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.

I read this today and I LOVE IT!

http://powerofmoms.com/2013/01/you-dont-have-to-like-it/

You don't have to like it. I can totally get my head around that idea. Somehow it's affirming and liberating at the same time.

This is my favorite quote:

"I may wish for children who are perfectly obedient, respectful, kind, and generous, but if they were, then how would I grow? Motherhood is every bit as much about my personal growth and development as it is about my children’s."

Also, today I am happy that I can be a good friend to someone who was having a terrible, horrible, no good, very bad day. I love her and her family so much, and I understand a little bit of what they are going through. Though I hated it at the time, now I'm kind of glad I've been there and done that.

Matching tongue and shirt. That's talent.

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. 

Home

Things are back to pretty normal around here. We got home Monday afternoon and played with Nana, visiting cousin Kason, and Ellen, Jack, and Rose.

Tuesday we all went to the summer dollar movie to see "Walking with Dinosaurs." Wednesday we went to the Hewitt Library end of summer splash party and Hewitt Park. Mostly we played at the park. Elijah was too short for most of the inflatables and wouldn't have been able to climb them anyway. (No pushing or pulling for 4-6 weeks to allow his sternum to heal.)

Elijah had an appointment with his pediatrician to check in after surgery. Dr. Clark's medical student got to play twenty questions with us and try to "diagnose" Elijah. Fail. Elijah's heart defect is one of the most rare of all congenital heart defects. We had a nice visit and got the all clear for Elijah to go ahead and have his teeth cleaned as scheduled with the other kids next week.

Pa came in time for dinner Wednesday evening, and Thursday he took Kason and Nana back home. We will miss them, especially the kids, who have been super spoiled by all the Nana and Pa attention.

Thursday afternoon we went to turn in our library reading logs and eat lunch with some kids meal coupons the kids scored for reading. Then we spent some time at the Mayborn Museum and finished up the day with dinner and a movie at home for Daddy and the kids, and a fun baby shower with dinner and friends for Mommy.

Today we did yard work and errands, cleaned the house and went to see another movie. We are really living it up here, taking advantage of Daddy's last few days off. 

And loving the nice weather.

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.