Tuesday, April 28, 2015

Daddy's in Charge

Saturday was a big day for my boys...mommy was gone all day and daddy was in charge of Drake's care. I knew he could do it; I probably had more faith in him than he had in himself. Sure, I have been gone for the day before and even overnight in Dallas before a race, but there was always a nurse here. This time...there was no nurse. Kennedy and l headed to the Dallas metroplex at 10am for a baby shower and arrived back home around 7:15pm. Daddy did a great job and even survived a dirty diaper! Anyone who knows Brian well is quite aware that he will avoid a dirty diaper at all cost. He's great at bartering household chores to get out of a diaper change. 

Kennedy had such a wonderful time at the baby shower! For a kid who doesn't get to interact with other children very often, you would expect her to be timid but she is not shy at all. She played from the moment we arrived until we loaded in the car for home. I loved seeing her have so much fun with my friend's daughters! Getting together with my dear friends from high school is always a treat! It doesn't matter how much time has passed since our last visit, we always pick right back up as if no time has passed. 

Sunday daddy was left in charge again, but this time he had both kiddos. I was only gone for a few hours attending a meeting to learn more about the nutraceutical products (100% all natural) that our entire family has been taking. The reason we started it is because of the health benefits to reduce seizures (as well as many other ailments)...I can definitely see an improvement :) For sweet Kennedy, she has battled constipation on a regular basis but now I'm thankful she is regular :)

I am thankful for the time I had away from the house, and I think I am going to leave daddy in charge more often :)

I can't believe I forgot this handsome photo from last week! 

So much fun at the shower! Loved watching these girls play!

Love my friends! 

Within 5min of leaving the shower.

I snuggled with this sweet angel during his nap today :)

Tuesday, April 21, 2015

Improvements & Independence

What a fun weekend with Aunt Gigi & Uncle Chuck here for a visit! Not even the constant rain could dampen our family fun! A quick thinking backup plan in the garage saved our crawfish boil. Gigi brought Kennedy a HUGE basket of gifts complete with plastic dress-up high heels! Drake is all set for the warm weather because Gigi brought him a bunch awesome muscle shirts...just like he likes! 

Today began extra early! We packed and loaded the car for vent clinic in Dallas. We finally had a nice day in East Texas without rain, but don't worry we found the rain in Dallas! We made it safe and sound to and from so that is all that we could ask for and more! Plus...Drake got an excellent report at vent clinic! His pulmonolgist was really pleased to see his improvements since last week in the hospital. He does have us giving Drake diuretics for the next two days to see if it will improve his dependency on oxygen. Hopefully this will do the trick! We are ready to get back to his vent trials. Now we don't go back to vent clinic for an entire 3 months! 

Kennedy had her very 1st swim class today! She was ready to go and I was the one who was nervous. Parents can't attend class, so I waited outside eagerly wanting to hear how she did on her first day! She did really well and she was so proud of herself! When we got home she told Lisa that she met a Lisa at her class. Nurse Lisa gave her a funny look and then I told her that her swim instructor's name is indeed Lisa. The last class is in 3 weeks and parents are invited inside for the last 15min to watch "show offs." If this goes well, we are planning to start gymnastics or dance this summer! 

We are still on the search for a night nurse 3 nights each week. We had a perspective who we interviewed, but she didn't seem like a good fit. Therefore, the search is still ongoing. We will gladly take any suggestions or referrals. 

Snuggles with my little loves! 

At the PICU ready to take Drake home!

Kisses for bubba! 

Headed home!

Clearly happy to be back home!!!

Soooo tired!

Helping Daddy cook crawfish!

Drakey got in on the fun, too!

Her BIG basket of gifts!

Dress-up! She's totally rocking the 80's look!

Excited about the cheese tray!

Cutie pie!

Smiling on his mat. Ready to get back into his daily routine. 

Ready for her 1st swim class!

Soooo excited!!!

Sent from my iPhone

Tuesday, April 14, 2015

Don't Let Your Guard Down

Warm weather, flowers blooming in the yard, and Drake was doing great with his vent trials (time off of the vent). We were entering the "safe zone" finally out of flu and RSV season. Walks in our neighborhood, playing in the backyard and sitting on the patio enjoying the beautiful weather...when it's not raining. We had some family over to celebrate Easter & Kennedy has been our regular running buddy on errands around town. I guess you could say we have been a little less reclusive. 

Then it happened...Kennedy woke up in the middle of the night throwing up and running a fever. We kept her away from Drake, but she was most likely contagious before she showed signs of being sick. She bounced back relatively quickly, but still had a lingering cough mostly at night. We thought we were in the clear; Kennedy was better and Drake was still healthy. Then, on Thursday he was not acting like himself. No effort during therapy; quite lethargic. Later that day, his fever hit. He began requiring oxygen support, but only 1/2L which was understandable and quite manageable. Other than the occasional fever spike, he was acting normal and looked great. On Saturday, we had to go up to 3/4L of O2. Not ideal, but still quite manageable. Since the only thing out of the ordinary was his requirement for oxygen, Brian and I began troubleshooting. We switched his vent out for our backup vent...no change. We did a trach change to see if that was the issue...no change. I contacted our pulmonologist, and he had us do 3 back to back breathing treatments and start him on an oral steroid through his Mickey button and an inhaled antibiotic through his Nebulizer for a possible trach infection. He seemed to improve slightly during the night and then his oxygen requirement increased to 2L. This was unacceptable. Brian and I loaded the car in the early morning hours and headed to Dallas. We contacted our pulmonologist in route and the ER was ready for us when we arrived. Mimi and Poppy met us in the parking-lot to pick up Kennedy. Thank goodness for family! 

