Hypoplastic Left Heart Babies

2011-07-21T07:06:00.000-07:00

When we were first told about Jack's condition at 20 weeks along in my pregnancy, we told our parents the news and spread the blanket of the fearful unknown over my family and loved ones. My Father, having already spent years in Cardiology due to his (unrelated) heart problem, called up his long-time friend and cardiologist, Dr. Don Doty. Dr. Doty told my dad right off the bat that when we went to Primary Children's we were to request Dr. John Hawkins, because "he was the best." Dr. Doty had actually trained under Dr. Norwood- of the "Norwood Procedure," so his recommendations were taken seriously. We were privileged to meet Dr. Hawkins and have him perform the first (and the most important) surgery on Jack. The first stage of the Norwood is high risk, and only 70% survive. Dr. Hawkins was there when Jack was 5lbs 14oz, with his incredible hands, fixing Jack's broken heart. We will ALWAYS have a special place in our heart for him, and will be forever grateful.

John Alan Hawkins, MD 1955 ~ 2011 John Alan Hawkins MD, 55, beloved husband, father, son, brother, and friend passed away on May 15, 2011 in his home surrounded by his loved ones. He fought a courageous 25 month battle with pancreatic cancer. He was born June 29, 1955 in Wichita, Kansas to Lois Price and John Powell Hawkins. John married Mary Jennifer Coleman, his soul mate and perfect companion on June 29, 1982 in Salt Lake City, Utah. He and Jenny were blessed with four wonderful children, Sarah Jane, Anne Elizabeth, John Sherman, and Mary Jessica. John graduated from the University of Kansas in 1977 Phi Beta Kappa with a degree in biochemistry. He earned his MD from the University of Kansas in 1980 where he was elected into Alpha Omega Alpha. He completed his general surgery residency at the University of Utah in 1986 and cardiothoracic trainings in 1989. He also finished a fellowship at Cincinnati Children's Hospital in pediatric cardiovascular surgery. John was on staff at Primary Children's Medical Center from 1991 until his diagnosis in April 2009. During his time at PCMC he served as the Chief of the Division of Pediatric Cardiothoracic Surgery from 1999 until 2009 and Chief of Cardiothoracic surgery at the University of Utah Medical Center from 2001 until 2009. Throughout his practice John saved the lives of countless children, served on numerous editorial boards, and held offices in multiple national organizations. John was a gifted, compassionate surgeon, a devoted husband and father, and a talented craftsman, luthier, and musician. He was a man of great humility and unwavering integrity, who was an example to us all. He will be deeply missed. John is survived by his loving wife Jenny, of nearly 29 years, and their four children, Sarah Jane (Brian Michaelson), Anne Elizabeth, John Sherman, and Mary Jessica. He is also survived by his mother Lois Price of Wichita, Kansas, brother David (Judy) of Wichita, Kansas, sister Laura of Leawood, Kansas, Mother in-law Jane Coleman, brothers in-law Dr. Michael Coleman (Anne) and Dr. Don Coleman (Margie), numerous nieces and nephews, and countless friends. John was preceded in death by his father John Powell Hawkins and father in-law Dr. Sherman Coleman. Deepest gratitude to all the doctors, nurses, and staff at Huntsman Cancer Institute and Rocky Mountain Hospice for their exceptional and compassionate care during this difficult time. At John's request a private family memorial was held. In lieu of flowers John and his family have requested contributions to: The Heart Center at Primary Children's Medical Center (100 North Mario Capecchi Drive, Salt Lake City, UT 84113), Huntsman Cancer Institute (500 Huntsman Way, Salt Lake City, Utah 84108), Camp Hawkins (1469 Wilton Way, Salt Lake City, Utah 84108 or camphawkins.org ), Coaches vs. Cancer Believe Campaign (4421 S. Williamson Lane, Spokane, Washington, 99223), or a charity of your choice. Arrangements entrusted to Starks Funeral Parlor. Online condolences may be offered to the family at www.starksfuneral.com

Published in Deseret News on May 22, 2011

Holly Saunders McKell, a Heart Hero.

2011-04-09T16:08:00.000-07:00

Holly Saunders McKell was born with one valve and one artery- and due to complications with her liver and lungs, her heart was weak and she needed a donor heart, lung and liver. With such odds against her, she chose to live a wonderful life knowing her days were numbered. Holly returned to her Heavenly Father on Saturday, April 2, 2011. I see her as a hero and know that she has been an example to all CHD survivors. Our thoughts and prayers go to her family and we send our love.

IHH FUNDRAISER- Chick-Fil-A

2011-01-31T16:20:00.001-08:00

Tuesday, February 8th at the SOUTH JORDAN CHICK-FIL-A

Come and help raise money and awareness for CHD's, by eating out at Chick-Fil-A. Partial funds from everything spent between 7pm-9pm will be donated to Intermountain Healing Hearts. Please help us support a GREAT group that helps all of us heart families out there!

SOS/SSI

2011-01-18T11:53:00.001-08:00

After lots and lots and lots of work, I think we have actually gotten Jack approved for SSI. Dealing with government agencies is something I think people should actually get paid to do. I think there should be people out there that know the ins and outs of these facilities, able to find the fastest track to getting things done, the right numbers to call (and know the RIGHT times of the day and week to call them...) and know where all the offices are, suite numbers, hours of operation and the quickest way to get to them.

I have got a good hold on Utah, state agencies are so tricky, but I have spent years figuring it out. I know what to say when starting a "chat" with the Dept of Workforce Services. I know they need my case number, social security number, phone number and address. THAT'S RIGHT- THEY DON'T NEED MY NAME. It is an arduous feat to maintain our benefits through the state. It is especially complicated because of Josh's work. We are in monthly contact with them faxing in reports of income and changes. It is a lot of work, and if there WERE someone who knew the ins and outs then I would hire them to maintain Medicaid for Jack. Then I would hire them to maintain our federal benefits with Social Security.

I'm not even sure how it is going to work, and now that Jack's surgeries are all complete, the funds will just be used to keep him alive and thriving (clothes, food, education.) But being that the SSI fund is quickly depleting, who knows how long he will have it.

My advice to other parents out there with children that have CHD's or any other medical need, do this SOONER than LATER. Honestly this could have saved lots of financial woe's that fell upon me and my husband over the last 5 years and possibly have changed our situation for the better. I'm grateful for everything, the insurance we DID have, while we had it, the patient accounting department's of the hospitals, and of course the fact that Jack is doing well. But not knowing what I was getting into with my first born has certainly taken its toll, and I would like to help other parents out there get better control of their lives when the blessing of high maintenance children come into their lives.

Once the SSI program is clearer to me, I'll share more. But they didn't tell me much, other than we were approved. So I don't even know what I'm in for (again.) Stay tuned.

WOO!

2010-10-18T13:47:00.000-07:00

JACK

MEDICAID!!

(Yay!)

PARENTING 101

2010-09-09T11:29:00.000-07:00

In the last three days, Jack has hit a ton of kids, and BIT one of them. He knows it's wrong, he knows it hurts others and he still acts on his emotions. Being an only child, he doesn't understand that not everything is HIS, and you must SHARE and other kids aren't competition- they are friends.

I try to talk with him, and be calm. I've tried yelling, to scare it out of him. I've tried taking things away. But it is still happening.

If there is ANYONE out there with a similar problem, or who has had this problem in the past and overcome it, please- pretty please, share your secret. I'll take any advice. I hate being the mom the teacher has to pull aside to tell her her son had a "bad day" and "made some mistakes."

Good memories of rough times..

2010-05-10T20:33:00.001-07:00

I am trying to organize the first 5 years of Jack's life in a sort of journal-type-book-thing, that he can perhaps take with him to school for show and tell to help explain why he is so dang special. But I have sadly been unable to track down some important pictures involving the Glenn, his second surgery. However, I came across this video, and the most amazing part of this is that he is only FOUR days out of heart surgery. His spirit shows through so much, and his desire to just be happy and have fun is still with him. But even though he is hooked up to things and has a huge incision on his chest, this video makes me smile.

Assistance, please.

