Priming the Pump

Exactly one week ago, at precisely this time of day, Zack left the operating room.

His color was good, he was stable and we got to see him as he was quickly transferred to the pediatric intensive care unit.

Fast forward seven days and you'll hear us begging, 'Zack, please don't stand on top of your toy box, you'll fall off." Oops, another Lego just went flying past my head.

We have countless people to thank for his remarkable journey. This thank you is dedicated to the fabulous medical staff at Dell Children's Medical Center.

Dr. Fox - cardiac surgeon extraordinaire! Maggie, Dr. Fox's nurse, who lovingly walked us through every step, allayed our fears and gave us confidence.

Dr. Finnigan -cardiologist who cared for Zack throughout his hospital stay who captured our hearts and lovingly kissed Zack on the head to say goodbye.

Dr. Wright - Zack's cardiologist since birth whose caution, good judgment and conservative approach helped determine the proper time in Zack's life to conduct the surgery.

Kina and Toni from the Dell Children's cardiac team who again guided us through it all, and especially Toni for the Popsicle after Zack had his blood drawn.

Nurse Sandra who made us laugh at 6 a.m. before going into surgery to take our minds off of what lay ahead.

PICU Nurses - We loved Anke, such an amazing diligent cardiac specialty nurse who was with us every moment during that first day. Thank you Kelli. We love Jenny who so sweetly kept Zack calm throughout the night as he demanded first ginger ale and then escalated to cries for Big Red in the wee hours of the night." Big Red, not ice chips, I mean it and I want it now." -- that was the morphine talking. To Jimmy whose caring helped Zack make it through the day and get up and moving.

IMC nurses and staff - you were all wonderful, Gabby, Jennifer, and thank you Laura for bathing him when I was too afraid.

Posted by Holli at 12:21 PM | Permalink | Comments (1) | TrackBacks (0)

On Friday, the day Zack returned home from the hospital, legendary heart surgeon Dr. Michael DeBakey, passed away at the age of 99.

Dr. DeBakey's pioneering work and vision made the premise of stopping a six-year-old's heart for repair to enable a lifetime of good health a reality. The skilled hands of Dr. Fox executed on that vision Wednesday.

Thank you Dr. DeBakey for your lifelong contributions. Thank you Dr. Fox for all you've done for us.

Two great men of cardiothoracic surgery.

Posted by Holli at 01:30 PM | Permalink | Comments (1) | TrackBacks (0)

Zack has enjoyed a great first day at home. He frantically played with all his toys after having missed three days of playtime. He began the day early sitting in bed at 7 a.m. playing his Nintendo DS...a special treat he only gets to play on weekends.

He and Dad then built a Star Wars Lego kit and he read a new book, Zack's Alligator, given to him by his kindergarten teacher Mrs. Wolff. To round off the day, he put on his real stethoscope, clipped four ink pens to his collar and went around the house giving mom and dad shots, listening to our hearts, drawing blood and checking our blood pressure. A little role play to process the experience? Perhaps.

The boy who gallantly walked through open heart surgery without ever shedding a tear (except for when his chest tubes were removed) continues to struggle with the daily routine of changing his Band-Aids. This simple act seems extremely stressful to him, but we remind him that he's had open heart surgery so removing a Band-Aid is literally nothing in comparison. Go figure.

Here we are leaving the hospital yesterday. He was thrilled to break free!

Posted by Holli at 10:02 PM | Permalink | Comments (1) | TrackBacks (0)

The Ronald McDonald House enabled us to stay with Zack around the clock. I would stay (notice I didn't say sleep) on a cot in the hospital at night and when Chris came in the morning, I was able to walk across the street to the Ronald McDonald House to shower and sleep for a while.

For families with kids in the hospital for critical care, this is an invaluable resource, especially for those who are there for weeks or months.

The Ronald McDonald House in Austin has some immediate and basic needs. For instance, while food is brought in for lunch and dinner most days, there were no paper cups and disposable containers to carry food back over to the hospital. I was dying of thirst one day and thought surely there would be something to drink, but while the pantries and fridges were stocked with food, there were no portable drinks like canned sodas or water bottles to grab on the go back to the hospital.