We had friendly faces who remembered us in the ER and everyone was surprised he was on so much oxygen because he looked great! Chest X-ray confirmed pneumonia in his right lung. We were admitted to the Pediatric ICU, and Brian and I settled in for the day with our happy little boy. Everyone in the PICU commented on how great he looked, too. We all predicted a short overnight stay...we were wrong. Starting around midnight, he had a rough night. He slept, but he would wake up having coughing fits and his O2 sats would drop. His oxygen support was increased to 4L! The next morning his vent settings were increased to help with his labored breathing, and he was able to come back down to 3L. He slept most of the day other than when he would wake up coughing. Around 5pm he was awake and alert and his body temperature was back down to his normal. One of our wonderful night nurses drove from Tyler to visit us! She told me she would sit with him so that I could go walk around or grab something to eat. This was such a treat and very much appreciated! 

Last night was better, and he maintained all night on 2L. He did get very angry when they tried to check his blood pressure while he was sleeping. This morning it was obvious that he had had enough of being stuck in that hospital bed. He wanted out! We set him up in his chair, and he seemed comfortable and content. They weaned him down to 1L, and so far he is doing good. They also put his vent settings back down to his regular settings. There is some talk that if he can maintain on 1L, we might be able to go home tomorrow!!! 

Kennedy is happy and I am sure getting spoiled rotten! We sure do miss that little munchkin! We have talked on the phone and FaceTimed daily. She was able to meet her new baby cousin, Chase, who was born on April 1st. I'm looking forward to meeting him soon, too! 

Brian asked me how Drake and Kennedy got this illness. I told him that I just don't know. It's everywhere. Kennedy could have picked it up at the grocery store. Who knows? My sister is afraid that her kids got them sick. I told her that no one is to blame. As much as we try, we don't live in a bubble. We do the best that we can to stay germ free, we will fight this battle, and we will continue moving forward. 

My sweet boys smiling face! 

Our little artist! A little painting while mommy cooked breakfast! 

On Saturday Daddy redid our entire septic system! Way to go, daddy!

So glad Daddy was with us at the hospital 

Watching Mickey Mouse!

This was our roughest day :(

Out of bed and in his chair! A great sign of recovering!

Daddy's back! Boys night in the PICU! Mommy is staying the night at Mimi & Poppy's with Kennedy. 

I think it's safe to say she likes her cousin, Chase!

Bedtime stories! 

Tuesday, April 7, 2015

Family, Fun & Now a Sick Little One

Over the weekend we had the wonderful treat of Mimi & Poppy visiting for two whole days!!! This made for two very happy little children! Aunt Meredith, Uncle Aaron and their two kiddos, Jacob & Elizabeth, came for the day on Saturday! Our house was full of kids and it was definitely noticeable...running, playing, laughter, toys...and a few tears, but they didn't last very long. Our little Easter Egg hunt was definitely a success! They were so excited and eager to get started...On Your Mark, Get Set, GO! Kennedy even headed out without her basket! Jacob was really quick with egg gathering, and he was sweet to share. Kennedy shared with Drake, too! It was nice to be able to have Drake outside with us and off of his vent! Mimi & Poppy said it was almost more fun watching us parents rather than the kiddos! 

Sunday was full of rain storms and we found ourselves without power for the majority of the day. Once again we were thankful for our generator which allowed us to continue with Drake's scheduled breathing treatments, CPT vest, and kept his vent running without using up all of our battery backup. We purchased our generator several years ago during hurricane Ike when we were without power for almost a full week. Little did we know how much we would rely on it in the future. Definitely a good investment! 

Last night Kennedy woke me up crying at 2am. When I got to her room, I was alarmed to find that she had thrown up and was burning up with fever. I cleaned her up, gave her Tylenol, started laundry, and took her into the guest bedroom for the remainder of the night...and of course I stayed with her. We battled her fever for the rest of the day. Even with a fever of 101.5, she still wanted to play and run around the house. She's a pretty tough kid who is hard to slow down. I am happy to say that tonight at bedtime she was finally completely fever free! I'm praying this will last! We are scheduled for the pediatrician in the morning. Of course, Kennedy has been wanting to see Drake and give him hugs all day. Poor little thing really doesn't understand why she has to stay away from him. Instead of the nightly hug & kiss she usually gives him, she said, "night, night" to him from a distance. 

We will continue to work on tackling this little hurdle of sickness while doing everything in our power to keep Drake healthy. We opted against his vent trials today so that he was only breathing the filtered air from his vent rather than room air. Lysol is our best friend right now! Praying for healthier days ahead and a good report for next week! 

Thank you for the bunny ears, Stacy & Grace! 

Snuggle time with Mimi!

I love how we have gotten so much use out of this outfit! It finally fits the way that it is supposed to fit :)

Baby boy sucking on his thumb! The fact that he is now able to do this on his own and hold his hand there for an extended period of time is such an accomplishment! 

So sweet!

Family Easter picture!

Mommy/daughter picture! 

Egg hunt!

So much fun!


Jacob shares, too!


All about the eggs!

Playing in Uncle Aaron's car...she found the sun roof! 

All through the house! I love it!!!

Someone is excited about her toddler bed!!! Such a big girl! 

Dying Easter Eggs!