Fontan +11

Home again, home again, jiggity jig.

We are out of the hospital!

Elijah already has two follow up appointments, one with his pediatrician and one with his cardiologist.

He's going home on aspirin and two different diuretics, aldactizide and furosemide. They will wean him off the diuretics over time, but the aspirin is probably for life. Good thing it tastes like candy.

In addition, he is on scheduled ibuprofen and acetaminophen for inflammation and pain.

It was such a relief to leave that he immediately fell asleep in the car. He has been on high alert for the past week, looking out for nurses in blue scrubs. He's going to be a little shy for quite a while.

This blog will now return to its regularly scheduled programming. Thanks for following Elijah's progress. Look forward to news about the rest of us!

Fontan +10

Yesterday a sweet friend surprised us with a visit. Thank you so much for coming by! Being in the hospital for so long can feel a little isolating at times, so it is fun to have visitors. Even if Elijah takes his time warming up.

Another friend from our Lubbock days came yesterday evening to catch and bring delicious Korean food. We liked it. A lot.

This morning Dr. Verma came with the fantastic news that Elijah blood work and X-ray came back looking great and that we can go home tomorrow! Yea!

We celebrated by eating lunch in the cafeteria and going for a walk.

I found a nearby ward to go to for Sacrament Meeting this morning. It was a little weird to leave the hospital and drive around, but worth it.  While I was gone the nurse took out Elijah's last IV. While we were on our walk I yanked off his cheek stickers that were left over from his oxygen cannula.

He was kind of mad and was trying not to smile.

But then he got over it, and he looks great!

I'm not gonna lie... I never expected to see him at 98% oxygen saturation on room air ever. We were working on deep breaths, and it obviously paid off! He is like a new little man, running, jumping, and climbing. The next challenge is keeping him from overdoing it for the next four to six weeks and giving his sternum a chance to heal. It's not going to be easy, but so worth it!

Fontan +9

Good news! The cardiologist was very happy with this morning's X-ray. He stopped all IV meds and changed to oral furosemide (diuretic) twice a day. This is what Elijah was taking at home, so we got permission to use the meds we brought from home. Hopefully Elijah will remember they do not taste gross and will take them without a fuss. 

He still has to take potassium because the blood draw showed it was low this morning. They changed to a liquid that could be easier to get in him, but right after he (unwillingly) took it he threw up. Blah.

As long as Elijah keeps looking good on oral diuretics, we will probably be able to bring him home Monday.

We had a visit from two hospital security officers after I set off the smoke alarm in Elijah's room while straightening my hair this morning. What?! Elijah slept throught it all.

We've taken a long walk all over the hospital today. The play room is closed on the weekends, so we asked the nurse for directions to the nearest park. She laughed. We laughed...a little.

You know you've been at the hospital too long when...

...you start referring to meds as "PO" or "NPO" and "Q8" or "Q12."

...you can make tuna crackers and peanut butter apples just like at home using cafeteria food.

...your child can sleep through the smoke detector alarm.

...your three-year-old can read the pulse ox monitor and tell you his own sat. And he knows when to say, "yea!"

...you know how to connect and disconnect the monitors and you do anytime you leave the room and come back.

...your fingernails are the longest they have been in a long time because you haven't done any normal household chores or cleaning in a week.

...you're running out of the travel sized toothpaste you brought.

...you realize you're actually going to still be here when Phineas and Ferb Star Wars premieres on the Disney Channel, and you're looking forward to watching it. (No cable at home.)

...you have read every book you brought and resort to checking out teen fiction from the children's floor library or reading one of the political/legal thrillers your husband brought and has also finished reading.

...the charge nurse sees you approaching the nursing station and says, "Hey, troublemaker!"

Fontan +8

Good news! Elijah's chest X-ray looked better this morning, so they dropped the extra diuretic. He is still on an IV diuretic three times a day, an oral diuretic twice a day, potassium by mouth twice a day, and aspirin once a day. We will see what tomorrow's X-ray brings. Hopefully closer to home.