2010-04-30T12:44:00.000-07:00

For those of you with heart babies, you know that the expenses are ridiculous, to say the least. But while you are in the middle of surgeries and frequent hospital visits, all you can tell yourself is "it's all worth it."

We are on independent plans with Regence Blue Cross Blue Shield. My husband is self-employed, and our health insurance premium is $1200 a month. Being that we have completed our three heart surgeries, and Jack shouldn't have as many hospital visits in the future, we can't afford that 1200/mon anymore.

Does anyone out there have their heart baby covered by the State? And if so, how did you go about doing it, or do you have any tips or suggestions for me? I'm currently trying to get Jack covered on his own plan, separate from Josh and I so we can somehow save some money.

But I am about at a loss,

So suggestions would be graciously accepted.

Thank you ~

Jack's Make A Wish

2010-04-21T12:12:00.000-07:00

MAW posted Jack's story on their blog.

You can view it here:

http://utah.wish.org/2010/04/16/jacks-walt-disney-world®-resort-wish/

DISNEYWORLD..... the first and last time we'll visit ;)

2010-03-31T21:06:00.000-07:00

Honestly, who knows. But we were so spoiled on this trip by Make A Wish, that if we were to ever return, Jack would ask "why do we have to wait in lines?" or "why aren't you buying me every toy I ask for?"

It was truly incredible. I posted each day on my family blog, so if you are interested in living a week in Florida vicariously through us, please click away.

Here's the Deal.

2010-02-02T09:00:00.001-08:00

As of 4 hours ago we were getting ready to hop a plane tomorrow morning and head to Florida for Jack's Make A Wish trip. However- a chain of events led us to canceling the trip, upping Jack's med's substantially, and staying home. Here's a summary/timeline of the last week:

We finished Jack's antibiotic's that he was on for the Strep throat we discovered 2 weeks ago
Jack started getting sick again one week ago, cough, fever, chills
We took Jack in on friday and the dr. saw no signs of a bacterial infection, and the strep test was negative
Dr. asked us to keep him updated on Jack's condition over the weekend
By Monday (today), Jack had not improved and the Dr. called us to bring him in
Dr. said we should get a strep test just to rule it out, but it came up positive
Dr. also said he was concerned about Jack's lungs, as he could hear something on the right side (Jack's "bad" side) and suggested we go to Primary's for an x-ray
Primary's did the x-ray, I tried to read it, find someone to read it, couldn't, and we went home to wait for the results
On the way, a cardiologist called to tell us there was some build up that could possibly be pulmonary edema, and that there was in fact a small pleural effusion

So we are now back up to 3X daily lasix, 1X daily aldactone, and his new antibiotic for the returning strep throat.

There is some good news:

Jack is home, we aren't in the hospital with another chest tube
It's raining cats and dogs in Florida
We can watch the season premiere of LOST at the same time everyone else does
Make A Wish is allowing us to reschedule his trip

It's incredible that Make A Wish is so accommodating, I mean we called about 12 hours before our departure time and told them the whole thing is off. I'm so glad that they are understanding and allowing us to try again.

The hardest part will be explaining to Jack tomorrow, why we aren't on our way to Disneyworld.

Thank you for all those that listened when I needed to talk to you and thank you to Make A Wish. Today sucked. But Jack is here and in good spirits, which is all that really matters.

Westland Elementary School

2010-01-29T15:28:00.000-08:00

A couple of weeks ago we found out that Jack's Make-A-Wish was being sponsored by a local elementary school. They had seen a picture of Jack, knew a little bit about him, and learned his favorite things. For weeks the school raised money, based only on the flyer posted around the school. The administration asked if we could come to an assembly where they could present the check, and the kids could all meet Jack.

I was asked to speak a little bit about Jack's story. I did my best to summarize our eternity that has occurred over the past 4 and a half years, and make it so elementary school students would stay interested. Jack just had to be there. When he walked through the doors it was though royalty had entered Westland. The student council shook his hands and gave him hugs, and on our way to the Gym all the kids in line would give him "five" and tell him hello. Everyone was crowding around him, asking him questions about Lightning McQueen, and Disneyworld.

Jack was LOVING IT. He would just look into all the eyes of these strangers and smile. It was as though he truly felt gratitude in his heart. (We were particularly proud because he'd had problems with being nice to strangers lately...) He even volunteered to show off his scars, and was very proud of them.

After I spoke, we showed a slideshow of picture from Jack's birth to today, including some of the serious shots of him right after surgery, and the kids' response was so genuine and heartfelt, you could feel it in the whole room.

As a whole they collected over $1500 to help send our family to Disneyworld. It was so humbling to think of all these kids that were so happy that they were a part of this. It really makes you think about how special little kids are, and how they can be examples to us. There were a few children that brought gifts for Jack, out of the goodness of their hearts; they bought him CARS toys, Oreo's, Mater trucks, coloring books.... it was incredible. I'm so glad we captured all of these videos, (thanks to Nat for the FLIP and Mom for the filming..) because later on in life he'll be able to see how special he was to all these little kids at Westland Elementary school.

We hope that after we go on our trip, we can return to Westland to share with them the fun that we had, BECAUSE of them- and keep them updated on Jack's condition. I'm currently working on gifts for all 616 students....

Paul Cardall's A CELEBRATION OF LIFE

2010-01-15T09:56:00.000-08:00

Announcing Paul Cardall Live in Concert. . . . .A CELBRATION OF LIFE . . . February 15, 2010 at Abravenal Hall at 7:30 p.m. with guests: Peter Breinholt, Charley Jenkins, Sam Payne, Mindy Gledhill, Ryan Tilby, and Steven Sharp Nelson. Tickets go on sale. . .November 2, 2009 at 10:00 a.m. MDT through ARTIX either on-line or by phone at 801-355-2787. Tickets range from $16-$20 plus the ARTIX service fee.

Intermountain Healing Hearts is a Sponsor of this amazing concert, since Paul is one of our Adult members. . . how better way than to support him? Intermountain Healing Hearts will be helping with the Silent Auction, since that portion will be used exclusively for Scholarships extended to families dealing with Heart Disease. If you are interested in being on the Silent Auction Committee, please contact carolynquigley@intermountainhealinghearts.org as it will require a lot of hands helping.

Life is Beautiful.

2009-10-04T20:10:00.001-07:00

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-

2009-09-29T11:39:00.000-07:00

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

2009-08-10T15:11:00.000-07:00

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..

2009-07-29T08:08:00.000-07:00

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?

2009-06-17T19:03:00.000-07:00

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

2009-05-30T09:43:00.001-07:00

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.

2009-05-26T19:10:00.000-07:00

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.

Third times the charm

2009-05-07T10:04:00.000-07:00

So we are back here again, with another pleural effusion. It drained about 750 cc's so far, it's been two days. They don't know why it keeps reoccuring. They have decided to one more time treat it with diuretic's. We will take it slow with pulling the chest tube and sending us home, to make sure it doesn't start to happen again. But really, it it alot like last time we were here. So we'll be sure to get alot of x-ray's while we are home. If it DOEShappen again, they may cath him and open his PA's a little to lessen the pressure going through, which should help prevent fluid from being created.

That's the short story- the play-by-play is on this blog.

We will be here for at least 4 more days. We'll see.

the more UPBEAT blog..

2009-05-04T11:42:00.001-07:00

I'm currently updating two blogs. Until May 18th, I'll leave this one alone. So check here if you are so sweet to genuinely care about what is going on with us..

www.lisascrazydreams.blogspot.com

Post-Op, made it through.

2009-04-29T13:59:00.000-07:00

Jack is still a little weary each time we go to the hospital, thinking that we may be strapping him down to a bed again. Luckily, we didn't this time. His x-ray was crystal clear. We did draw some blood and it looks like he is low on potassium and sodium (despite ALL the Gatorade he has been pounding.) So we were given prescription for the same potassium medication we tried to give him in the hospital, that he threw up. So I was a bit skeptical about taking it home. But we bought some wild cherry flavoring to go with it. To help you understand what a difficulty this med is, imagine condensing down some super nasty sea water and try feeding a tablespoon of it to your 3-year old.

Why is potassium so crucial? ...you may ask...