Here is a list of their immediate needs as provided to me by the director, Derrick Lesnau.

paper/plastic/styrofoam cups
styrofoam to-go containers
liquid laundry detergent
antibacterial liquid hand soap
paper towels
travel size hygiene items (soap, shaving cream, deodorant, razors)
heavy duty trash bags (33 gallon size)
*small size trash bags for bathroom cans
*canned sodas and bottled water
(*I added these as items I noticed that were needed)

I'll be collecting supplies for them and will drop them off at the Ronald McDonald house next week. Let me know if you would like to provide some of things on the list or if you would like to drop stuff by my house for me to deliver.

This will be a tremendous way to help people like the family I met from Llano with a small child that will be there for 30 more days.

Posted by Holli at 09:51 AM | Permalink | Comments (5) | TrackBacks (0)

Hooray! Zack's cardiologist gave him a clean bill of health this evening, and we were discharged around 7:45. We arrived home about 45 minutes later. Zack was excited to be home, and spent a few minutes surveying his new LEGO kits before hitting the hay.

Zack is completely off prescription medication now. The only meds he needs to take are: an aspirin once a day (for six weeks) and either ibuprofen or acetaminophen for pain as needed. He has no dietary restrictions and can resume normal activity. The only exceptions to his activity are anything that could cause trauma to his sternum. This means no monkey bars, bicycling or contact sports for at least 6-8 weeks. He may be able to resume swimming once his scar has healed completely — we need to keep it dry to prevent infection until then.

We are so proud of Zack for being both mentally and physically tough during the whole process. He really has been a trooper. We couldn't ask for a better outcome!

Posted by Chris at 11:38 PM | Permalink | Comments (7) | TrackBacks (0)

This morning, Zack's surgeon said he might be able to go home this evening. The good news gave Zack an incentive to get up and walk around a bit this morning. He walked to the playroom down the hall on his own, where he got to check out the toys, computers and paints. After that, he requested a wheel chair ride that was "really fast." He got the wheel chair part, but not the "really fast" part. We wheeled him around the hospital, and showed him the gift shop, the cafeteria and the "ball machine" in the foyer. He also went outside briefly to get some sun and check out the water garden.

He is really excited about the prospect of going home. He has been talking about building Lego kits and playing video games all day. Hopefully we'll get the green light from his cardiologist later today!

Posted by Chris at 03:21 PM | Permalink | Comments (4) | TrackBacks (0)

It is just past 6 a.m. and we've been up since 4:30 with some pain. However, since the pain medicine kicked in, he was able to sit up in a wheelchair this morning and transfer to a chair for a chest x-ray.

We're back in the room and he didn't feel like going back to bed, I guess he's enjoying the euphoria while it lasts. He wanted to stay seated in the wheelchair and watch Pokemon on tv and is doing well now. We'll see the surgeon again this morning for an update.

Looking back on yesterday, we had ups and downs. After his tubes were out he slept several hours. We were transferred to the intermediate care unit where I was apprehensive at first without the comfort of all the monitors. He's still on monitors, just without all the bells and whistles and tubes. There are only seven kids on this ward so the care is still very good but he is expected to do more here.

He woke up to see a balloon across the room given to him by Calvin and Donna Lee and their daughter Callie. He opened his eyes and focused on the frog and said..."Is that balloon for me? Can I hold it?" He felt well enough to hold it in bed for about 30 minutes and then wanted it tied to his bed.

Around 6 p.m. yesterday evening his grandpa Pops and Pat arrived. This thrilled him and he was pleasant for the entire evening.

Posted by Holli at 06:18 AM | Permalink | Comments (3) | TrackBacks (0)

Zack's surgeon removed all of his tubes this afternoon. It wasn't a particularly pleasant experience, unfortunately. However, they gave him some Versed to calm him down and (more importantly) forget about the discomfort. He still has an IV for medication, but he's free of most of the encumbrance now.

Zack also sat up with assistance this afternoon. This helped clear additional fluid from his chest and paved the way for the removal of his chest tube.

