?

We are back up here again, with another pleural effusion.

To keep myself from seeming redundant, I'll answer the questions we've been getting the most of, quickly, and as short as I can.

-No, it's not as bad as the last few.
-No, we didn't bring him up here suspecting this. We brought him to a pediatrician at the U because he's had a cough and Josh had had pneumonia. But they wanted an x-ray which is how we discovered it.
-No, the Doc's don't know why it happened again, and they are concerned, but they aren't going to do anything drastic at this point (like a cath,) because it could be the cold that is associated with this episode.
-Yes, Jack is pissed.
-Yes, we are about through with the novelty of pleural effusions.
-Yes, Tom and Becky are back. They are home recovering from a bad flight, long trip and exhaustion. They'll come up tomorrow.
-No, we don't need anything right now.
-Yes, they put in a chest tube, it will be in for a day or two.
-Yes, we will keep him on diuretic's for a longer time now.
-Yes, we are worried about the potassium levels.
-Yes, they'll have to draw his blood every morning before an x-ray.
-Yes, I'll be spending each night here that he needs to be here.
-No, we hope this won't happen again.

So my theory, is that last week when we took his diuretic down to once a day, Jack began to get sick and like any mother would- I gave him "lots of fluids" to help his cold. So we bumped UP fluids after bumping DOWN diuretics which probably didn't help, and Jack has been doing alot of violent coughing which I'm sure aggrivates the area around his lungs and doesn't help either.

So here we are again. People recognize us now, nurses know our routines and what we like and don't like. Our cardiologist is going out of town and I hope all these people I haven't worked with before know what they are doing, and who they are dealing with. We are hoping to be out of here by the weekend, so we don't have to tack on Father's Day to our stays here during Easter, Mother's Day, and Josh's Birthday.

Thanks to those who are praying, and thanks to those who have expressed their concerns today. We love and appreciate you all.

Thank you, Primary Children's

Josh and I agreed as a family to participate in the telethon happening at Primary Children's, to share our story in hopes of inspiring people to continue supporting the Primary Children's Medical Center. We will be on air between 11-12pm on Sunday May 31. I'm not asking you to watch us....really, I'm just letting you know that there is a opportunity for you to "help" if you feel so inclined. We our forever indebted to those at Primary's who not only performed life saving surgeries on Jack, but those who have helped Josh and I have a comfortable experience with our son's life threatening heart defect. Here is some information:

The access to good care is a miracle that happens throughout the year at Primary Children's Medical Center. Once a year the Utah community and KSL Channel 5 come together to celebrate those miracles during the KSL/Primary Children's Miracle Network Telethon.

The 27th annual Primary Children's Telethon begins Saturday, May 30 at 6:30 p.m. and continues through Sunday, May 31 at 5:00 p.m. on KSL Channel 5.

Primary Children's is the only full-service pediatric hospital in the Intermountain West equipped to care for the total child. The hospital provides specialized care to each child, regardless of ability to pay. Last year, Primary Children's expended more than $13.4 million to cover more than 11,337 charity-care patient visits.

Contributions can be made during the Telethon or by mail to Primary Children's Medical Center, P.O. Box 58249, Salt Lake City, UT, 84158, or online at www.primarychildrens.org.

Finally.

So this is what we've been waiting for. A good 2 months after surgery, Jack has managed to keep his chest clear of pleural effusions. We are on 2 doses of Lasix, daily, and the aldactone and potassium. He is acting normal- has more energy than ever...and is his happy self. I remember hearing from other Fontan mom's, that suddenly after this last surgery their child had bounding energy, and I was thinking "Jack ALREADY has energy NOW, what will he be like AFTER surgery!!?"

Well, he is MORE energetic, if that is even possible. He's louder, faster, stronger- it's amazing. It's like taking your car into the shop, having it be worked on for a few hours, then suddenly, your CAR WORKS! That is how quick it feels like Jack's abilities have changed. Even the fist time we were discharged from the hospital from this surgery, he could climb the stairs without stress.

I'm so grateful for this LONG, HARD process we went through to get here. It is more rewarding than I ever imagined.