Well, if you have watched Boston Legal, Law and Order or have some really bad friends, you are familiar with lethal injection. Basically, what they are injecting is POTASSIUM, to STOP the heart. And counteractively, if you have too LITTLE potassium, it can have the same effect.

So, the "K" is kind of serious.

On a lighter note, we dropped one of the diuretics. That is good, because that particular one made him dizzy. And, we dropped a half-litre of O2. So we are back to the .5 that we were on before. The Cardiologist we saw (who isn't OUR normal cardiologist..) said that Jack's saturations were "ok". They were in the 74-77 range off of the O2, which is ok, but not what they want right now. So we'll stay on the O2 till our next visit, which is May 18th, when we see OUR cardiologist.

Also, if you remember, there is a hole in Jack's heart called a "fenestration" that they sewed to his fontan, that is sort of a "pop-off" for the new pressure flowing through his heart. Sometimes the fenestration closes on its own, sometimes a cath is needed to close it. Jack's heart is CHOOSING to pump the blood through the fenestration, and not the fontan. (The blood flows through the fontan, but the heart is PUMPING it through the hole, instead of PUMPING it through the new valve.) This isn't necessarily a bad thing...we'll just have to see what happens. And I'll get more answers from JACK'S Dr's.

So, all in all, he is doing well. Clear x-rays are wonderful. A kid that eats and drinks and doesn't have as sunken of eyes is wonderful.

We go back to Primary's on Monday for another blood draw. We'll see how that goes.

Another little scare..

2009-04-27T16:19:00.000-07:00

So this morning was somewhat a repeat of last monday, Jack didn't want to do much, threw up his med's, was breathing short, and kept curling up in a ball on the floor. We took him to Primary's for an x-ray, and LUCKILY it came up clear. The NP said he may be low on electrolytes, and that is why he is acting this way. So we are trying to pump the Gatorade into him. He did eat a little lunch, had his med's and then ate some spaghetti and meatballs. He's on his second nap of the day, and it's 5:00. I'm hoping this is all part of the recovery process. And not part of the getting worse process.

I can't wait till Christmas.

The Fontan

2009-04-26T18:53:00.000-07:00

For the sake of my gadget to the right that has the first two stages of surgeries, I wanted to provide a summarized version of the Fontan to complete the series.

Jack's Norwood was on April 8th, 2009. He was 3 years and about 4 months old. He weighed 26 pounds which was BARELY enough to get him into the operating room. Dr. Kouretas, Jack's surgeon, explained that he would most likely be able to fit the 18 gauge into Jack's chest, and not the 20, which is sufficient to last him through adulthood. However, Jack coming from small parents, and being pretty small

himself, would most likely not need an upgrade.

Jack's surgery lasted about 6-7 hours, mainly because of the scar tissue the surgeons had to work through. Once completed, Jack's inferior vena cava was attached to the pulmonary artery to help oxygenate more blood and improve the blood flow to the lower body, and alleviate the work that his half-heart is having to do to make up for the left.

Once out of surgery, Jack spent 5 days in the PICU. He was doing well his second day, ate a little drank a little, and could respond to things we said. They took all three chest tubes out by day 4. But over the next couple days he started to seem more uncomforta

ble and more restless. He couldn't hold food down and started coughing as though he wanted

to throw up. After a chest x-ray they discovered fluid building in his right side. So on Easter, they re-inserted a chest tube to help drain the fluid. Initially, 100 cc's came out. Which is really alot. About the size of a tennis ball. Over time, it added up to about 450.

We moved up to the Surgical Floor on Monday and began the process to get discharged. I stayed each night with Jack. Waking up every 4 hours for vitals. On Tuesday they pulled the chest tube and we were discharged on Wednesday. Jack went home on Lasix, Aldactone, and Loratab. They upped his daily dose of baby asprin to 1 whole asprin.

We went home with O2, sadly, and they had us on .5 litres. So Jack was tethered to a machine that would suck the oxygen out of the room, compress it, and release it through his tubing. He did well at home. He was excited to be there. But on Monday morning, 5 days after getting home, he woke up and wasn't the same. He didn't want to eat, or move, or talk and he threw up his med's. We took him into Primary's and found his chest x-ray to be VERY disturbing.

Jack had a massive pleural effusion on his right side. (Left: Jack's effusion is on the left, and the right image shows x-ray after tube was insterted. Blue circle is around his lung.) So we immediately readmitted him to the PICU and they inserted another chest tube. Right away, 450 cc's came out. It was unbelievable. He spent that night in the PICU and the next morning we moved up to the floor.

Our room was much nicer this time..which was good because our stay was longer. We spent 6 days on the floor. His tube drainage slowed appropriately. Jack's chest tube ended up draining 800 cc's. His potassium levels were dangerously low- so they tried to give him that medication but it was AWFUL. So they upped his Aldactone to counteract the Lasix, which takes potassium out of the body. It helped.

We were discharged on Saturday (Josh's birthday..) and he came home much happier and more active than the first time. He's on more diuretics to help kep fluid draining, and he is on one full litre of O2. He's been home for a whole day and is acting like his normal self.

(I'll update this after post-op)

De Ja Vu

2009-04-25T16:33:00.000-07:00

So here we are at home again. It was very hard to leave the Hicken's behind, let alone in the PICU, but we need to get Jack on the road to recovery before he thinks he lives at Primary's.

This morning the NP asked if he'd like to go home and he said "No! I wanna stay at the hop-sital." So...yeah. Time to get out of there.

He is doing well (just like the last time we came home..) but he is on more O2, and more diuretic's to help prevent another effusion. He was very pleased to be home, and even after his nap, the first thing he said when he woke up was "Mommy! We're home!" As though he didn't believe it in the first place.

Right now he is playing with Dominic, who he was very excited to see.

We go back to Primary's on wednesday for the x-ray (another chance to get a bouncy ball. We now have 12.) That x-ray will hopefully tell us whether we are past this. Or it WILL tell us we are past this. I'm looking forward to it because I wanna make sure he is ok for good- but also because I get to visit my friends again :). Keep sending your prayers to Grant. (Save a few for us, too.)

Baby Grant needs prayers...

2009-04-24T22:25:00.000-07:00

Please pray for Grant, he and his parents had a hard night.

News

2009-04-24T16:16:00.000-07:00

I'm sorry- but is he not the cutest. How many kids smile this big when they're in the hospital.

Chest tube was removed this morning. Already he is moving around better and eating better. We actually SLEPT last night! (Between vitals and blood draws and x-rays) But this mornings x-ray went very well, and Jack was VERY cooperative, he held his arms out before they even asked and was so good. (The morphine is helping with his friendliness...)
So now that the tube is removed, depending on tomorrow's x-ray, we could be discharged tomorrow. A great birthday present for Josh..

I'm of course nervous, but he seems to be doing really well, and in addition to the pleural effusion, has had more time to heal from surgery. We'll still go home on O2, but we'll come back on wednesday to see how he is doing.

Thank you so much for all the prayers and kind words. And those friends I don't see often, I love you guys for even thinking of us. I'll let you know how he does today- and what the word is for tomorrow.
HERE WE GO!!

Highlights

2009-04-23T15:11:00.000-07:00

I'm very tired. So here's a summarized version of the last 24 hours.

-Jack didn't sleep last night. He was in pain and at 2am I had them give him morphine, which usually knocks him out, but this time cheered him right up, and we watched all the Gabba's, CARS, Toy Story and Madagascar.
-By then it was 5am and we did x-ray and labs. (only one poke this time)
-Fell asleep by 7am, woke up at 8 for vitals and rounds.
-slept till 10am.
- woke up for some chicken nuggets, didn't eat a whole lot.
-very cheerful in the morning
-took a nice nap from 12:30-2:30
-was woken up for vitals and meds
-from that point on, very very irritable and acting like he was hurting
-had a hard time communicating what the problem was
-I caved and gave him more morphine
-now he is playing GI Joe with Kyle, Grant's dad.

It's hard to say what could be causing him so much discomfort, because it could obviously be the chest tube, or the fact that he hasn't pooped since Monday, or that his potassium is VERY low (again) and he won't take the medication for it, and could be cramping up.

Surgeons and NP decided against the Chylo diagnosis, since his chest tube hasn't had much output in the last day. So we are going to leave it in another day, then take it out, and stay here a day or two to see if it accumulates again.