Posted by Chris at 04:03 PM | Permalink | Comments (3) | TrackBacks (0)

Zack is making marked improvement today. He even feels well enough to play his Nintendo DS. They probably will pull his chest tubes, central line and catheter today. And, we may be able to move out of the ICU into the intermediate care unit if all goes well. He got a good report from both the cardiologist and the surgeon this morning, so things are moving in the right direction. There's a chance we may be able to go home Saturday (no guarantees though).

Posted by Chris at 11:15 AM | Permalink | Comments (7) | TrackBacks (0)

Zack had a long night but did get some sleep every hour or so. He was uncomfortable part of the night and threw up his ice chips. He's starting to be in some pain but the doctors said he was being too stoic and wouldn't let on that he needed pain medicine.

They've increased his morphine and he should be more comfortable.

Hopefully later today more tubes and lines can come out.

Posted by Holli at 07:19 AM | Permalink | Comments (0) | TrackBacks (0)

Just a little more than 12 hours after surgery, Zack is in the ICU resting comfortably. He continues to complain of thirst, which is normal, and is demanding ginger ale instead of the two to three ice chips he is allowed every 10 minutes.

Looking at him, it is difficult to believe that his heart was stopped for a time today for some much needed repair work.

We continue to be amazed by his progress.

Hard to believe it, but we even got a good smile out of him this afternoon. I'm sure more will come our way tomorrow.

Posted by Holli at 07:45 PM | Permalink | Comments (8) | TrackBacks (0)

Zack is stabilized and is doing great. He's all set up in the ICU and has two nurses taking care of him. His sinus rhythm is normal, which means his heart is pumping normally. So far, he hasn't need a pacemaker (although one is ready just in case). He has been talking a bit, but sleeping most of the time. His only complaint is thirst -- we'll be able to give him water once his digestive system wakes up. Until then, he'll be getting fluids via IV.

Here he his with all his lines and monitoring equipment:

Nurse Anke checking his lines:

He's on the good stuff, and feeling no pain:

Here are his vitals. From top to bottom: heartbeat (green), respiration (pink), blood pressure (red), blood oxygen (light blue):

Things are looking good! He'll probably be pretty groggy until tomorrow. We'll post more updates once he is more alert.

Posted by Chris at 02:34 PM | Permalink | Comments (4) | TrackBacks (0)

They just wheeled Zack out of surgery, and we were able to see him briefly on the way to the PICU. He was semi-conscious, and was not intubated (good news). His color looked really good.

We had a brief consultation with the cardiothoracic surgeon. Not only was his VSD repaired without complication, but his tricuspid valve did not require any surgery. Once the VSD was repaired, there was no longer any regurgitation against the tricuspid valve. So the valve is functioning normally.

Once they have him situated in the PICU, we'll get to join him...hopefully another 45 minutes or so.

Posted by Chris at 11:42 AM | Permalink | Comments (10) | TrackBacks (0)

The OR just called again, and Zack is off bypass. They said he came off bypass gracefully. They are now closing him up, and we'll see him soon.

Posted by Chris at 10:52 AM | Permalink | Comments (2) | TrackBacks (0)

We just got another call from the OR, which was surprisingly quick. The repairs to his VSD has been completed, and Zack's cardiologist is reviewing his TEE. Once he has given the thumbs-up, they'll take him off bypass and close him up.

Posted by Chris at 10:21 AM | Permalink | Comments (0) | TrackBacks (0)

We just received a call from the OR. Zack is now on bypass and they are preparing to complete the repair of his VSD.

Posted by Chris at 09:50 AM | Permalink | Comments (0) | TrackBacks (0)

Getting ready for surgery this morning well off without a hitch. Zack got right out of bed (at 5:30 am!) and hopped in the car. We got to the hospital around 6:00 and went through a few last-minute checks and sign-offs. The nurse gave him some Versed to help sedate him. The medication took hold quickly, and he was in a drunken state within minutes. We gave him hugs and kisses just before 7:30 am — right on schedule.

The surgical staff will keep us updated as the surgery progresses.

Posted by Chris at 07:45 AM | Permalink | Comments (0) | TrackBacks (0)

We'll be at the hospital by 6 a.m. for a 7:30 a.m. surgery start time.

First surgery of the day is always a good thing -- even better knowing your surgeon has just returned refreshed from a relaxing vacation.

