Primary Children's Telethon

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.

Gardening.

I don't have a garden- nor would I be able to manage one. But in the spirit of Spring, I decided to buy some flowers and decorate my porch with them. I hope to keep each of them alive and thriving, but history proves that plants don't like me to mess with them. In fact they'd be better off alone. The plant I pay the least attention to in my house, is the oldest plant I have. It's almost 2 years old. That is a record for me.

These flowers came with minimal instruction, it is just the delicate balance between sunlight and water. So by fall, I'll let you know if there is a lustrous, lush, plume of flowers enveloping my deck, or if there are three empty pots sitting on my porch.

The way it's supposed to be..

So, I'm thinking of getting this in a 26x26, and hanging over my fireplace.

This is the most beautiful x-ray, not because of how clear it is, but because he went a whole week without getting an x-ray, and managed to keep fluid out of his right side.

Dr. Su wasn't there today, and he told me after we did bloodwork and x-ray to see a "Dr. Jou", who for some reason was nowhere to be found. The clerk told us to go home and he'd call us. I wanted to discuss Jack's bloodwork because I needed to know if we needed to still pump him with Potassium, which in some cases could be dangerous. So we waited some MORE- and still no Dr. Jou. So I decided to take things into my own hands Alli-style, and I went up to our second home, the surgical floor, and found an RN that recognized me. She was kind enough to look up Jack's lab results in the computer, and tell me that Jack's K is at 3.2, and it should be 3.5. So I then texted Dr. Su, who was kind enough to give me he cell phone number, and told him Jack's results, he said to stop one of the doses of Lasix, and continue the Potassium. This of course, was the official order- over text message. I also sent him a picture text of the x-ray, and he said it looked good- but would like to see it on a larger screen....

but believe me, this x-ray looks great.

So that is where we are. I have gained a bit of perspective, and I'm happy every time Jack screams at the top of his lungs because I know he has full lung capabilities. I'm happy when Jack asks me for 12 marshmallows. (I give them to him.) I'm happy when I see his incision site looking like it were never even touched, and healing beautifully. I'm happy when I go to bed- and wake up to his happy voice calling me from his bedroom.

Life is "normal" again, and I've never been so grateful for an average day.

Bubbles.

Bath time, always a fun thing.

Twenty-Ei8ht

Had a good birthday, love my boys, enjoyed the cheesecake, sucked down the crab legs, enjoyed the sunset walk.

Thanks.

Five Years, today.

(picture, courtesy of Jack)

Happy Anniversary to us. I'm not one for spelling out all my feelings for my husband all over by blog, and gloating about how great I have it, so I'll keep it simple.

The five top things I love about Josh:

1. I love the way you dream big. Nothing can stop you. That's the way it should be.

2. I love the way you stopped the car in the middle of the street and ran over to jump on a bag of leaves on the side of the street.

3. I love when you get down on the ground and play with Jack.

4. I love when you start conversations with "Do you know what I'm excited for?"

5. I love how you do whatever you can for your family.

There you go. Happy May 19th, Love.

Did this really happen?

We went to Primary's today and ACTUALLY DIDN'T GET ADMITTED. Jack's x-ray looked normal, which is pretty incredible for not being on any diuretic's, and having such a pest of a pleural effusion. His bloodwork looked ok, his potassium is of course low. But Dr. Su decided to back down on the diuretic's, so he is getting lasix 2X daily, and the potassium 1X daily. That is 3 times of taking med's a day, instead of 8 times!

Dr. Su told us we weren't "out of the woods" yet, but that this is a good step forward. So we'll go back on monday for another x-ray and blood test.

I'm still really scared, and very reluctant to get my hopes up. But the fact that Jack is happy, and acting relatively normal is enough to keep me sane.

PS. Baby Grant went home!! It was a good weekend for everyone.

To Laugh at.

A step forward-

Dr. Su told me to not give Jack any of his diuretic's today. So we spent the day making sure Jack was eating and drinking, which he has, a little bit, and is holding it down. He is seeming much better, more talkative, and more active.

Though I am happy to not be giving him his terrible med's every 3 hours, I'm nervous about the pleural effusion returning due to our decision to not give him any diuretics. But he is still sunken-eyed, and not seeming puffy, so I doubt he is filling up with fluid. It's really scary though, to have these decisions in your hands.

We'll see what happens tomorrow, and hopefully Monday will bring good news.

I'm not sure if i'm gonna make it.