That's all for now. I'm hoping he sleeps tonight or I may lose my mind. I wish I could go home and have Josh stay, but he wants me. What mother can say no.

The Problem

2009-04-21T11:31:00.001-07:00

If you were to look up "Pleural Effusion".... this is what it would look like.

Image on right- BEFORE chest tube, image on left- AFTER chest tube.

Blue circle is around his poor lung that had no space to expand, giving him little room to breathe.

He is feeling much better, with those 700cc's of fluid out of his chest.

Quotes regarding x-ray-

"If you threw a dart at that image you couldn't HELP but hit the effusion!" --cardio surgeon

"THAT is IMPRESSIVE!" --PICU nurse

"It's HUGE." --NP

"A Janitor could look at that and say that's alot of fluid.." --Dr. Stevens

Just Kidding,

2009-04-20T21:08:00.000-07:00

We are back in the PICU. This morning Jack wasn't himself. Even the "new" himself. Both Josh and I knew something wasn't right. He wasn't getting out of bed, didn't want to walk around or play, didn't want to eat, and was coughing and gagging like he needed to throw up. These are ALL symptoms that he had the day before we put his last chest tube in. So we went up to primary's and lo, he had a MASSIVE pleural effusion on his right side again. It was so big that our nurse Linda didn't even break it to us slowly. She came out from looking at the x-ray with BIG eyes and said "HUGE."

So we admitted him into the PICU and they put in another chest tube, just like they did on Easter morning. This time, however, instead of the 'amazing' 100 cc's that came out on Easter- FOUR HUNDRED AND FIFTY cc's came flooding out of Jack. Poor thing. His lung was SO compressed he was barely able to breathe. We are now up to 600. So obviously, he is feeling much better. (Aside from the fact that he has the chest tube curled up in his chest..)

After that procedure he fell asleep and has been sleeping for about 4 hours. He is pretty wiped out. They have him on more diuretic's, morphine for pain, and about 2 litres of O2. His sat's are just ok, but should raise as the fluid drains. His blood tests came back showing good, protein, electrolyte and potassium levels, so that is very reassuring. Although with the new diuretic's his electrolyte level is going to be shot down again.

We are home- to get a good rest for tomorrow. We will most likely move up to the floor and wait for the chest tube to do its work up there. It's kind of like last Sunday all over again.

This is very common with the Fontan. They see it all the time. Sometimes it happens 3 times. We are hoping it won't of course, but to put peoples minds at ease (particularly other heart mom's who are awaiting the Fontan..) this is a common occurence after this particular surgery. The body is getting used to the NEW OBJECT that has been plugged in to it and it's "weeping" all this fluid as it does so.

So yes, it is a huge bummer. But Jack was hurting pretty bad there for a bit, and I'm glad we figured it out and took care of it.

We'll keep everyone updated.

Drastic Measures

2009-04-19T20:53:00.000-07:00

According to my Google Analytics, the percentage of visits to this website have gone up 984%.

That is kind of huge.

Thank you, friends and strangers, for following our adventure.

Next post, will be on wednesday, after our post-op visit.

...when we get taken off oxygen.

Go Grant.

2009-04-16T12:56:00.000-07:00

Baby Grant, in about 17 years:

"We made it!"

2009-04-15T17:09:00.000-07:00

Jack exclaimed those words when he woke up to us pulling into our garage. Then as I pulled him out of his carseat he said "I'm so excited I'm home!"

We came home on O2, that I hope to get rid of at our post-op appt. in one week. Jack is on Lasix, Alkadone, Loratab and his usual baby asprin. He is in his room that is well equipped with toys, TV, Dominic, and the continuous flow O2 machine. We are happy to be home, and are so grateful to everyone up at Primary's.

Here are some pictures- I finally got off my camera.

Saying goodbye to the PICU (forever...)

Our nice Nurse Jill, who welcomed us when we got to the PICU, and was there to bid us farewell.

Jack's first trip out of his bed, to see the trains.

His BEAUTIFUL hand...

Sleeping on the frog. Thanks Sam..

Our new room on the surgical floor..

Our third trip to go see trains, Jack could stand.

Jack showing the bunny the trains (thanks Christensens..)

Smiley..

Two women who made Jack possible. Linda and Bonnie, they've known Jack since the beginning.

The tired family- who ALL spent the night in this room, and were awoken by nurses, or IV teams, or radiology all through the night.

Someone who's never been so happy to be strapped into his carseat.

Again- everyone, thank you so much for helping us through this week. It really seemed like forever and at some points I thought it would never end. We will be SO excited to have a healthy boy, that pushed through 3 open heart surgeries like a CHAMP.

He sat up today with his hands on his chest and said "Mom! I"m much better!"

Drunk and happy

2009-04-15T07:07:00.001-07:00

As long as we stay on top of Jack's pain med's, he remains generally happy- and laughs at stupid things. Like Josh, brushing his teeth. Or snow falling outside our window. (That's right- it's snowing.)

The Doc's usually have made their rounds by this time but haven't yet today. I'm hoping to hear them say "Ok, you guys can pack up and go home!" It all depends on his bloodwork, and x-ray, and how they think he is doing. He is crawling all over his bed, with 5 cords attached to him. He is managing just fine.

It's crazy to think that this time a week ago, this whole thing was just getting started and they were barely cutting into him. Now- he has higher O2 levels (even without the supplement O2) he is acting like himself, he is moving around as though his chest weren't just sawed open and wired shut...

It's amazing. Little kid bodies are incredible.

Everyone at the hospital has been outstanding and as weird as it is, it's sad that we'll never be back in the PICU with those wonderful nurses that I trust my child with. Best (and most expensive) babysitters ever.

Hopefully the next post will be about us going home. We'll see.

Almost there

2009-04-14T08:28:00.000-07:00

Kind of a long night- it wasn't bad, just long. Josh went home and I stayed with Jack. He didn't fall asleep till 12:30, then they came in at 1am to give him pain meds. Then he wanted to watch another movie. And at 3am he got more meds, and they took his vitals. At 4:30 he asked for some "pirate cheetos" (Pirate's Booty, thanks Lar) and we munched on those. I fell asleep scratching his back, and at 5 he asked for ANOTHER show. He fell asleep. Then at 5:30, they came in and took some blood (not fun). They took the blood, and and he fell asleep. At 6:00 they came in and said "time for an x-ray" so we loaded up Jack, his 02, and his chest tube tank onto a wheel chair and went back down to the 2nd floor to radiology for an x-ray. Then we came back and fell asleep. At 6:30- the doctors came in and Bonnie said "we're going to take the chest tube out in 20 min".

So-we got about, 10 minutes of sleep.

But better a night of movies than a night of crying and pain filled tossing and turning. He did well.

So the chest tube is out, and we are feeling ALOT more comfortable. Still eating. Bonnie said we will most likely go home tomorrow, unfortunately on oxygen.

If ANYONE has any tips on how to keep a three year-old from tearing his 02 off while he is at home, trying to run around with an oxygen tank....please....share.

Otherwise, he is GREAT, he played with toys last night and even laughed a few times. It's so nice to see he is still in there.

2009-04-13T16:29:00.000-07:00

This may only be fascinating to me....but look at how his fingernails aren't blue anymore. Jack's fingers were ALWAYS purple. I haven't seen his hands look like this.. ever. It's amazing what one little heart surgery can accomplish.

2009-04-13T12:05:00.000-07:00

So, I don't have a picture of him right now- but this is from the Glenn when he was 9 months old- and basically the expression on his face is the same.

So you can get a feel for his emotion.

Can you blame him?

HE ATE CHICKEN NUGGETS!!

2009-04-13T11:47:00.001-07:00

enough said.

now I literally see light..

2009-04-13T10:44:00.001-07:00

We are ON THE SURGICAL FLOOR! (That doesn't sound as good as it is.) This is the floor where the PICU kids go to recover. There is a big window that faces west and it's nice and bright. We are in room 3073, but holding off on visitors for now.

I see the light...

2009-04-13T08:36:00.001-07:00

(Sigh) He ate two cheerio's this morning. I've nevver been so happy to see him eat Cheerio's. Then I offered him some applesauce, he said "yeah" and had about 5 little bites of applesauce. HOO-RAH.