Zack will be given a sedative and then ride a tricycle or be pulled in a red wagon down the hall into the OR around 7:30 a.m. where he will be given a root beer flavored oxygen mask with the special sleeping medicine.

He has one assignment from his doctor tomorrow morning. He has to name three brands of root beer for his cardiologist before the surgery.

Anesthesia will take about an hour, then cardiopulmonary bypass will take about an hour, and then the actual surgery will take maybe another three or so. We'll get hourly updates from the staff and will post them to this blog.

Stay tuned.

Posted by Holli at 09:49 PM | Permalink | Comments (2) | TrackBacks (0)

Zack decided he needed some new material before the trip to the hospital this morning for his pre-op work up. Here are the new jokes he will be performing today.

Knock Knock.
Who's There?
Gorilla.
Gorilla Who?
Gorilla Me a Hamburger, I'm hungry.

Knock Knock.
Who's There?
Icy.
Icy Who?
Icy your underwear!

Knock Knock.
Who's There?
Ice Scream.
Ice Scream who?
Ice Scream when I think about going to the hospital.

Posted by Holli at 08:48 AM | Permalink | Comments (2) | TrackBacks (0)

Q: Zack, what do you want to be when you grow up?

A: I want to be a candy man and own a candy factory.

Q: If you could live anywhere in the world where would you live?

A: In the desert because I like cactus.

Q: What is the most important thing to know in life?

A: History.

Q: What is your favorite activity?

A: Playing video games.

Q: What kind of car do you want to own?

A: A red Barchetta.

Q: What is your advice for people who are getting old?

A: Eat chocolate candy.

Q: What is the answer to world peace?

A: People need to climb more trees.

Q: What should people do more of?

A: Walk their dogs.

Q: What should people do less of?

A: Play video games.

Posted by Holli at 05:06 PM | Permalink | Comments (2) | TrackBacks (0)

A precocious six-year-old, Zack was born with a special heart. And while he continues to grow and thrive, it is time to fix his ticker. On July 9, he will undergo open heart surgery where they will do a few repairs to make him better than ever.

Here's a few things about Zack you probably didn't know. He's an avid swimmer, an amateur entomologist and a camo belt in taekwondo. While he has an ever-growing collection of stuffies (aka stuffed animals), it is rivaled by his collection of bottle caps taken from the various flavors of specialty soda pops his dad enjoys. He recently became interested in cacti and has a growing collection including Mr. Prickles, the Pacmen, Fuzzy and Hibotran.

His favorite foods are steak, broccoli, strawberries, peanut butter and Nutella sandwiches, and generally any kind of candy that is sour, sweet or chewy. Oh, he has a discerning palette, enjoys sushi, and will send back a steak that is overcooked.

He loves playing with Legos and Bionicles, drawing, listening to kids music, and creating a tent and camping out in his room when he isn't running around or riding his new blue and yellow bike he got for kindergarten graduation. (Note: Sadly the new bike has to be put in the garage for 12-16 weeks while his sternum heals from surgery.) He has recently started learning to play basketball and loves it almost as much as he loves pretending to know how to play golf.

Zack is loving, kind, charitable and caring while being loud, noisy, messy and generally your typical six year old.

Posted by Holli at 09:40 PM | Permalink | Comments (2) | TrackBacks (0)

Zack took a tour of the Dell Children's Medical Center today. Each child got their own box of medical equipment to explore including a stethoscope, oxygen mask — they can pick their own flavor the day of surgery, EKG tabs and tubes that they might see while in the hospital.

Everyone then put on masks, booties and head covers and we went into an OR and then a recovery room where they explained what they might see and feel.

Zack thought the whole thing was very cool and insisted on keeping his mask so he can wear it again.

Posted by Holli at 04:40 PM | Permalink | Comments (2) | TrackBacks (0)

Zack will be having open heart surgery on July 9. Many people have expressed interest in Zack and his surgery and recovery, and have offered prayers, encouragement and support.

This blog is designed to provide regular updates about Zack and his medical journey.

Feel free to leave a message or greeting for Zack by clicking on the comments link at the bottom of each entry.

Posted by Holli at 04:09 PM | Permalink | Comments (18) | TrackBacks (0)