The fish tank in the family waiting area is nice and peaceful. We never see anyone waiting there.

Today we "slept in" after waking up every three hours for a med, poke, or X-ray. After a late breakfast we walked, played, ate lunch, played some more, watched a movie and checked in for meds, and  ordered dinner in Elijah's room. Uncle Allen and his work partner came by for a visit in their police officer uniforms, compete with flashlights, fire arms, hand sanitizer and stickers. It was fun to talk to them!

After dinner we took it easy, and Elijah must be feeling good with his O2 sat hovering around 90-92. Hooray for good numbers! Elijah has also learned to recognize 91 and 92 from paying attention to us and the monitor. Other new favorite vocabulary words: Medical City Children's Hospital, cafeteria, cannula, and yucky medicine.

This is aspirin, and not yucky. He just rejects all oral meds currently...

Also, Zoe the visiting clown proclaimed Elijah "a tough audience." You have no idea.

Elijah: baffling doctors since 2010

When Elijah was born in 2010, they had the cath lab and nicu standing by because they expected to take him to surgery immediately after birth. They reserved the largest room in the ICU post op because he was so young, they thought he would need extra machinery, including a prolonged time on the ecmo or heart/lung bypass machine.

Contrary to expectations, Elijah was discharged in 21 days. After his second surgery five months later, we were home in five days.

The cardiologist paid us a second visit this afternoon to discuss the results of the sonogram he ordered to take a closer look at the pleural effusions that are keeping us here. He and the nurses are surprised that his O2 sat stays consistently in the high 80s and sometimes 90s. He is up and all outward indications show that he is getting better. The sonogram showed very little fluid on the left side and less fluid on the right than he expected, based on the X-ray, so that is good news. Still, we need to see the amount of fluid actually decreasing before we can transition off IV meds. The doctor seemed surprised to see Elijah looking so good in all other areas in spite of the continued fluid accumulation.

As much as we are all tired of the hospital, we definitely want Elijah well enough that we will not run the risk of ending up back here after he is discharged, so we are doing what we can to help him understand what's going on, to take unpleasant oral meds quickly and move on. His negotiation skills have developed tremendously. It's too bad there are some things you just can't bargain away.

Today we took a walk outside to get some fresh air, vitamin D, and get a closer look at the fountain. Then Elijah ranked the three fountains we have discovered so far at Medical City Children's Hospital. The outside fountain is definitely his favorite. 

We were invited to the first birthday party of twins who were born conjoined and have been treated here. It was quite the event with media and lots of hospital staff attending. All the pediatric patients were invited as well. Elijah scored balloons, cake, punch, and live savers candy. It was fun, and a reminder that I will take my own hard challenges any day rather than trade with someone else.

More time...

...to play his favorite game in the play room. Looking on the bright side on things :)

Fontan +7

We just visited with the rounding cardiologist. Sigh... More fluid, more diuretics, staying longer...

They're adding two IV doses of a different diuretic to his daily regimen. The fluid has to start coming off or we will be back to worst case scenario: reinserting a chest tube.

Praying for lots of pee!

Fontan +6

So we had good news and bad news today. The bad news is the X-ray this morning showed fluid on Elijah's lungs still, enough that the cardiologist increased his diuretics to three doses a day by IV and one oral dose. The diuretics cause loss of potassium in the blood, so Elijah also has to continue taking potassium twice a day by mouth, usually crushed up in a Popsicle slush. 

The good news is Elijah is definitely feeling better and more like himself because he was running around in addition to walking, went down to the cafeteria for all his meals, talked to the nurses more, and was a little more cooperative about taking meds and vitals. He had a bath today and wore his own awesome new Spider-Man socks. (Thanks to Daddy's friends at work!)

Elijah loved talking very briefly on the phone with his brother Jack, and his sisters Ellen and Rose, and Nana.