We were discharged today. He was walking around in the hospital, playing, eating, drinking and acting just fine. We were sent home with potassium because he's low.

The minute we get home, he throws up. He slumped over, turns pale and nauseated, and threw up again after I tried to give him potassium (to help) and now he is back on the floor curled up. He can barely sit up or walk without looking like he may pass out. He can't breath without sighing, and keeps telling me his tummy hurts.

So, Dr. Su is letting me call him if Jack seems like he's getting dehydrated. But we'll be watching him closely.

Today.

So, last night Jack ate dinner and held it down. Then I gave him his med's. I didn't want to give him the enalapril because that is the new variable in his regimine that occured along with the vomiting. But I had to give it. So I did.

3am rolled around and Jack woke up asking for apple juice. I gave it to him and as soon as it hit his stomach he was telling me his tummy hurt. He threw it up about 30 minutes later.


This morning he ate his breakfast well. I gave him his med's, all BUT the enalapril. I got the go ahead from his Cardiologist to stop that med and see what happens. Jack's x-ray looked really good and his blood showed low potassium. (big surprise)

We are planning on hanging here for another day to make sure he does well without the enalapril and will eat, and will still stay dry enough to prevent the effusion.

He ate some lunch and POOPED after, (yay) so things are looking good right now. . . but it changes every hour.

On a lighter note- look at my ADORABLE new neice: http://www.kellsbelles.blogspot.com/

Re-admitted.

Yes.

Not kidding.

Jack wouldn't stop throwing up all night and was running a fever and getting no med's, no water. We called at 2am and they said to just bring him in for his appt. at 8am or we'd be going to the ER. We came in, got labs and x-ray, then they were worried about his fever, and being dehydrated, so they admitted us.

Good news: It's not a pleural effusion. The x-ray was GORGEOUS and worthy of framing and hanging over the mantle. His blood labs came back pretty good, electrolytes were higer than when we left. Potassium good. Sodium OK. But he did still seem dry. TOO dry. But, he satted in the 80's off his O2, so he isn't on supplemental oxygen, and is tube-free.

Bad news: Back here on the surgical floor with needles, cords, labs, tests, vitals and IV's. He isn't too happy. We have to stay overnight for sure to get the culture back to see if he has some sort of viral infection, or respitory infection. We are in isolation in the "Crappy" end of the surgical floor. In a small room.

So, we wait. He has had some gatorade and crackers that he's kept down. Hopefully that is progress.

We are trying to start a record of most admissions to
primary's in a month.

Home again, home again, jiggity jig.

We are home. Jack's very happy to be home. We (as we have each time he's been discharged) went out and got him something new to play with. I got him some Gabba bath toys. And some new movies. He is doing well so far.... we go back to Primary's for an x-ray and blood draw on Wed. Here are some pictures from our last visit.

Jack wearing his "Lightning McQueen" pull ups. But Pull ups don't hold much fluid. So it was a one time thing.

One of Jack's Automoblox. They are super fun toys.

One of the nurses, doing what they do. Pissing Jack off.

See. He's not too fond of vitals. OR getting his IV or chest tube flushed.

Mommy and Jack in the garden out front. (We almost escaped)

Some flowers in the garden..

Jack in the garden.

I thought the bleeding hearts were appropriate..

Jack, at discharge time, in one of the dinky wagons.

My boy, making it through another week at the hospital.

ALRIGHT FOLKS!

Here we are, again, being discharged. Jack's x-ray looked "perfect" and his blood draw (though the actualy draw was AWFUL) looked good. A little dip in his potassium, so we are going back on Aldactone. So, there's that, lasix, enalapril, diuril and aspirin. Alot of stuff for a 20 lb boy. (That's right, he's lost about 6 lbs.) Good thing- he's only going home on .25 litres of O2, last time it was a whole litre. So that is a good sign.

So if you pray, pray for no more fluid to return, and for Jack's body to accept what has happened to it and not reject it.

Jack's chompin' on Cheeto's right now, so we're off to a good start. He was a little moody, and threw his blanket at his surgeon, the very man who's saved his life.... but I'd be moody if I'd been here as long as him, being poked and prodded as much as he has. I'm sure Kouretas will understand.

Stay tuned. Please let this be it. PLEASE.

Happy Mother's Day

So, we will be staying here today and tonight. His electrolytes need to get better. I'm happy staying here because I'm not exactly prepared to go home...and wonder if we'll be coming back.

