This boy

The first time we went grocery shopping after school started and he was the only child not in school, we scored this cart. Every dream in his precious little heart was realized.

Little man discovered he actually loves tomatoes when he previously vocally and vehemently declared his everlasting hatred for the fruit. Why the change of heart? He helped pick out plants, plant them, water them, squish snails, and harvest these lovely pear tomatoes. Also, yellow is his favorite color. He is still unfortunately prejudiced against the red variety most of the time, but progress is progress.

The great thing about older siblings is that they teach the younger ones lots of neat stuff, like how to write their names all by themselves! (They teach them other not-so-great stuff also.) Since last fall, Elijah has learned to spell, write, and read the names of all of our family members. I love the kind of learning that goes on at this age.

I mentioned I got a job. It was a very hard transition for this little guy, who was looking forward to staying at home with Mommy and playing games and doing puzzles all day, every day while the kids are in school. Fortunately, the sweet lady who watches him for several hours each weekday is happy to play, do puzzles, take him to story time and play at the park, and introduce him to other like-minded friends, both adults and children. 

We still walk the kids to and from school most days. Just a month or so after last summer's surgery, this boy walked all the way to the school and back. When I say walk, I mean he ran. He has so. much. more. energy.

He has figured out pedaling! The little daredevil likes to go down the driveway, across the street, and into the neighbor's driveway. This scares me to death. Time to get a helmet and a bicycle with brakes.

Snow in Waco, Texas? What is that about? We got some quality play time in, had a day of school cancelled because we don't mess around with school buses driving on ice here, and then the sun came out and it was over. I would like to state for the record that we have spent two of the coldest winters of my life potty training. We have become friends with socks, along with our shirt and underwear.

Whaaaaaat? When did he get tall enough to pull that bubble around himself? Post-surgery growth spurt is for real.

He rode all the way around the block with just a little help up the hill.

This boy. This boy I prayed for, and have prayed so much for, and continue to pray for. He is going to do great things!

Ahhhh, autumn

Happy Autumn! I have been loving the cooler weather in the morning on our walks to school. The snails are back, and my summer garden is gone and a new fall garden experiment is in place.

I have three in school this year, and one at home. The best quotes of the school year so far come from Rose.

"Mom, I thought I would HATE school, but I LOVE it!"

"Mom, I thought I would know NOTHING when I started school, but I know LOTS of things."

"Ellen thought I was going to get lots of color changes, but I haven't gotten a SINGLE ONE!"

R: "That's the boy I'm going to marry." M: "How do you know? Did you talk to him? Did he talk to you?" R: "No, but he looked at me the whole time we were having nap time. I'm going to marry him."

Elijah's visit to the cardiologist last week was exciting. His O2 was 98%!!!!!!!! The echo showed no leaking whatsoever, and the cardiologist said that Elijah is an example of a perfect Fontan. We are so grateful for our amazingly skilled pediatric cardiothoracic surgeon, Dr. Eric Mendeloff.

On the home front, Elijah has been reluctant to go to our co-op preschool without me, to his primary class on Sunday, and to even go on errands with me. His idea of a perfect day is staying home playing games with Mommy all day long. To his supreme disappointment and in spite of his vocal protests, this does not happen often.

Before the official start of fall and after the beginning of school, we have taken in a concert and fireworks at the new McLane stadium at Baylor and gotten caught in a downpour on our way to a football game in the same stadium. We fill our days with school, work, church, biking, piano, swimming, reading, playing, lying in a hammock in the back yard, tidying up, spending time with friends, and looking forward to more fun and time together as the season progresses.

First post-op checkup

Elijah's morning meds used to look like this, with everything but the aspirin again at night.

Last Thursday we took a day trip to Dallas to see his cardiologist.

A trip to Dallas includes lunch and ice cream at Braum's.

While Elijah and I checked in at the doctor's office, Jack and the kids walked around the hospital and found all of Elijah's favorite places.

Elijah and I did paperwork, height and weight (12.8 kg), blood pressure, O2 (90%!) and an EKG, which Elijah hated. They put stickers all over his chest and clipped the stickers to the computer to monitor his heart function. He cried about the stickers coming off, too. His chest is very tender still.

Then he had a sonogram, crying, lying on me, until M&Ms and Mater on the tv cheered him up.

When Dr. Verma came in to talk to us, Elijah remembered to tell him he doesn't want to take the yucky aldactazide anymore. It turns out that they checked his lungs a little when they were doing the heart sonogram and didn't see any fluid, so we are starting to wean off the diuretic, starting with the yucky one. We are down to three morning meds and one again at night. Yea!

After the checkup, we headed over to the Perot Museum to spend the afternoon.

Dinosaurs in 3D!

We wore ourselves out having fun, and then had dinner and finished off the day with a trip to the Ringling Brothers and Barnum & Bailey circus at the American Airlines Center. We got free tickets while Elijah was in the hospital and thought it would be a good thing to do the same day as his checkup since we would already be in Dallas. The day was long, but it was so fun. I had some low expectations based on a childhood experience with a circus, and I was pleasantly surprised and amazed. It was a very, very, very good show. Elijah's favorite animal is the tiger, and he was over the moon to see ten tigers in real life doing their tricks.

Once Ellen realized that things were going on in the dark areas, she was almost more interested in trying to figure out what they were setting up for next than in what was going on front and center. Funny. She was also a perfect responding audience member. Every time the ringmaster said something like, "If you want to be amazed, someone say YES!" Ellen was jumping out of her seat and yelling.

By the time we got home Thursday night it was nearly midnight. Good news at the doctor's office, good fun at the museum and the circus, and good night, sleeping children all the way home. 

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!