Unfortunately, our night nurse discovered that Elijah's one remaining good IV was leaking when she came to give meds at 9:30 tonight. It took two hours to get the poke expert here, a new IV in, and meds administered. So much for getting to bed early tonight.

We do know that we will be here all day tomorrow and tomorrow night, and after that we will see what the cardiologist sees and says. Thank you for your thoughts and prayers.

Fontan +5

Most of our day today felt more like a stay at an over-priced hotel than being a patient at a hospital, but there were plenty of reminders of reality.

Until today, all of Elijah's sticks for IVs and lines happened while he was sedated, and blood draws came from his central line, so it came as quite an unpleasant shock to wake up to the lab tech drawing blood starting with a needle poke and ending with a bandaid. Soon after that, transport arrived with a wheelchair to take him down for an X-ray. We were used to someone arriving and doing the X-ray right in his room. Just after breakfast we were giving him the oral meds he hates, and just after he finished taking the last one, Elijah threw everything up, including breakfast. :(

The rest of the day we walked all over the hospital. We got to take Elijah with us down to the cafeteria to eat instead of ordering a tray to his room. We discovered the children's floor library and read a few books. We spent a little time in the playroom, took a trip to a vending machine, watched movies, and walked some more.

Just as soon as Elijah fell asleep after dinner, exhausted from walking and walking and walking, the night nurse came in with another round of oral meds. Seeing panic and terror in my baby's eyes as I coaxed him to eat a Popsicle slush mixed with crushed potassium (while he cried and told me it tasted yucky) made me want to toss it in the trash, carry him out to the car and drive home. Good sense prevailed.

This morning's X-ray showed less fluid around his lungs, but still more than is safe, so we will stay another night, monitor, check blood and take an X-ray in the morning, and pray for good news.

Fontan +4

This morning Elijah woke up in a good mood, ate a whole bowl of a Fruit Loops, went for a walk and then wanted to sit on the couch in his room with Daddy instead of get back in bed. He was sitting there playing memory when the doctor came for his rounds. After taking a look at Elijah and checking his vitals manually because he was off the monitors, he said it looked like Elijah was done with the ICU.

During the course of the day they removed the last chest tube, turned off the oxygen, stopped the milrinone drip, did a chest X-ray, a sonogram, and an echo, and then called for a room upstairs on the regular pedi floor. Elijah was awake and playing games, walking laps, eating, using the toilet and watching movies all day. He took a short nap just before dinner, when they gave us the final word that we were being kicked out of the Congenital Heart Surgical Unit (ICU), and we packed Elijah's five bags of clothes, toys, snacks and gifts.

After dinner it took an hour to get Elijah to take his chewable Tylenol and the potassium crushed and mixed with a Popsicle, but he did it and got really excited about taking a ride in the wagon to a new room on the children's floor where the play room is a short walk away.

He rode around to say goodbye to one of his favorite night nurses, Mr. Joe, and then we headed out and got settled into a new room.

We have a few more boxes to check before Elijah will be cleared to go home. He needs to maintain a high enough oxygen level on his own, especially over night. His blood work needs to come back with higher levels of potassium and calcium. He needs to transition to taking all meds by mouth. The little bit of fluid they saw on the X-ray and sonogram today needs to clear up. Walking and the diuretics he's taking should help with that.

This little man is doing so well. We are so proud of him and so grateful for all of you.

Fontan +3

Elijah was more like himself today. It probably had something to do with the fact that he finally got some major stool softening help. He was out of bed walking laps four times today, he ate a little more, and he had visitors.

A friend from so long ago it seems like a previous life stopped by to meet Elijah, introduce her four! children, and drop off a gift and card. Elijah has read his Jake book half a dozen times and played with his Jake, Captain Hook, and Tick Tock Croc all afternoon.

My sister Mary also came by and managed to get a smile and conversation out of Elijah, complete with photo documentation.

