Tuesday, September 27, 2016

36 Hours

At this point, I'm quite positive I have passed the point of being up 36hrs straight. It has been so long since I have spent this much time awake, but when we are short handed, that's my job! I knew going into this week that I would not have a day nurse on Tuesday, but it was an unexpected turn of events not having a night nurse for Monday night. Our regular night nurse had a sick kiddo, and our other night nurse was not able to pick up the shift because of jury duty. Not to worry...we survived! Drake is hooked up to louder than you would imagine alarms during the nights, and I did try to catch a little sleep in between his treatments; however, my hyper-vigilant mommy-mode would not allow my body or mind to rest. I was terrified I would not hear his Def-con Level 5 Alarm (as if that would be possible to sleep through)! Of course that would have woken me from even the deepest of sleeps, but my mommy brain would not allow rest. The good news is that Drake slept like an angel and so did Kennedy and Hayes! Praise the Lord! 

Most people are not aware of the changeover happening for Medically Fragile children on November 1st.The current system in place, which allows us to see a variety of doctors/specialist, is going away completely. Here in Smith county we have two choices of managed care: United or Texas Children's. While this seems like an easy decision, it is actually quite challenging. Drake sees about a dozen doctors, most of which are located in Dallas. I'm doing my best to ensure Drake can keep his specialist, or at least his most vital. Right now we seem to be in a catch 22...I can keep this doctor but we will lose this one...I plan to push this decision right up until the deadline, and hopefully I will have more informed information to base our decision upon in the next couple of weeks. 

Our new day nurse is taking the trach/vent class tomorrow, and she should be starting with us on Thursday. I'm excited to start training her and hopefully have completed our search for the perfect addition to our care team! She seems wonderful, and she even stayed when she came out to our house for the meet and greet to learn as much as she possibly could about Drake and his daily routine. 

Tomorrow is a big day...our new nurse will be coming out after her trach/vent class to get checked off from a Respiratory Therapist and Drake is scheduled for a swallow study. He has not had a swallow study since January of 2014 right before he was hospitalized and had his trach surgery. Tonight we are praying for a restful night for all and a successful day tomorrow with nursing and a swallow study! 

My sweet boy!

Sweet Drakey lost his very 1st tooth during tummy time! Our dentist had warned us that this was a possibility. Due to the way tongue protrudes and is therefore constantly applying pressure on his bottom teeth. 

Stander time!

Saturday birthday party fun!

Yes, even mommy played! 

Giddy-up horsey!

Wild man!

Date night! Downtown Tyler Film Festival! 

My whole heart!

Tuesday, September 20, 2016

The Search

Things didn't work out with the first two nurses I trained to fill our open position. I spent today working with and training a cover nurse who will be with us the next couple of days. She did an amazing job and I wish she could be our permanent addition to Drake's care team; however, I do understand why she is a perfect fit for stepping in where needed to provide nursing for many children. We will continue to pray for the right person to be placed in our home. Finding the right nurse may not always be easy (and I have even wanted to throw in the towel along the way), but once we find the right person, they have all been a blessing to our Drake. 

On a brighter note, we had a successful outing to the zoo! Despite the extremely HOT temperature, Drake did really well! Nurse Lisa and I were very impressed with his O2 sats and overall demeanor. The cool wrap that Nurse Lindsey got for him was a lifesaver! I did a terrible job taking pictures at the zoo. On our next visit, I will make it a point to do better. 

While I know in reality our nurse search could continue for many more weeks, Brian has reminded me how happy we will all be when we find our perfect fit. 

This guy deserves the best! We will continue to search until we find the best fit.

Getting ready for duck season!

Hayes is ready for food!

Total bean domination!

1st visit in the petting zoo!

She was excited about the baby goat!

Hayes' zoo trip!

She spotted the flamingos! 

Tuesday, September 13, 2016

Training Day

Today was day 1 with our new nurse. I think she did really well for her 1st day, and she interacted really well with Drake! I have a huge appreciation for fast learners! Drake adapted very well to her on day one, too. That's a really big deal when it comes to our little guy. 

Brian took Kennedy to and from pre-school today, and he had a smile the size of Texas across his face when he was telling me about picking her up from school! I absolutely love watching him interact with all three of our kiddos! 

Hayes is such a good boy! He's busy and into everything, but he is also just as sweet as can be! He has definitely learned what the word "no" means, and he is getting much better about leaving Drake's equipment alone. Kennedy was almost 2 when Drake came home with a Trach & vent, so this is a new adventure tire with a baby. 

Tomorrow is a new day and it will be day 2 with our new nurse. Even though starting
 out with someone new is difficult, each day is easier than the last. We are praying for a restful night and a smooth day tomorrow. 

He's having fun!!

My bath time sweetie! He found Nemo!

Kisses for mommy & daddy!

Top Notch Burger in Austin was awesome!! A great stop on our way to New Braunfels!

An amazing experience sharing our story in New Braunfels!

I was honored to speak in San Antonio!

I love theses amazing women!!

Wednesday, September 7, 2016

New Beginnings

How is it possible that Kennedy started Pre-K?! It doesn't seem like that long ago that i was holding her tiny little hand inside of her incubator. I remember clearly when I was finally able to hold her in my arms for the first time. That green vinyl polka dot recliner quickly became my happy place! Her strong willed personality and determination was visible from early on. The nurses would take so much time and tedious care in positioning her carefully on my chest with all of the cords and tubing placed just right. Then, our spunky little Kennedy would decide she wanted to turn her head and face the other direction. We all did good today and I am proud to say that no tears were shed...(if Mimi were here, that would be a different story). She had a fantastic day and she is ready to go back on Thursday!

Our little Mr Independent, Hayes, is getting so close to walking! He is still a speed crawler, but he is now pushing a walker across the room with the a look of pride that absolutely beams! He loves to talk to us all of the time. Dada and mama are clear, but the rest is baby gibberish; although, Kennedy is hard at work teaching him to say her name next :) 

Drake is continuing to improve and work hard daily. He's gaining strength and amazing all of us with some of his skills in pushing up, assisted sitting, and sustained head control. However, the second a camera is pulled out to capture his incredible improvements, he absolutely will not show off. That little stinker! As much as I would like to document these achievements, I'm excited he is so aware of his surroundings! 

Walking in with daddy on her 1st day!

I LOVE her excitement!!

Wasn't this just the other day?!

It's hard to believe our tiny baby girl is in pre-k!

11 months old!

Silly boy!

Love! Love! Love!

Catching some sweet snuggles with my baby boy!

Playing with Drake!

Not the best photo, but showing great strength!

Look at him go!

Traffic jam!