So right now he is sitting, watching Charlie and Lola (thanks mom...) and he seems quite comfortable. He is due for his pain med's, but we are going to hold off till he really needs them. And he is only on 1 litre of O2, which is good, he usually on 3 or above and his sat's are currently in the mid 80's with just the one litre.

So BETTER DAY. Much better. We will be moving up to the floor around noon, and we'll see how he feels about his new location. The chest tube drainage is up to about 180, and still tapering. The tube won't come out till tomorrow....

Thank you again, for prayers and thoughts. They are working...

uppers and downers

2009-04-12T20:34:00.000-07:00

The new chest tube has drained about 170 cc's total now. The fat that the drainage is tapering off, is a good sign. He is VERY weak, and VERY lethargic. He won't eat anything. Not even his asprin. I had to crush it up into his juice. We are lucky he drinks juice. But he hasn't had food for 5 days now, and it's starting to show in his behavior, not to mention his sunken eyes. We are trying to get him to drink pedialyte, and pediasure, so he can get SOME nutrients into his body. Hopefully- when the ches tube comes out, (which probably won't be till tuesday) that things will turn around.

On a lighter note- everyone is being SO generous with the gifts. You are all truly so thoughtful. All the Easter Baskets, and toys, and stuffed creatures, and books, everything is wonderful. Thank you so much for going out of your way.

He is sleeping comfortably right now- and his heart rate is in the 130-140's. We are still using the blow-by for oxygen and he can still have loratab for pain.

Tomorrow we will definitely move to the floor. Despite all the times I've said that- because we had to do some serious fenaggling (sp) to get us another night in the PICU. We like the one-on-one nurses.

Happy Easter

2009-04-12T13:06:00.000-07:00

So this morning was just as bad as yesterday. He couldn't find a comfortable position, and was restless and telling us his tummy hurt. They put the new chest tube in his right side, and TONS AND TONS of fluid came out. It's added up so far to 145 cc's, which is about the volume of a tennis ball. And that has been pressing on his insides. I could tell, after the chest tube went in, he felt some relief, but the nurse made it quite clear that chest tubes are painful, so now he is in pain because of the chest tube. (neverending)

But I am, and I'm sure HE is, relieved that all that fluid has been released. The chest tube will stay in for at least another day while the excess drains. He threw up earlier, after having two sippie cups full of apple juice/water. They tried to give him medication and he just couldn't handle it all. So hopefully this loratab he held down will help him rest. He hasn't slept much today and needs a rest.

They plan on moving us up to the floor today (the recovery unit), but depending on him, and the charge nurse getting around to moving us up there- we could be here another night. So stay tuned.

Thank you Jill- for enduring the "procedure" with us this morning..

2009-04-11T20:39:00.000-07:00

I'm posting only because I had to get out of the PICU because I couldn't watch him anymore. He looks absolutely miserable, and on top of that seems depressed. He is so uncomfortable, and can't sit still for too long, he is restless and doesn't seem to find a comfortable position. It is breaking my heart. I KNOW there is light at the end of this tunnel, but it is impossible for me to see, as long as his oxygen keeps de-satting when we take it off, and as long as he is so lethargic and has no desire to do anything. To eat, talk, get better. Please pray for his spirits, because they are low.

I'm not sure how tonight will go, if we are going to stay or leave.

Tomorrow we'll have the chest x-ray to see how the fluid in his right (it's right, not left) side is doing, and if they will need to put another chest tube in. In which case he'll have no food or drink for 3 hours, and then be sedated again. Poor thing hasn't been in his right mind since we got here.

So I'll let you all know how he is doing tomorrow.

ugh

2009-04-11T11:57:00.000-07:00

ok rough morning.
-angry child
-high heart rate
-02 down
- tummy hurts
-took out ALL chest tubes
-still has fluid in left side, putting pressure on lung
-hope diuretic helps him get rid of the fluid
-still not eating much
-threw up a whole bunch of apple juice
-finally fell asleep for a good nap (11:30a)
-we ARE in the PICU another night
-we MAY take him in a wagon for a walk outside of the PICU
-holding off on visitors, unless I've spoken with you about it on the phone

We'll keep you updated.

New heart family-

2009-04-10T20:28:00.000-07:00

We left tonight with Jack nice and asleep. (Our favorite way to end the night)

We know tonight is our last night in the PICU so we are taking advantage and letting the nurse do her thing. Jack had ELEVEN visitors today. He has the largest fan base.

Despite his fits, he is still doing great. The nurse cut the prongs off his oxygen, so it isn't irritating his nose so much. So hopefully he'll have a better sleep.

We met baby Grant, and his parents Kyle and Alli. Grant is the CUTEST BABY IN THE PICU and he is doing well- at the moment, but has had a very rough road. So we wanted to send more prayers his way. But also, welcome him to the HLHS family.

Cutest baby, seriosuly.

Goodnight- sleep well, Jack.

Evening-

2009-04-10T17:07:00.000-07:00

We had a pretty good day. He had one or two set backs with O2. He absolutely refuses to leave it alone when he is awake. So he is better off asleep.

He did have alot of visitors today. It was so awesome to see the support! Thank you guys all for coming up. He was happy to see you. Although, when are alot of people in there at once I think it is a bit over-stimulating, and I think from now on we are going to reduce the visitors to 1-2 people at a time, so he doesn't get so excited. It isn't that he isn't happy to see everyone- it's just that he wants to get up and socialize, but can't cause he is still groggy.

We will be in the PICU one more night. He'll have his other chest tubes taken out tomorrow, and we should move to recovery.

Thanks everyone for coming up to see us, and bringing sweet things. I love you all.

The nurses still love him, despite his little oxygen fits!

Afternoon-

2009-04-10T13:03:00.000-07:00

Jack has had a GREAT day so far. He's had some visiors, who he says hello to. He even told Evan "Happy Birthday". And he asked Lyndsey "Where's Libbie and Woofie?" (Libbe and Sophia, her twins. And Jack's girlfriends.)

He is talking really well, and he is very alert. He played a little bit with some toys. He is allowed to eat now- so we may try some food later.

Thank you again for the visits. They help break up our day, and I know Jack is happy to see all his friends.

Well post again later tonight.

OH, the echo looked good, and depending on bed availability, we could move up to recovery tonight.

Morning-

2009-04-10T08:09:00.000-07:00

We got here to a sleeping boy. It's always nice to leave, and return to a sleeping boy. Though the nurse said he was asking for us. But the good news is he is no longer restrained, he is talking more and more. Still being polite. :)

This morning he will have a sedated echo at 10am, and they will take his main chest tube out at that time. Then after he wakes up, he will most likely be moved to recovery.

I will let you know how all that goes..

(PS, our nurse this morning is very sweet. And she said he is a very good boy. :))

Jack-

2009-04-09T20:57:00.001-07:00

Here are a few images, they are in order of time, so the most recent his him sleeping, at the bottom. Looking peaceful and comfortable. That's right before we left tonight. Good night Jack! Sweet dreams...and don't let the bed buggers bite.

Another day-

2009-04-09T19:38:00.000-07:00

We've successfully made it through the "crucial 24 hours after surgery". Jack had a rough morning, and we discovered it was the adavan that sent him to crazyland. Our nurse today was AWESOME, and we discovered that loratab is a good thing for Jack. It works well. Progressively thoughout the day Jack became more and more cooperative. Don't get me wrong- he still is grabbing and tugging at everything attached to him, but he at least can be calmed down. Usually with juice, or loratab. He had ANOTHER good nap after the one I mentioned this morning. And another while we left for shift-change. He is asleep right now, and the night nurse is awesome. He said that while we were gone Jack woke and looked around for a second, then asked for some juice. He gave him the juice, Jack said "thank you" and went back to sleep.

Josh and I are going to spent the night at home again, so we can rebuild our physical and mental strength. Tomorrow we should move into the recovery floor, where we won't have 24 our private nurse care. So we need our energy.

Thank you so much to Auntie Sue, who spent some time with Jack while we had lunch, and had to deal with a few fits. She is so good with him, and I can leave feeling comfortable she is there with him.

