Our little 14 month old, Miles, had his 9 month post open heart surgery cardiology appointment.
From start to finish, the appointment was 3 and a half hours. They take forever, but that is okay.
We check in, we head to floor 3 which is cardiology, fill out some update papers and wait. M is all over the waiting room and so excited to be running free. We get our little beeper and it goes off about 5 minutes after we sit down.
Start off in triage, where they do weight/height/pulse ox/blood pressure. Sometimes they do a mini EKG. We got to skip that this time. Then we head off to the exam room.
After the exam room, we head off to ECHO! Whoop! The tech asks if we want to strap his arms down and we deny that. She asks if we need to wrap them, we say maybe, but let's start off with not. We just plopped him down and pulled out our little bag of goodies to keep him busy.
ECHO starts and so far, so good. Lots of red & blue on the screen, you can see all four chambers, and that is as far as my expertise goes. Yup. I can't read ultrasounds well. Hence the reason why we never found out our babies' genders.
After a super long ECHO and all the toy "freshness" worn out, it is complete. Now we move back to the exam room and wait. And wait. And wait. Our cardiologist has to read the report and watch it just prior to coming in to speak with us.
Miles is climbing the walls, the chairs, under the table, under the desk, opens everything and scrapes his legs from falling over a million times. I never bring enough stuff to keep him busy.
Anyways, the card comes in and we chat. We get our questions sort of answered (we still see cyanosis and he sweats too much still). The answer is essentially that he will probably always do that since his heart is repaired and not 100% perfect. We can accept that and since we have a pulse ox at home--I'm cool with it. After the chat, he tells us to come back in a year! A YEAR!!! We get a full year before we have to return. This is HUGE in the heart world.
This is a quote from a mom on one of my heart boards~
"One of the surgical team explained it to us in terms of sewing. When you repair a shirt, patching the hole "fixes" it, but the very act of sewing on the patch also damages the shirt. You create stress points where the needle goes in and out and where the thread tugs on the cloth. You may say this is "as good as new", but it isn't because you have more risk later on. Risk from both the original hole and the repair work. Chances are good you'll never have problems, but you still have to watch out for it. Our son is doing very well, but a repair is not a cure. He will have to see a cardiologist for life."
Next up for me is to order his medical records. In full. Including the nurses reports. I'm just in the part of our journey where I am ready to read about my son's battle with CHD.
Monday, May 26, 2014
Thursday, May 22, 2014
Our 2014 Summer Wish List
Our family makes one of these every year and we actually do most of the items on there except for summer 2013. We pretty much were in a health-safety bubble to keep baby M from getting ill before his first (and hopefully only) open heart surgery. He got the "OKAY" clearance from his cardiologist to start living life a bit more. We are grateful and very appreciative of this opportunity and chance at a somewhat normal life.
We aren't going to get to do ALL of these this summer, but we are going to attempt as many as possible. If it doesn't feel like a good idea, we'll scrap it. If it is a great idea, we'll go for it. I'm not a glutton for punishment, nor a complete crazy mom. I love the idea of a slow summer, but the reality is that I have 4 boys that can't be cooped up all day. Well, I could, but that means they would be behind a screen for a huge portion of the day and I don't really like that idea. Some are trips, some are at home activities, some are wishes, but they are all fun. The three older boys came up with many of them and I added a few in. I bet you will be able to tell which ones are from me:) All the activities are designed for the Dallas/Fort Worth area.
- Devour an ice cream cone from Beth Marie's
- Go to the Dallas Zoo with our zoo pass and take the DART train in
- Build a sandcastle on the Isle du Bois at Lake Ray Roberts
- Have a round of golf AND rent a golf cart at Texas Woman's University's golf course
- Paint rocks for the courtyard
- Make homemade bubble solution and see who can make the biggest bubbles
- Make confetti eggs and smash them on each other at the park
- Make homemade lemonade
- Join the summer reading program at North Branch
- Join the Recycled summer reading program
- Finish the library program and go to the waterpark if they have that reward option
- Plant sunflower seeds
- Go on a scavenger hunt
- Take a night walk
- Make a hide-a-way in the bushes
- Pick a topic or activity from SCISTARTER and make it happen
- Visit Goat Man's Bridge but don't tell the kids the legend behind it.
- Walk over a $2.5 million bridge
- Watch the airplanes take off and land at Founders' Plaza at DFW International Airport
- Make homemade ice cream
- Go peach picking
- Create an original oil panting
- Catch a fish
- Try ten different parks
- Go to the Dallas Arboretum in August (when there is a huge discount)
- Fireworks-go see and buy sparklers
- Enjoy a treat from Atomic Candy
- Listen to Twilight Tunes with a picnic dinner
- Color the boys' hair with temporary color or Kool-Aid
- Hit up happy hour at Sonic for a half price slushie
- Make s'mores over the fire pit
- Have a pajama day
- Be in the Yankee Doodle 4th of July parade (promote CHD awareness)
- Donate Day! (the big toy sort and donate them to an organization)
- Put together a puzzle
- Sew a tooth fairy tooth holder bag or a pillowcase for each boy
- ONE Screen Day (unlimited computer, t.v., Wii, or DSi) and Mom can't say turn it off until dinnertime
- ONE Screen FREE Day (no screens at all--even for Mom)
- Feed the stingray sharks
- Make treats for our local firefighter station
- Make treats for Daddy to take to work for the police station
- Have a movie day or night
- Go bowling
- Feed the ducks cracked corn (but not bread)
- Fly a kite
- Watch a sunset at the lake
- Watch a sunrise ** not to follow watch a sunset**
- Bring back the roller skating memories
- Go backyard camping (or if we are brave, lakeside camping)
- Write a letter to a friend **an actual handwritten letter with a stamp**
- Walk the dogs
- Have a "be afraid" dinner night where mom picks weird and crazy foods to eat.
- Make a pool noodle marble run
- Dye eggs since we never do it at Easter
- Tie Dye a t-shirt
- Eat a watermelon and have a seed spitting contest
- Make homemade milk shakes
- Make popsicles to eat
- Make ice chalk
- Skip rocks
- Take family pictures
- Make a dough-handprint design and bake it
- Have a recycled art project
- Play Bocce ball
- Destroy and remove the old playground set in the backyard *I think it can be scrap recycled*
- Go on a day trip without saying where we are going
- Have a water balloon fight
- Make something out of paper maiche
- Attempt to geo cache a hidden treasure
- Go to the Geometric Art Museum in Dallas
- Try to go to Fantasy Landing
- Attempt to go to Fountain Palace
- Use our free ticket to the Perot Museum and take the DART train in
- Check out Klyde Warren Park
- Buy a I "heart" Denton bumper sticker
- Go to the Denton Community Market
- Make a watermelon cake
- Visit the botanical garden in Grapevine
- Champion's Days try to attend at least one
- Sew 3 Christmas stockings **already have the stockings, but need to actually sew them**
- Celebrate Miles' 1st Heart-iversary 8/22
- Celebrate 20 years of marriage to my love
- Make a school scrapbook album for boys 2, 3, and 4 (similar to boy 1's)
- Finalize school registration for boys 1 and 2
- Buy school supplies for preschool, 2nd grade, and 8th grade!
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