Elijah's oxygen is turned down as low as they will let it go while he still has one chest tube, so as soon as they are able to remove the tube, he will get to try losing the oxygen as well. Before surgery his O2 sats stayed in the high 70s and low 80s. Since surgery he has been hovering around 90% as expected. That is a great number for him.

His big goals for the day were bowel movement, eating, and walking. Success on all three fronts.

He either really likes his night nurse or he is just feeling more comfortable, because he had a bath in bed, dressings replaced, and then still took all his oral meds without protesting. Now he is sleeping peacefully and fully monitored. 

This has been Elijah's default face for the past three days, when he wasn't playing possum and pretending to sleep or completely wiped out and sleeping for real.

Yea! My happy boy made an appearance!

Thanks for the visits today!

Fontan +2

Elijah has been resting most of the day, except for taking two laps around the floor after breakfast and four more after lunch. Walking with an IV pole and oxygen tank is serious business.

Smarty pants is himself enough to realize that every person who walks in the room is there to do something to him, so he closes his eyes and rolls to the side. He has avoided or put off some potentially annoying and painful interruptions to his rest.

He is down from four liters to one liter of oxygen, which is a good sign and one step closer to going home.

Sweet dreams, big boy!

Fontan +1

In the nearly 24 hours since Elijah's surgery:

He woke up in the middle of the night and tried to stand up in his bed. He nearly made it, but the nurses managed to get him calm and sleeping again.

The doctor making morning rounds cleared him to very small drink rations and as much food and walking as he can tolerate.

After getting his first 50 milliliter ration of his drink of choice (Sprite, but Elijah calls all carbonated drinks root beer), he cried for more root beer every five or ten minutes for three hours. He refused to be distracted or redirected by movies, games or toys, and he was coherent enough to pull out all the stops. "Just a teeny, tiny little bit of root beer, please?" He even tried to smile for me.

We went for a walk down the hall and back, and he did great, but he was not very happy to be challenged physically. He was so exhausted that he immediately fell asleep and has been sleeping for a couple of hours.

The plan for the rest of the day is to walk some more, see what he can eat, and continue to ration his "root beer."

Settled for the night

All done, now for the recovery

Dr. Mendeloff just came out to tell us that surgery is over and successful.

Elijah and his entourage just rode by to take him to recovery, where they will take about an hour to get him settled in. Breathing tube is out, and he is pink! :)

Goal for now is to keep him sedated and comfortable.

Thank you for your prayers. They are being answered.

Just started surgery

A long night turned into an even longer morning. There are only so many ways to entertain and console a tired, hungry, uncomfortable and nervous three-year-old. They finally took him back to start surgery at 12:30 and said see you in seven hours.

Thank goodness the versed through IV started working in seconds. Unfortunately, the nurse wouldn't give any to me or Jack. 

Loooooonnnnng night.

Elijah was sedated and sleepy for a couple of hours after the heart cath. He had to stay still on his back for six hours to allow the groin stick site to start healing well. Ha. Also, he woke up with a wrapped right hand and an IV. So with the perfect combination of a three-year-old coming out of anesthesia, required to stay immobile and unable to use his right hand, we had a very, very grumpy little boy.

He was thirsty and hungry, and all he wanted to do was sit up and eat his own Popsicle all by himself. Daddy came to the rescue and held his orange Popsicle because Mommy could not do anything right.

He finally let me lie down beside him on the bed and hold the iPad so he could watch a movie, but he was very put out about not being able to choose it and turn it on and hold it himself. At 9:45 pm he was finally allowed to sit up and was able to eat better. 

I sat up with him until after midnight, when he finally was settled enough to go back to sleep. I stayed on the bed with him because I was worried he would try to get out of bed in the middle of the night. After about four hours of sleep, he was up at 5 begging for the iPad again.

