Wednesday, April 9, 2014

Finding Our Niche

Being home has been wonderful and quite an adjustment all at the same time. Our 1st night was definitely the hardest, and each day that has followed has been a little easier. Brian and I took turns with the night shifts over the weekend and very little sleep was accomplished by the two of us. We quickly understood why 24hr nursing is recommended by the doctors. It is completely exhausting trying to take care of everything on our own, especially with another toddler in tow.

We met with 3 nurses interested in joining our Care Team for Drake. Two would cover night shifts and 1 would be day shifts Fri-Sun. Unfortunately, 2/3 found Drake's care too overwhelming and opted out. This was very saddening to us, but we are excited about the one nurse willing to care for Drake Thurs-Sun nights. She was our favorite from our meet and greet! She seems wonderful already and we are excited for her to start this week! 

Lisa is, not surprisingly, going above and beyond to help us out during this transitional time. Because of the trach, vent, and excess of equipment, it is impossible for me to continue our weekly travels back and forth to Dallas alone. Because of this, Lisa is staying with us Mon-Thurs and doing extra shifts. So for now, Lisa works 16hr shifts on Mon-Thurs, our new nurse works 12hr nights on Thurs-Sun, and Brian and I are providing all of his additional care. The nursing agency is working diligently to find qualified nurses for Drake's additional hours. We hope and pray each of our new nurses are a good fit with our family.

Drake has been extremely happy being home! At the hospital, he would fuss or cry if we were not constantly holding him, but at home he is content just to be in the mix of daily life. We set him up in our living room so that he doesn't miss out on anything. Also, he and Kennedy share a room, and we knew she would never sleep if there was a nurse in there by his bedside. We have set up all of his equipment; vent, humidifier, oxygen concentrator, suction machine, back up suction machine, emergency bag, nebulizor, and IPV machine. Brian also purchased some shelving for all of his other various medical needs and excess supplies. We have turned our coffee table into a surface for tummy time and trach care (he can not be on the floor because he must remain higher than the water reservoir attached to his circuit). This reservoir collects the condensation in the tubing produced by the humidifier and must be emptied every 2hrs. Otherwise water will build up in the tubing and flood into his lungs. 

While Kennedy was napping today, Lisa and I successfully gave Drake a bath in the bathtub! This was no small feat...and definitely a two person job. First, we disconnected his humidifier and added an HME (Heat Moisture Exchanger) to his trach. In essence this does the same job as the humidifier. It's like wearing a neck guard while skiing or in the cold. While breathing in and out, the material over your face gets damp. The HME does the same thing for provides the needed moisture. We breathe through our nose and/or mouth which provide the moisture needed for our lungs. With a trach, the nose & mouth are bypassed; therefore, moisture must be added. Then we disconnected his concentrator and hooked up portable oxygen. His ventilator ran on backup battery support, and Lisa wheeled this equipment down the hallway while I was carrying Drake. He seemed to love his new bath chair in the tub! 

Kennedy has been amazing with all of this! She loves being home as an entire family, and she is sweet and observant with Drake and his needs. She doesn't mess with any of his equipment, and she is alerted to the alarms, too. It is strange coming home after a two month hiatus. The clothes I had in their drawers were not only the wrong size now but also the wrong season. Kennedy has definitely grown and can now reach things that were previously out of her reach. She has also perfected climbing the dog steps that Harlee uses to climb onto our bed. She thinks it's a fun game! Although while climbing them today, she heard Drake's vent alarm and immediately stopped. She said, "Uh-oh!" Then she quickly got down and took off running into the living-room shouting, "Bubba! Bubba! Bubba!" until she reached him and confirmed that he was indeed alright. Sometimes she makes me wonder...Is she really only 21 months old? 

Our ambulance ride home!

All set up in the living room!

New shelves full of supplies.

1st bath in his new bath chair!

Tummy time!

Snuggle time with Daddy!

Kennedy and I met my cousin, Kelley, in Canton to pick up Drake's pulse-oximeter charger that I forgot  at Gran & Poppy's. Kennedy enjoyed her sugar cookie from Paul Michael's! So thankful for supportive family members who go above and beyond!!! 

Oh, how I have missed mornings with this sweet girl!!!

Climbing the dog stairs to mommy & daddy's bed! 

She is literally into everything! 

Helping with bubba!

So happy to be home!!!

FaceTime with Uncle Aaron, Aunt Mere, cousin Jacob & baby cousin Elizabeth! We miss them! 


  1. you two are super parents may god bless you and your family also allow drake good health and family time you all must be so tired god has a special place for your family hang in there and bless the care givers that assist you

  2. My wife sent me this link to read. Our son, Knox, will be heading to Baylor OCH next Tuesday and we are excited and nervous all at once. Your blog has made me feel a little more at ease to see that there are other families out there going through the same things and making the best of it! There are many days I feel completely helpless for my son and then I see this and it reminds me that the only thing we can do is enjoy our child every day and be thankful. God Bless you and your family and many prayers!

  3. Thank you so much for your kind words, and I'm glad that Knox will begin his OCH journey soon! We will be praying for your family.