Also, my dear friend lyndsey and her husband tyson, who were there for poops, fits, naps and juices. You guys are so awesome and it's SO comforting to have Jack be with people that really love him. Thank you Lynds for staying with him.

He is comfortable- so we can all be glad for that. And for this night nurse...

God bless poor Ellen, that was with Jack last night. May she be well rested..

A peaceful moment

2009-04-09T10:31:00.000-07:00

We got here to find out the poor nurse had a long night with Jack. He continuously tries to pull his O2 out and has been moving around alot. Hedid aggrivate one chest tube, and it's bleeding just a little, but nothing to be concerned about. We gave him some Loratab, and after a whole morning of wrestling with our poor little boy, who is all doped upand out of his mind- he has finally fallen asleep. It's so nice to see him just rest. We've given him some juice, but he can't drink too much, because they are already trying to drain his fluid filled body. We've also sat him up and tried to talk to him a little. He IS responsive, and if you tell him to cough he'll try to cough. And he was fake sneezing...like he does sometimes. So he's still Jack.

I'm assuming he'll be in the PICU another night. But we'll see how the day goes.

The hard part..

2009-04-09T06:35:00.000-07:00

After Jack was extubated he gradually began waking up Josh and I would sit by him and try to keep him calm. After the shift change at 8pm he started to wake up even more, and it was getting harder and harder to keep him still. He'd sit up which yanks all the things attached to him. Every time he reaches his oxygen to pull it out we have to (3 of us) hold him down to get it back on. Jack has never been comfortable with things invading his body, but now he is old enough to do something about it. Josh told me to go lie down in the "bedroom" they had provided for us, but I wasn't getting any sleep due to the noise, and at midnight he came to tell me that Jack would try to sit up every minute and he thought we should both go home and let the nurse do her job, which was to take care of Jack.

It was hard to leave, and though I did get some sleep it wasn't restful. My heart is racing right now knowing that he is probably awake and we aren't there. So I'm going to get dressed and head up right now.

I'll let you know how he is doing later on.

5:30pm Post-Op

2009-04-08T16:12:00.001-07:00

Jack's surgery was roughly 7 hours. It was longer than expected because Dr. Kouretas had to reconfigure the Glenn, to work the Fontan into the tiny little space he was working with. So all is well, Jack now has an 18 gortex conduit in his chest that his getting nice bloodflow to his lower half. He is TRULY a different color. He looks amazing. We just extubated, and he is breathing well on his own. They are just starting to administer pain medication. He isn't very awake, but will open his eyes and look around at us, and sometimes try to move. His arms are restrained slightly right now, to avoid him pulling any tubes out. There are 3 chest tubes in to drain the fluid, then an IV is on his foot, he is getting blood through his other foot, there is an arterial line in his hand, and a central line going into his neck. So he's a bit tangled up. The only pictures we have right now are from our phones... So forgive the lack of resolution.

We will most likely be here for the night, and we will take shifts being with him. They would like to have him off of the HEAVY pain medications before they move him to recovery.

Thanks again for our awesome visitors, and all those keeping in touch with us during this time. We love you all, and Jack appreciates the prayers and support.

(Ok, I am not allowed to upload pictures onto this computer. I'll try again later. Just picture Jack with a bunch of lines and cords all over him, looking like he is sleepy, but much PINKER than he usually is, and you'll get the idea.)

UPDATE

2009-04-08T13:58:00.000-07:00

Jack's surgery is comlete, he did a great job. His surgeons said he was in GREAT condition and that everything went smooth. It took a little while to get through his scar tissue, but once they did that the procedure went by quickly. He is off bypass and he is being closed up. The surgeon will be talking to us shortly and we will see him soon in the PICU.

I'll update after we see him- as soon as I can.

Thanks for all your love and support. Everyone has been wonderful. And thank you SO much to my Aunts, Suzi and Jill, who came and sat with us through the whole surgery. They kept our spirits up and kept our minds occupied.

Love you all-

Pre-Op prepped.

2009-04-07T13:22:00.000-07:00

We had a great pre-op today, Jack was a champ. We listened to his heart, got a chest x-ray, drew some blood, and came home with a whole bag of goodies. Tomorrow it's up and at'em at 6:00, and surgery is scheduled to begin at 8am.

We'll update this blog throughout the day.

Thank you ALL for the love and support. And to those who have gotten Jack gifts, you have made him a happy boy. It's like Christmas. Seriously.

Love you all.

Tuesday, Wednesday, WHENEVER

2009-04-06T14:03:00.000-07:00

So surgery was bumped to Wednesday, because the PICU is full at Primary's. (Sad...)

So we do pre-op tomorrow, and surgery wed morning at 8am.

IN THE MEANTIME, Jack cut his own dang hair off.

See here.

Meet Jack's Surgeon

2009-03-27T20:54:00.000-07:00

Dr. Peter Kouretas has been there since the beginning. He knows Jack inside and out. (Literally.)

This man is responsible for Jack's life, and we trust him with it. I can't imagine the pressure these doctor's feel each day, with so many special lives in their hands, but it is absolutely phenomenal that they do this service to strangers. It is something they are so good at, that they make a living of saving lives. I hope they get to go home get a good nights sleep doing what they do. Because I don't know if I would.

Dr. Kouretas will be performing the Fontan on Jack. It is where they attach the inferior vena cava to the pulmonary atery. That way, Jack's heart won't have to work as hard as it is (being that it's working twice as hard already). Once this surgery is complete, Jack's oxygen levels should raise from the 80's to 90's, he shouldn't get as winded doing normal activity, and he should visually appear pinker. (Rather than the dusky blue he is sporting right now..)

For those of you who are asking us what you can do for us during this hard time- of getting through this last surgery, please pray for Dr. Kouretas. He is the miracle maker in this combination.

The Fontan:

Surgery

2009-03-11T19:11:00.000-07:00

SURGERY APRIL 7TH

Sedated Echo, March 19th

2009-03-02T16:26:00.001-08:00

Today we went to Primary's to see Dr. Su. Jack was pretty good for him, I can't really say the same for the poor nurse. Taking Jack's blood pressure is like pulling teeth. Heaven forbid we wrap a peice of fabric around his arm. I won't even mention the O2 sats thing we attached to his toe for a minute that sent him over the top.
All drama aside- Jack looks great, I think he is doing as well as a kid with a single-ventricle heart could BE doing. Dr. Su said he looks ready to go for surgery and will be putting in a request to Jack's surgeon Dr. Kouretis, to schedule Jack's FINAL surgery. It could be as soon as a couple of weeks, but it all depends on how the surgeons feel he is doing and whether or not he'll need another cath (please......no.....)..
So stay tuned, we should hear in a couple of days when the date will be. And I really think....this is it this time folks.

Quick update:

2008-12-30T14:19:00.000-08:00

We went to see Dr. Su on Dec 15th, and he said Jack is doing VERY well, well enough to wait till march to schedule surgery. And as long as he doesn't get any worse, or show new symptoms, he shouldn't have to do another cath....which would just be super.

Thanks for checking in!

Dear Ellen,

2008-11-23T09:28:00.000-08:00

Hello from Jack, and his mom and dad..

I'm sorry to make my response so public, but I didn't want to ignore your questions. I'm sorry to hear about your grandbaby, getting the news is truly the scariest part. But I assure you that having HLHS now is better than having it 10 years ago.

Jack had surgery at Primary Childrens Hospital, in Salt Lake City, UT. This facility has become our second home and it is an incredible place. They take care of kids so well, you almost wish you could leave them their to grow up. They are very knowledgeable about how to treat children while under such unfortunate circumstances. The surgeon that performed Jack's first surgery, was under the training of another Dr. that actually WORKED with Dr. Norwood.. of the Norwood Procedure. The Cardiology department there is excellent.

Jack's limitations. As he is my first, it is hard for me to assess his weaknesses unless brought up by other parents. What is the most noticeable, but doesn't really stop him is breathing hard. Imagine how you are breathing after a sprint, that is how jack is breathing after climbing the stairs, or running around the playground or other similar activites. But it is nothing we have to be TOO careful about. I just am, because I imagine his little heart beating so fast, but really, that is the ONLY thing. Maybe now and then, he gets a little cyanotic (turns blueish) but that's only when he gets cold. His lips with look a little darker and people will think he's been eating a sucker. :) But really, he doesn't act or perform any different than a healthy three year-old, he just gets tired faster.

