Sunday, May 25, 2014

Busy May

Well, here we are, 7 weeks post-op from Strider's last surgery. Although he had some physical restrictions for 6 weeks, we didn't let that stop us from having a busy month! We started out the month of May with a fun trip to the Children's Festival in Newport News....

 

Strider and a police car!

Serenity's first pony ride
The Children's Fest was held in a park, so Strider's highlight was the swings at the playground. Serenity got to do and see all the things....children's theater, pony ride, barn animals, fun bus, etc... It was all free, which was amazing.

For Mother's Day weekend, we visited Brad's grandmother and great aunt in NC. We had not seen them, since well before the surgery, so it was an overdue visit. I got to sleep in, shop by myself, take a nap, and enjoy a family meal at the local steakhouse....all in the same day! It was definitely a nice Mother's Day gift for me. The kids enjoyed having the full run of the porches and yard, and communing with nature outside.

Selfie of me and the kiddies!

My mum on Mother's Day
 Serenity also discovered the joys of using Mommy's phone to take 9,000 pictures of anything you could possibly think of. Surpringly, there were some "gems" in there, and it was interesting to see things from her perspective.
Aunt Nita

Me

Strider

Yes, Serenity did take this!

Mr. Cow and Boots say "hi"
Right now, we're still enjoying Memorial weekend, and that has been pretty active, too. Yesterday, we went to my friend, Brooke's son, Carter's 2nd birthday party...nice weather, nice location, good food, lots of fresh air, and lots of kiddies running around. Serenity and Strider wore themselves out! Well, correction, I wore myself out, because I'm the one that actually napped that afternoon. LOL.

Today, we went to the Pungo Strawberry Festival (http://www.pungostrawberryfestival.info/), which I've been to about 3 other times, in the past. This year, the kids got to enjoy it. It was very sunny and warm, so we prepped with hats, sunscreen, drinks, etc... Serenity has extremely fair skin, and Strider is sun sensitive (due to his hearts meds) and temperature sensitive. We got there in the late morning, and stayed about 3 hours. I love this festival, because it has a small town feel, it's family-friendly, and it's got something for everyone....shopping, carnival rides/food, 4-H, and military/rescue demonstrations. And let's not forget the star of the show....strawberries! Serenity loved the carnival rides, and would have rode every one, if given the chance. Strider got to go on a kiddie car ride, and the giant slide. The kids got their strawberry smoothie, and I was very happy with my strawberry shortcake. We got through everything with no health issues, and no meltdowns, so that's a success story in my book!
 
giant slide

A very happy and excited Serenity (on a big girl ride!)
 
vroom!

 



strawberry shortcake (from the Lion's Club booth)
Serenity is going to be 4 next month, and she's growing like a weed. She is equally sensitive and shy, and sassy and daring. LOL. Strider is doing incredibly well, and shows no signs of slowing down. He is his active, usual self, like he didn't just have major surgery a month and a half ago. I actually have to tell him to slow down, and take it easy, on a regular basis. Ah, a preschooler and a toddler.....their energy....I've got my hands full with these two!
  

Thursday, April 17, 2014

Post-Fontan

Well, we safely made it home from Philly. Serenity made a beeline for her stuffed animals, and Strider made a beeline for the train table. Nothing says "home", like old, familiar toys.

Unfortunately, Strider spent another night tossing and turning, and whining, so Brad was up with him several times, and neither of us got much  sleep. Certainly can't blame the little guy, but hopefully, Strider will get past his rough nights soon. We do give him Tylenol before bed, since we know he's feeling it at the end of the day. I gave it to him again this morning, once he got up, because he had that rough night. I think at one point, he pulled himself up, to stand up in the pack & play and hurt himself. Once the pain med kicked in, he was feeling fine, and wolfed down a mini belgian waffle in the hotel dining room for breakfast. He even fed himself, which he hadn't done in two weeks since the surgery.

We got a later start on the road than expected, and we had some long pit stops, which made for an  7-hour trip home. Strider did okay with the trip, but towards the last 2 hours, he was getting antsy (and probably sore), and so was looking quite pitiful at times. Thankfully, Grandma was on hand to keep him entertained.

We have a chest xray and cardiologist appointment tomorrow afternoon, so it will be good to check on his status. After that, hopefully we can relax and have a nice quiet weekend. The focus now will be to make sure my normally-active little man doesn't hurt himself, or overdo it, as times goes on and he starts to feel better. So far, he's been taking it very slow.

