Tuesday, February 24, 2015

Calm & Quiet

For our little family, the past week has been pretty calm and quiet. This is certainly not something we are going to complain about. Last year at this time, our lives were in a crazy disarray with Drake in the PICU in Dallas. We were in a winter weather mix at that time, too. Calm & quiet at home is a trillion times better! 

Daddy arrived home from Florida late on Friday night! We were without a night nurse on Friday and Saturday nights. I'm thankful that daddy was home to take care of Kennedy and Drake had day nursing which allowed me to take naps. Brian and I even watched a movie in our living room on the big TV Saturday night! Which we normally don't do because Drake sleeps in the living room and the nurses are working on their notes in there, too. 

Drake's new pulse-ox machine arrived on Friday which made a huge difference! After the 1st of the year our old DME company was no longer working with our insurance, which made it impossible to get more probes for our machine. Without probes, our machine was useless. I have been battling with insurance since December trying to get a new machine covered. Having a continuous monitor on him while he is sleeping is the only way for us to ensure that his oxygen saturations are staying high enough. For the past few months, we have only been able to spot check with a finger monitor. This was unacceptable! Each letter of denial that we received only fueled the fire! I'm thankful for Drake's doctors who all sent letters of medical necessity on his behalf. Hard work and perseverance finally paid off! 

Kennedy, our little helper, is wanting to assist more and more with Drake. She follows directions really well and shines with pride after completing a task. She is ready for some nice weather so that we can play outside again. Although, we are hoping for enough snow in the morning to have some cold weather fun!

Starting Friday night we officially have a full nursing crew! This should allow me to hopefully catch up on some sleep I've been missing the past few months...no guarantees, but I am hopeful! 

Daddy's home early due to icy weather!!!

Silly girl! Reciting her favorite lines from Frozen while we watch. Seemed like an appropriate choice based on our weather!

Breakfast with her dolly & doggy! 

I had to try him in the rocking chair!
Snuggles with mommy!

Loving Mommy's rocking chair from childhood!

She also loves mommy's old rocking horse!

Pure awesomeness! 

Tuesday, February 17, 2015

Drake 4.0

He isn't new and improved...although, he does show improvements each and every day. He has moved up from a size 3.5 trach to a 4.0. He has been ready to move up for a couple of months now, but during trach changes I met too much resistance trying to put it into place. I simply did not feel comfortable forcing it into his neck; therefore, we took it with us to vent clinic today and let the professionals work their magic. This is going to be a good change for Drake. He's becoming a big boy and he needed to move up to a big boy trach. 

Vent clinic went really well today all the way around. His chest X-ray looked great and we have been approved to begin vent trails again. This means Drake will once again spend some time each day completely off of the vent. We will begin tomorrow with 30min two times each day and gradually increase weekly as tolerated. Our goal is 2hrs two times daily by our next vent clinic in April. Having him off of the vent, even for short periods of time, allows us such a sense of freedom within our home! 

Daddy had to leave for a business trip on Valentine's Day morning at 4:30am. Kennedy keeps checking the driveway daily to see if Daddy has made it home. We are definitely ready for him to be home on Friday! We did have a surprise visitor this weekend...Yea-Yea (Brian's mom) came to visit!!! We always LOVE visits from grandparents, but this mommy really appreciates it after two nights in a row of night duty! Yea-Yea made it possible for me to take a much needed nap! What a treat!!! She also cooked us dinner and cleaned the kitchen. Grandparents really are the best! 

I love watching Kennedy and her caring nature! I can hear myself coming through when she is talking to Drake and Harper. She really listens and takes in everything she sees and hears every day. I have to be honest...the way that she interacts with Drake sometimes catches me off guard and brings tears of joy to my eyes. I'm pretty sure I saw the same in Lisa's eyes today, too. 

After Drake's diagnosis, we had to grieve the dynamic we had envisioned of Drake & Kennedy interacting together. Although what we have today is not what I had imagined in my head during pregnancy, it is a bond I am extremely thankful for between our children. In the past I had shed tears of sadness over things and experiences they would not be able to do together. Now I am able to see through a new perspective just how much they are able to enjoy each other's company. Each one of them is able to teach the other new and valuable lessons every day. Brian and I are both grateful to now be able to see what was once a heartbreak is now a blessing. 

Hugs for bubba!!!

Kisses, too!

Wearing Daddy's hat!

Yea-Yea brought a table & chairs that used to belong to cousins Alyssa & Hannah!!!

Hanging out at 4am isn't so bad when it's with this little guy!

Silly pictures for Daddy! I love that they are both looking at each other! :)

Such a good workout! 

He is getting better & better with this gait trainer! 

Attempting to stow-away in Daddy's suitcase! I don't blame her...we told her he was going to Disney World to see Mickey & Minnie!

"Mom, I'm trying to concentrate here!"