Asking if the surgeries were painful isn't something I can answer. It's like asking if your cat felt the shot the vet gave him. The nurses and doctors have ways of knowing if an infant is in pain, they will squirm, or try to cry (but can't, because of the breathing tube) and they will administer pain medication whenever they sense it. I'm pretty amazed at the things you can put through such a tiny body. He was on morphine and dopamine and had all sorts of delicious things to keep him comfortable. But for the first surgery, and the first stay in the hospital the baby really just sits on their little bed and doesn't do much. To see Jack open his eyes or move his hands was pretty rare in the first couple weeks. After the surgery (he had his at 10 days old) he began to heal, and come off the drugs, and each day a line was pulled so he's have less and less things attached to him. That was when he started to look around and lift his arms and kick. I'm sure at times he was very uncomfortable, but you need to rememeber that he will never remember this time of his life.

Jack was in the hospital from Dec 17th 2005(birth) to Jan 13, 2006. So barely a month. That was actually pretty short, but obviously was the longest month of our lives. He came home on oxygen, and a feeding tube. He was difficult to maneuver from one room to another, but we mostly stayed indoors during the winter. He came off oxygen in Feb, and off the feeding tube in Mar. Then he was a real, cordless, "normal" baby! It was such a milestone.

These babies are particularly strong, and resilient. They have high pain tolerances and the most unbelievable strength. At the begginning I remember wondering HOW I was going to do it, but somehow, you get strength too, and something comes over you that keeps you going. Please tell your son/daughter that. It is a very special thing to be one of these babies, and though his heart is half its size, he has more love than most of us.

If you or your son/daughter have any more questions or want to chat, let me know and I'd love to hear from them.

Heart Hugs,

~Lisa

Coughing.

2008-10-08T17:57:00.000-07:00

Does any other parent of a heart baby have issues with coughing? Jack coughs ALL the time. With no other symptoms. Sometimes the cough is wet, mostly it's dry. He wakes up coughing, coughs when he runs or over exerts himself.

It sounds like asthma doesn't it...but my pediatrician tried Albuterol and it didn't affect Jack. I'm happy that Jack isn't miserable, don't get me wrong. But who wants to be COUGHING for the rest of their lives? Not to mention peoples reactions. Whenever he coughs they look at me like "Ew...mom with a sick baby...retreat...retreat..." and everyone thinks he's contatgious.

He's not. Cause he's been coughing since July.

So if anyone out there shares this problem...please let me know.

And now, we wait.

2008-09-09T15:00:00.000-07:00

So the final conclusion after all the questions being up in the air of WHEN the surgery will be, how BIG Jack has to be and what his WEIGHT should be, we (cardiologist, surgeons, and ourselves) have all decided to wait till March. That way, we'll all be comfortable with Jack's size. Cause most likely, Jack will get BIGGER and not be shrinking over these next six months.

All doctors have given Jack the go ahead to be able to make it through the winter as long as he tolerates whatever little bumps we have along the way. Because if any mothers have secrets on how to keep their children from getting a cold during the winter..I'd love to hear them.

So we'll be looking forward to the Holiday season, Jack's 3rd birthday, and all the fun times in between!

We'll go back to Primary's in Decemebr for a check-up. Stay tuned.

"Dr. Soup"

2008-08-11T20:24:00.000-07:00

So today was the big weight check- and Jack came in at 10.7 kilos, AKA 24 pounds. That is surprisingly good, I thought he'd still be 22 or even less. So perhaps my beefed up Mac'n'Cheese is working.

Dr. Su (known as "Dr. Soup" to Jack,) was happy with the weight gain and said he felt confident with go ahead with surgery, but that the surgeon would most likely want to wait longer. The problem with waiting a few more months is that the worst time of year to have surgery and be in the hospital is December through March. So it's either REALLY soon, or next spring. UNLESS, he suddenly is showing symptoms and needs to have surgery right away.

So now we await news from Primary's.

After the visit there, we went right up to the U to see Dr. Norlin, Jack's pediatrician, who had us come see him just because he is a sweet, caring man, and wanted to check on Jack's well being. He had nothing but good things to say also, and is going to get in touch with Dr. Su.

So once again, we begin the waiting game. Sorry to get everyone all hyped up with surgery dates and CATH's and everything. I promise, he will really have this surgery someday...

Re-Cap

2008-07-30T15:50:00.000-07:00

So Dr. Su emailed us to reassure us that we haven't been forgotten. He projects that Jack will have surgery sometime at towards the end of the year...(like, perhaps December 17th-ish. OR Christmas. Seriously. Happy birthday, buddy.) Who knows. But Jack HAS gained a little weight, so we've progressed from 22.2 lbs to 23.2 lbs.

Remarkable.

I do have to say that we've been able to have a fun summer and I haven't had to keep Jack holed up inside all day due to an incision in his chest. So this really has been for the best. But he is getting noticeably more tired and he's been napping alot more. So surgery will creep up pretty soon.

Keep in touch..

So here we are...

2008-07-02T16:45:00.000-07:00

I sort of feel like the boy who cried wolf. I have all sorts of people calling, and emailing, wondering how the surgery went... and I feel REALLY stupid saying "Opf, it got postponed!"

It really did. We were all mentally prepared and it took WEEKS to get to that place where we were ok with our child being put under and put onto a heart lung machine and spend DAYS in the hospital all angry and uncomfortable, then spend MONTHS taking care of him while his incision wound healed....and with one phone call, all that was wiped away and we are back to "life as usual."

Suddenly,I don't cringe every time Jack jumps off the couch, or the stairs, or the porch...well maybe the porch a little, that's cement. But it's nice to let him play hard and throw himself all over the place. It's also been nice to swim. He loves it now and is getting really good at holding his breath under water.

So for those of you wondering how things are....there you go!

Get ready for a familiar headline: SURGERY POSTPONED!

2008-06-25T08:54:00.000-07:00

We decided to make it a tradition- to postpone major heart surgeries. We find it fun to give our family and friends a specific date, let everyone send us their prayers and support for weeks, then suddenly change the date on them.

We think it's fun.

No, no we don't. Dr. Su called this morning, after the surgeons conferenced to discuss Jack's case they concluded that Jack is too small. MY BAD. They are afraid that if they put a conduit in his heart that corresponds with his size, that they will eventually have to upgrade it and do it AGAIN after he gets bigger and out grows it. That is exactl what we DON'T want is another surgery.

So we are going to take two months to pump Jack full of butter and whole milk, and hope that he goes from his 22 lbs to between 26-28. That may not sound like much, but Jack has been 22 lbs for about 4-6 months now...

If in Mid-August he hasn't gained the weight, we'll discuss doing the surgery anyway. We'll just HAVE TO WAIT AND SEE!

I'm not too upset, as now we'll have a summer to have fun and play now. Yay.

Cath, part 2

2008-06-16T20:32:00.000-07:00

I don't have the time to be creative with my writing, so I'll be quick and simple...

The cath went well, he is doing well and has been deemed surgery bound. I was the first to see him and he was possessed by demons. There was throwing, screaming, spitting, and serious anger management issues. He wan't in pain, because he was quite medicated, but he was upset that he was being restrained by the legs and arms by 3 nurses. And myself.

By the time Josh came in Jack had had his second dose of some sort of narcotic that wasn't cutting it. So we decided to go old school and I picked him up and held him. That calmed him down, but he wasn't supposed to be curled up. Oh well.

We moved up to the surgical unit to a very comfortable room where he calmed down and became more of himself, chatting with the nurses and watching Max and Ruby. He ate pizza and drank a bunch of water. His oxygen took a dip into the 60's for awhile that made all of us nervous and simply annoyed because he was just fine and had a blow by (oxygen mask) blowing at full strength next to his face.

Regardless, the doctors gave us permission to discharge at 10pm and we are counting down the minutes.

So long story short...all is well, and jack is fine, just pissed off.