Thank you to everyone for all of the love and unwavering support to our family. It is truly amazing how many people kept tabs on us, and sent prayers and good thoughts our way. We are truly blessed in so many ways. We've still got a lot of work to do, but it's good to be home.

Here are some pictures from our discharge yesterday....

like Daddy, like Son

Leaving CHoP!

Dinner (Strider glued to me)

Enjoying his long-lost toys back at the hotel

Wednesday, April 16, 2014

Fontan - Day 13 (freedom!!)

That "freedom" in the title is probably what Strider would be saying, except I think he's a little too shell-shocked right now.

Strider tossed and turned and whined from 3:00am onwards, and I lost count of how many times I got up to adjust him, or cover him, or just assured him it was okay. I think his poor little tushy had enough of that bed. We had the 4:00am xray, which he was unhappy about, given that he already wasn't sleeping well. However, I am happy to report that the xray continues to show the lung fluid decreasing. That meant that discharge from the hospital was now set in concrete for today. The docs' main concern still is that he stay hydrated. He eschewed (my $50 word for the day) liquids all morning and most of the afternoon (except a few sips here and there), but thankfully his drinking picked up later in the day and evening, particularly when we "bribed" him with a chocolate milkshake. His appetite has also greatly improved, but it's still not at Strider's pre-surgery level yet, where the kid acted like he couldn't get food in his face fast enough. LOL.

Strider and I took an early morning walk around the quiet halls of the cardiac floor. As much as I would have loved to be sleeping, I rather liked the quietness of the halls every morning, before the masses started trooping in for the day. Once the family showed up from the hotel, I made a beeline for a shower and some cafeteria food. I will miss the breakfast variety (particularly the belgian waffle with chocolate chips and strawberries.....yum!!), but man, I ate lousy just about the whole time I was there...we all did really. We need to get home, so we can start eating better! LOL. That display case with the myriad of doughnuts and pastries was particularly damning.

During the course of the morning and early afternoon, we were visited by a multiple nurses, docs, case manager, technicians, etc....I swear, during our time at CHoP, Strider's heart was listened to by different people, at least 10 times a day. Unfortunately, Strider did not get a break from pain, as the IV needed to be removed, and they had to cut out the stitches from his chest tube area. Sigh...We decided to wait on removing the heart lead stickers from his chest (and assorted bandaids) ourselves for another day. There was lots of questions, paperwork, instructions, and then finally we were discharged after 1:00pm. It was great to see Strider in clothes again, and to walk out of the hospital with him, but there's a sense of nervousness about it, too. You walk out that door, and now you're completely responsible for him again. Being a heart parent means you gotta really know your kid, and always watch for signs that something is not right. It's nice to have that cushion of medical staff nearby and his vital signs clearly displayed on the monitor.

Considering that we got the "all clear" that Strider could go back to daycare (with physical restrictions), when we were comfortable with it, we thought it safe to bring him to a restaurant for a late lunch. At first Strider was glued to me, but eventually relaxed enough to enjoy his mac & cheese, french fries, and milkshake. Granted, it's not the healthiest of fare, but we were just making sure he ate something. We thought the kids might like to get a new toy to "celebrate", so we took them to Toys R Us. Serenity was overjoyed, and Strider quietly walked among the cars and trucks, and said "Wook" (look), but he was fast becoming tired, and it was getting to be too much for him. Serenity got something, and we figured we'll get Strider something when he feels more up to it.

Back at the hotel, Strider did love reuniting with all of his old toys. He cuddled his old pals, purple puppy and green puppy, with a little smile. Matchbox cars were strewn all over the floor in no time. He is refusing to squat down to pick something off the floor, and tell us to get it for him. That's not something we're going to encourage, but for today, considering what a hard, busy day he had, I'm not going to worry about it.

We have a chest xray, and a followup appointment with the cardiologist, back home on Friday. It's to make sure everything is still hunky-dory after discharge. Thankfully, we don't have to stick around to do it at CHoP after all. Well, everyone is now fast asleep, so I will say "ta ta" for now. I will plan to do one more post tomorrow night, about our journey home, and then I will take the weekend off from the blog. Good night, everyone. "See" you tomorrow night. :)