Jack IS doing well- he's been eating little by little, playing in the playroom, climbing up and down his bed and talking non-stop. So those are all good signs.

Today more than any mother's day I realize WHY there is an actualy day dedicated to mother's. Jack has wanted his mommy throughout this entire process, and his mommy is the best one to give him med's, the best choice to do vitals, and the one he wants to have lie down with him to watch shows. So I know that I am important to him, and I'm happy to be his mom. I'll do just about anything for him. Like, for example.. the first day we got here, Jack threw up in my hands. There was alot of commotion, we were getting him admitted, and putting in his IV and scheduling his chest tube insertion in the PICU, and Josh asked me to go eat something because I was about to pass out. So I piled some carnita's on my plate at the Rainbow Cafe and scooped them up in my hands and started chowing down. It wasn't till the 3rd or 4th bite, that I remembered I had forgotten to wash my hands.

THAT's how much I love him.

Maybe we will, Maybe we won't.

So today was a much better day, in that he wasn't one color and speechless. Today he has felt alot better, talking ALOT, and kind won't stop...

He spent some time with Aunt Jill and Uncle Lindsay- sadly, he threw up his mac'n'cheese with them. But it wasn't all that gross because due to Jack's inability to CHEW his food, it looked alot like mac'n'cheese straight from the pot.

We managed to get some mashed potatoes, noodles and apples sauce down. Just a little bit. But he kept it down, and his med's down. Which is an achievement. If he does this well overnight and tomorrow, we may go home. But I'm being super extra cautious, and if we need to stay another night we will.

Stay tuned.

Oh and I only said "if anyone is still following this" because we are reliving the same thing over and over. I'd get bored with it.

"It's WORKING!!"

Jack finally pooped. Thank heavens. It was a horrible and glorious moment simultaneously.

This morning they pulled his chest tube. It went well. He definitely felt alot better. AND, once he pooped and threw up at the same time... he felt REALLY GOOD, and was just ecstatic. He celebrated by yelling "It's working!!!"

The plan is to get him on a specific medicine regimine and make sure that the diuretic's are working properly. He won't be sent home on potassium (YES!) because the Enalapril, which is a BP medicine, helps with potassium. So we are going to wait today out andmake sure everything is good.

He is feeling MUCH MUCH better than yesterday, his color is back, he ate some "pirate cheetos" and has been drinking his Gatorade. So his is much more himself...

We'll let you know if there are anymore updates. (if anyone is still even following this story..)

another day.

Jack still hasn't pooped. He isn't eating much. After his med's today he ate a little breakfast then threw it all up. I'm hoping SOME of the med's stayed down. His potassium levels are good- so luckily we don't have to deal with the "K" drama of yesterday. We tried mixing up that awful medicine with coke, peanut butter- nothing worked. Luckily his levels are ok enough with the new bloodporessure medication. His sats are kind of low today and they upped his O2 to .5 litres again.

Today is mainly about getting everything inside of him working so he feels functional again.

I'll post again later. Today marks a month since his surgery date. Who knew...we'd still be here.

"Let's see if it happens again.."

Basically.

So they decided that the echo shows great heart function and surgically, he is "stellar". But there is a little bit of narrowing in the PA's that could be causing high pressures, that in turn, cause the body to leak fluid, causing the pleural effusions. But they don't want to go in and cath him because for one, it's too soon to tell, and two, he's only a month out from surgery. So we are going to keep treating him with diuretic's, which he seems to be responding to really well because he hasn't had much output thorough his chest tube in the last 24 hours. They want to be careful this time so they are going to wait a few days to pull the chest tube, and in the meantime change all his diuretic's to oral (they are being given thru IV right now) and see how his body does with the oral intake, and then send us home.

That's when Josh and I get to be paranoid and scared everytime we see jack cough, get puffy-eyed, or curl up in a ball on the floor. I will really just be waiting for all the signs. I asked if we could get x-rays every day.... they said he'll for sure get one at the follow-up appt, then if they decrease his diuretics then we'll have another.

The good news, is that this isn't AS MUCH fluid. Pretty dang close though... and Jack is only on .25 litres of O2 and satting above 80. Even WITH the chest tube in. So that is encouraging. It is also really good news that his heart function is good, and that the Fontan is working the way it should. They said that the pressures through the fenestration looked good- and that the flow was doing what it was supposed to.

So thre you go.

We'll be here for a little bit. But for good reason.

no word yet

I know everyone is wondering about the echo. ME TOO.