Cath, part 1

2008-06-16T13:28:00.000-07:00

So Jack was ridiculously well-behaved this morning and didn't give us any grief about not being able to eat. We left early and went to the pet store for some good puppy fun, and headed to the hospital. He had a blast in the waiting room, playing with a toy car that he was able to "drive" around. Then he was really good with Dr. Cowley, who will be performing the cath. We recieved some good news from him. If all goes perfectly well, then we should be able to come home tonight. We also learned that he'll be having a cath put in both his neck, and his leg, which is a bummer- but they gotta do what they gotta do.

The nurses usually are what gets to Jack, and when they start poking and prodding him he makes it known he is uncomfortable. So after getting vitals, we met the Anesthesiologist who has been with Jack before, and he made us feel very comfortable. We gave Jack his first dose of loopy juice and before we knew it, he was all glassy eyed and talkin jibberish. (aside from his usual jibberish)

We took him to the cath lab in a wagon and he quickly got more and more loopy, we video taped some of it, I'll try to post it. But then we kissed him good luck, and now here we are in our usual "waiting spot" on the 3rd floor.

Stay tuned.

Monday...

2008-06-13T15:00:00.000-07:00

Primary's informed us of our "instructions" for the cath. Jack can't eat anything after midnight till...well...hm. I guess when the cath is over. So our check-in time for same day surgery is 1:00pm, and he will be admitted to the hospital (to our surprise) and will be spending the night.

Last time the cath didn't go so smooth, so please keep Jack in your prayers, and after this we'll be one step closer to being DONE with all this fun surgery stuff!

The Fontan

2008-05-29T17:14:00.001-07:00

Yes, that is the fancy name for what we know as the "third surgery".

Date: June 30th

Time: Probably quite early

Place: Primary's

Performance By: Dr. Kouretis, Cardiothorasic Surgeon

CLASSIC.

2008-05-28T15:31:00.000-07:00

So as tradition goes with these things, and US, Jack's cath was postponed. The Cardiologist felt more comfortable waiting till Jack was completely over his cold and ear infection before going on with the cath. So now the cath is scheduled for June 16th.

Sorry for the inconvenince to those "on tour." You'll have to miss the fun.

Dr. Awesome.

2008-05-28T09:03:00.000-07:00

Dr. Norlin has agreed to squeeze Jack in for a check up to give him the "go ahead" for the cath, since he has been recently SICK, and on antibiotics. So on Friday we'll go in to make sure he is up to par.

I'll return then.

The "CATH"

2008-05-27T10:46:00.000-07:00

OH my most unfavorite event of all. That is only, because last time we did this we ended up in the PICU with Jack intubated all over again. BUT the doctors assure me that although that DOES sometimes happen, is usually is a one time thing.
So June 3rd, we will go in for Jack's cath.
For those of you who don't understand the purpose of the heart cath, it is purely more invetigational that it is anything else. When the doctors know better what they will be dealing with when the open Jack up, the surgery will be smoother. So this is for the benefit of the entire outcome.
I will let you know how much fun that day is.

The latest update:

2008-04-06T10:06:00.001-07:00

Jack's appointment to have his usual cardio check up and to decide when surgery will be will be May 19th. (Happy anniversary to us...)

Jack is doing just great, extremely active and definitely running out of breath a lot.

This surgery coming up will relieve some of the work his little heart is doing and finally separate the oxygenated blood from the non-oxygenated blood that is curently mixed up in his heart.

Stay tuned!

Stage 2, The Glenn

2008-01-30T15:30:00.000-08:00

Jack had the Glenn August 9th, 2006. It was post-poned TWICE, because the cath he had to prep for surgery the first time, sent his Oxygen levels into the 30's. (which is bad, they are supposed to be in the 90's) so he ended up intubated and back in the PICU. So he needed to recover from that, then right before the rescheduled surgery he fell off the bed and they decided to postpone AGAIN.

So- August 9th. His surgery was about 5 hours, they said they were happy with how things went and that he did well. He came out of surgery looking GREAT but when he woke up he immediately started to tear his face apart to get the oxygen tube out of his nose. He was very tired, and gloomy.

In just a few days however, he was sitting up, smiling, playing, and quite ready to go home. He continuously torn his monitors off, setting off multiple alarms, which was a big hint he was ready to go home.

Jack came home on Lasix to push the fluids out of his body, dijoxin to help his blood pressure, and baby aspirin. But soon- was only on the aspirin.

He came home and was happy and cheerful, despite the huge wound holding his chest together. He healed really well, and we looked forward to a whole year of no surgeries.

(Next surgery, The Fontan)

Stage 1, The Norwood

2008-01-29T20:27:00.000-08:00

Jack was born December 17, 2005 at the University of Utah hospital. We saw him for a split second before he was expectedly taken to the NICU. He was beautiful, pink and breathing fine. He was taken by LifeFlight inside a machine that was montoring his vitals to Primary Childrens Hospital. He flat lined about 2 hours later, and required revitilization and a breathing tube.

On Decemeber 19, Jack had a valvuloplasty in hope of opening up his aorta to increase blood flow and try to encourage the left ventricle to work. Unfortunately, most of the tissue around that ventricle was fiborous tissue and not muscle. It was decided to proceed with the Norwood.

On Decemeber 29th Jack had the 1st Stage of the Norwood. It was hard to send him off not knowing what in the world he would be going through. 4 hours later, the surgeons (Dr. John Hawkins and Dr. Peter Kouretis) informed us that Jack's surgery was complete, and went as well as it possibly could. Jack had the "Sano" version, where the shunt placed in his heart was attached directly to the lung vessels from the right ventricle.

Jack recovered well, and came home on January 13th, with oxygen and an NG Tube. He did so well that he was off the O2 after a week, then off the NG after a month. Thank heavens, because there were too many tricks to the feeding tube and we had made a few mistakes and over fed Jack a few times...

But in no time at all, Jack was just a normal baby, learning and trying new things. He was just perfect.

(Next surgery, The Glenn)

Welcome all friends and family of those young ones with Hypoplastic Left Heart Syndrome

2008-01-29T14:42:00.000-08:00

I realized that I am one of many mothers that looks to the world wide web for more insight on something that at one time we had never heard of, but now know more about due to our children being born with "half a heart."

All those who know about it know ALL about it, so in Lamen's terms I will breifly describe the heart defect.

HLHS is a congenital heart disease thats cause is unknown. And prior to recent years, it was unable to be diagnosed till after birth, and in mose cases, after death. HLHS is when the left ventricle of the heart is underdeveloped and can't pump blood on its own. In the fetal heart, while the baby is still in utero, there is a passage for the blood to flow through called a "ductus". But when the baby is born, and breaths oxygenated air and uses its lungs, the ductus eventually closes, leaving babies with HLHS unable to pump blood accordingly, and lose life.

When first told about this defect the Dr. describe three choices. One, was to have a heart transplant. It is quite rare that a heart will be available, and very risky for infants to undergo such a complicated surgery. Two, was a three stage surgery that was introduced to surgeons just over 20 years ago. It is called the Norwood procedure. Three- was called "comfort care", in which case you would let nature take its couse and the baby would die within days of birth.

Obviously, the best chance at life would be the Norwood Procedure. Stage one, a shunt placed in the heart would allow blood to flow to both the lungs and the body. Stage two, the superior vena cava is attached to the pulmonary artery allowing gravity to flow blood to the head. Stage three would be the inferior vena cava being attachd in a place, all to alleviate the work that the right side and now the ONLY side would perform.

Stage one is done right after birth, stage two is usually done around 6 months, and stage three is done around the age of 2. Follow up work is sometims needed, but as this procedure is so young, studies are still being performed to advance and perfect the systems process.

The chances of a baby being for with HLHS is 2 in 10,000. And once you've had one, the chances of your next child having it are 1 in 4.

I created this blog so mothers and friends and family of these babies can ask questions. I have emailed complete strangers about things pertaining to this defect and the comfort I feel of relating to someone I don't even know is overwhelming. I've learned alot from other parents and I've gained strength from their successes. Please feel free to contact me.. or ask questions, or simply add your thoughts and prayers to all the AMAZING babies there are that have overcome this defect and are living normal active lives.

Bless all the little half hearts.