"I'm running!"

This laugh!

My little sweetie-pie! 

Tuesday, February 10, 2015

365 days...

One year ago tonight, the weather was freezing, the roads were icy, Brian was out of town on business, and Drake was being admitted to the Pediatric ICU in Dallas. Needless to say, it was a scary night! 10 days later he had surgery and received his trach. We spent the next two months in the hospital recovering and learning his care before we could bring him home again. Tonight, as I am typing this, I am sitting with my sleeping angel and listening to the constant hum of his ventilator in the background. During those long months in the hospital, we did not get much sleep. Being home and shorthanded on nurses, we do not get much sleep either. However, I will take this lack of sleep at home over the hospital any day of the week! 

We have a new day nurse who has replaced our sweet nurse that we lost to the NICU. While it was a loss for us, it was a gain for all of the sweet preemies that she is helping. Our new nurse had a great 1st weekend and she is working out wonderfully! She loves our sweet boy (prereq #1) and she is eager to learn his total care! We are thrilled to have her on our team! We now have two nurses on staff! 

Next week, our new night nurse for 4 nights each week will begin! That will leave one position (3 nights/week) open. Today we met a nurse who wants that position and she will be able to start in 2 weeks! That means in two weeks we should have a FULL nursing staff!!! I'm pretty excited about this, and not quite sure how long it will take my body to adjust to actually sleeping. 

Sweet Kennedy and I attended a baby shower on Saturday for one of my dear friends and former teaching colleagues. I can't wait to meet her baby boy! Kennedy honed in on his peddle car as soon as we arrived, and she got a chance to test it out before we left. Definitely a toddler approved toy! It was a fun treat to get out of the house and catch up with dear friends! 

Drake has been doing outstanding with his therapies! Luckily, we still have the gait trainer on loan and he is getting stronger every day! His physical therapist has noticed a huge improvement with his weight bearing during his sit to stand exercises. He initiates the standing himself and holds for much longer periods of times without letting his legs buckle. 

Over the past year we have had setbacks, but we have also had huge progress! I can't wait to see how far we will come in the next 365 days, and I'm looking forward to every step along the way! 

We've discovered that Drake LoVes the new Budweiser commercial (or at least the music)! 

Practicing standing in therapy!

Great job!

Just watching a little Bubble Guppies with bubba!

She loves her baby doll, and she is really good at taking car of her! Although, she did tell me that her baby doll had a poopy diaper and she handed her to me...she must have learned that from daddy!

Friday night fun!!!

Baby shower time! Peddle car is toddler approved!✔️

All dressed up! 

Tuesday, February 3, 2015

The Nights Are Long...

This time last week, we only had one nurse. We are thankful to have Lisa, who has been working overtime, but we still need more nurses. I am happy to report that we have our other day nurse position filled! We also have a night nurse beginning on Feb 12th! However, in the mean time...we have been without a night nurse. The nights are actually really easy...that is if you are not awake all day long, too. We are making it work and catching sleep when we can. I just know with a little more time we will have the perfect set of nurses in place for our little man! 

The Home Medical Equipment Company that brought out the demo gait trainer told us we could borrow it for a week. As of today they still have not picked it up, and we couldn't be happier about their oversight! We know that eventually they will have to come and get it to try with another kiddo, but in the meantime...we plan to get all the use we can! I am amazed at how much Drake improves with it each and every day! I really think I may literally cry when they come to take it away. Drake's has been ordered, but as I have mentioned before it will take many, many months of dragging through red tape before his is finally approved. We will pray for a speedy process! 

Kennedy and I made a day trip to McKinney on Saturday to celebrate two very special "soon to be" baby boys! First, was a baby shower for my sister-in-law who is due with my little nephew on April 5th. Next, we grabbed a quick lunch with family before attending our second shower of the day. Shower number two was for Kennedy's primary nurse from the NICU. We made some wonderful and lasting friendships with our NICU staff, and we love celebrating the happies in their lives! I am over the moon excited for both of these couples! 
Kennedy has thrown us for loop over the past few days. She has thrown up one time each day since Thursday. It is puzzling to her doctor, too. She shows absolutely no other signs or symptoms. She also doesn't act like she feels bad and it hasn't slowed her down a bit. She is still eating and drinking; therefore, we are monitoring her over the next couple of weeks. If her vomiting continues, we will need to take her in to see the doctor. We are praying this with resolve itself very soon! 

Our little nurse checking Drake's O2 level 

He was a good sport about it!

He is doing so good!!!

Who needs pants? 

The point of this chaotic picture is that Drake started next to Kennedy and moved across the room in his gait trainer all on his very own!!!! This is such a BIG deal!!! So proud!!!

All that moving wore this little guy plum out!

Getting ready for the shower. She thinks she's a big girl!

Our little diva at the shower on Saturday! 

Oh, this girl!