Now he is happily playing and waiting for his ride back to the operating room for the main event. The good news is he will be sedated and monitored after surgery, so we won't have to be the stay in bed police for a few days. His heart cath results came back very positive. He is a great candidate for the Fontan procedure with fenestration.

And.... Now he's grumpy again. Check back in a few hours. Surgery should take about six, and we will update as we can.

Thanks for all your prayers and good wishes.

Heart cath complete

Elijah did great! He is coming out of anesthesia, will be transferred to recovery and a room on the pedi floor, and will have surgery bright and early tomorrow morning.

Ten years

Ten years ago today, Jack and I both got up early in the morning to get ready for a trip to Dallas. Ten years ago today, we would never have imagined making a similar trip for such a different reason. Ten years ago today we spent several hours in a location less than a mile from where we are today. Ten years ago today Jack and I had lunch together, just the two of us. It doesn't happen very often, but we ate lunch together today.

A couple of months ago, I called Elijah's doctor to schedule a surgical procedure that we knew he would need to have done this summer. Jack told me to schedule it for the first available date after the 4th of July. I scheduled it and wrote it on the calendar. 

When Jack got home from work, I gave him all the details, and his first response was, "Why did you choose that date?" "What? You said to choose the first available date after the 4th. Do we have something else going on July the 16th..... Oh. Right."

Yes, yes I did schedule Elijah's heart cath for our tenth anniversary and heart surgery for the next day.

Ten years ago today we spent the morning at the Dallas Temple. We are spending today at the hospital a mile down the road. Today I am really, really grateful for the promises and covenants Jack and I made with each other and with God ten years ago. No matter what happens in the coming hours and days, our family is sealed together for eternity.

Thank you to our families and friends for helping with our other children so Jack and I could take this amazing tenth anniversary trip together.

We're getting old. It took a while to figure out how to take a semi-okay picture of ourselves at the Dallas temple last Friday night.

Just went back for heart cath

We've arrived, being admitted

I

Here we go again...

Background:
Elijah was prenatally diagnosed with hypoplastic left heart syndrome in the summer of 2010.
Eli's first surgery (the Norwood) was performed when he was born in the fall of 2010.
Eli's second surgery (the Glenn) was performed in the spring of 2011.

Who: Patient - Elijah Starks; Pediatric cardiothoracic surgeon - Eric Mendoloff; Pediatric cardiologist - Tracy Laird
What: Fontan procedure
When: 8 a.m. July 17th, preceded by a heart cath. the afternoon of July 16th
Where: Medical City Children's Hospital; 7777 Forest Lane, Dallas
Why: HLHS; random chance; GJAI; a butterfly flapped its wings; this, and this.
How: some of the best tools of modern medicine used correctly by some of the best trained medical professionals

animated video of procedure (Stage 3 video in middle of page)

Testing, testing...

I still have a few more back posts to do to get all caught up. This blog is not my journal, but it has become something of a family scrap book. The longer I keep it up, the more valuable the stories and pictures become for our family, and especially our kids. I started it as a way to share pictures of the kids with our parents and grandparents, but I am also realizing that Ellen, Jack, Rose, and Elijah already love looking back at pictures and reading what they were like when they were "little." I believe they will treasure the stories and memories from their childhood even more as they grow.

To that end, I have also been more mindful of recording my own memories and stories, not just of my life as a mom of four children and a wife, but also of my parents, grandparents, and grandparents, and another people I love who have helped me become the person I am. I want my children and their children to know who they are and where they come from. I have volumes and volumes of personals journals that may never see the light of day. That's okay.

I'm a paper and pencil kind of gal, and the rapid changes in this digital age feel a little disorienting sometimes. For example, I have no idea what I touched on this touch-screen iPad to make this picture show up just now, but that is my mom and dad on their wedding day. Just looking at that picture makes me want to be better, do better, live better, and love better. Our family has a couple of huge events coming soon, both joyful and scary. I look forward to recording and sharing some of my thoughts and feelings then.