Todays events are minimal, and last night there was ZERO sleeping. So I've been trying to snag naps all day. Jack had his echo at about 11:30 and was quite drunk after. The Dr. came in to listen to him and he asked "How was your echo?" and Jack said "ECHO! ECHO! ECHO!"

It was funny. So since then we've just been waiting to hear from either Kouretas, Su, Bonnie, Linda, Kaza, Wilson... SOMEONE.... but no word yet. So our nurse just paged the team to see if they have any news on the echo. We'll see.

(addition, made an hour later)

So, they've seen the echo. They had a meeting at 5pm. And now- we may not hear from them till tomorrow morning. Someone MAY come talk to me, if they feel like it, I guess, but I won't really hear "the plan" until rounds tomorrow morning. Which is usually around the time we finally fall asleep.

Brand, spanking new Chest Tube.

This is the image I saw first thing, this morning. Maybe it's not as devastating to you- but to me it says "Another week at the hospital with poking and prodding and medicating and crappy sleeping and issues with pooing and sad unhappy steps backward."

It's not even funny- but I could probably do this procedure myself. All I need at home is a pusle oximeter, a chest x-ray machine, and a chest tube kit. Then, access to drugs- like ketamine, morphine, and versed. Annie put in Jack's chest tube under the supervision of Bonnie. She did a great job- I say that because it's been 4 hours and 600+ that has come out. So, I believe that quick discharge is due to her tube placement.

Jack is doing as well as a kid that is BACK in the hospital for the third time, with a third chest tube can be. His sats are really good. Upper 80's, as opposed to the low 70's they were this morning. I've seen both x-ray's and they have greatly improved since the chest tube was put in.

Everyone's questions are the same: Why does this keep happening?

Well- there isn't an exact answer, excpet that pleural effusions or common, but having them over and over again definitely draws attention and they want to find out why it is reoccuring. The cardiologist says he can't make any assumptions until he sees an echo, which we should get tomorrow. The surgeon doesn't believe it's chylo and thinks it has nothing to do with his diet, but thinks that he may have to have a cath to close the fenestration (which is supposed to prevent pleural effusions...) So there are alot of theories and opinions floating around and it is way to soon to give anyone (including us) information on "what we are going to do about this."

Just know, that the fluid is being drained. Jack can breath better. He's not too comfy with a chest tube in, and says his tummy hurts... but he doesn't have 680cc's of fluid invading his right lung's space.

Sad News, Sad Jack

I could type it all out, but you could just read the old post and get the same idea. Jack has another pleural effusion. Same side. Same symptoms. Last night he was breathing short and his face was puffy. He put on a happy face because he knows if he tells us he hurts or is sick we take him up here. So this morning we got an x-ray, and I stuck back by the image read-out so I could sneak a look before the Dr.s saw it, and it was quite obvious he has another massive effusion. As soon as Jack realized we were at the hospital to fix him- he started telling us his tummy hurt, and was throwing up and acting more restless.

We are currently on the Surgical floor awaiting his procedure to put in another chest tube. It's heart breaking to watch him relive this nightmare over and over.

I'll post again after we visit the PICU.

Happy News, Happy Jack

So we went on up to Primary's for Jack's labs today, and we decided to visit Alli, Kyle and Grant FIRST- as poking Jack with a needle and squeezing out his blood tends to make him want to get OUT of the hospital....So we revisited the PICU and got some encouraging news about Grant and his improved heart function. We saw a few of the nurses that helped us out while we were in there and then we got Jack's blood drawn. He did a really good job. The levels came back good, No more potassium issues. We are dropping the doses on the other two med's he is on, and he will be staying on O2 for sure until our visit to Dr. Su on May 18th.

So because of our unbelievable gratitude and joy for Jack's return to home, he has been somewhat spoiled... but you can't help it when you imagine where he was three weeks ago and you see his hands and feet looking like pin cushions. So Josh got Jack his first car- he has wanted one for awhile. He usually picks the pink one... ... but this one was RED like Lightning McQueen. Jack was THRILLED to take it outside, and other than his inability to steer correctly, he is a really good driver. Please take note of his obvious rapture in this first picture..

A "normal" post

Jack and I went with my cousin Liz to the Tulip Festival. Liz was kind enough to purchase our tickets and showed plenty of patience and understanding for my child that was on a 10ft "leash". Her adorable kids scampered in and out of tulips like a scene from a movie and we had alot of fun, despite the chaos, and the rain.

Thanks Liz.