Episodes

By "episodes" I wish that I was referring to our favorite tv show, but unfortunately I am not. Over the weekend, which we survived solo...no nursing, Drake had some allergy issues which caused some extreme desatting episodes. We had to use the ambu-bag a few times, increased his oxygen support, and Brian "MacGyvered" a way to bleed oxygen in during his breathing treatments. He had another episode on Monday at the end of his speech therapy and the beginning of his physical therapy. This caused quite a scare for his two new therapist, and I even received a text checking on him today. The good news is...he is doing much better today! We have weaned his oxygen support down considerably, and he has been episode free for over 24hrs!!! 

Kennedy had a BIG weekend! She attended a baby shower for a dear friend of ours on Saturday morning. It was clear that she was overwhelmed when we entered the party because she was literally glued to me. I can't blame her...we haven't been able to get out much, and this was definitely out of her element. After the party guest cleared out, I was able to pry off my little spider monkey and she had some fun with our friends. On Monday, Daddy took off work to watch her while I went to the dentist. The three of us also ran some errands and went out to eat together for the very 1st time!!! This was a milestone for us and I think it went really well! 

Thursday morning we have our 1st outing since the ambulance delivered us home on April 4th. Drake and Kennedy have their 1st dentist appointment, and this will be a good trial run before our trip to the vent clinic in Dallas next week. We are beyond thankful for the two nurses that we have, and we are looking forward to adding a couple more to our "Care Team" very soon! 

I love how sweet she is with him and the obvious connection they have with each other.

Snuggle time!

I am in love with all of the faces he makes!!!

Napping on tummy time.

Shower fun! 

Celebrating our friend & her soon-to-be little one with all of our wonderful friends from our neighborhood!!! Kennedy is obviously thrilled to be in the picture with us. 

A day full of adventures with mommy & daddy! I think after seeing her excitement at Petsmart, daddy may be ready to take her to the zoo! 

Trying out bubba's cool chair! She actually climbed up into it by herself and was trying to fasten the vest. 

Tutu fun!

The only way to iPad. 

Like father, like daughter :) 

Standing Tall

Drake's stander is in and we have started using it already! He is still getting used to it, but he seems to enjoy being in an upright position. His new physical therapist came out yesterday for his evaluation and she gave us a "stander" goal to work toward of 1hr each day. Right now we are starting with 15min twice daily (as tolerated) and we will increase gradually until we reach 30min twice daily. His PT has also recommended that Drake get braces for his legs to use only while he is in his stander. This will take some pressure off of his ankles and joints. I spoke with our pediatrician this morning about getting that process started. His Speech evaluation went really well this morning, and she will be back tomorrow for his 1st session. 

We had a fun filled Easter Weekend with a visit from Gran, Poppy, Aunt Mere, Uncle Aaron, Jacob & Elizabeth! Daddy hung a swing in the backyard and Kennedy LOVED it!!! In fact, she wants to go outside and swing daily now. She seems to be a bit of a daredevil...the higher and faster the better. This scares mommy a little bit (heart skips a beat) so she prefers for daddy to push. She laughs and giggles the entire time! 

We had our 1st successful Easter Egg Hunt in the backyard. Kennedy and Jacob really got the hang of collecting eggs in their baskets. Jacob collected the same 5 eggs over and over. Each time after the 5th egg, he would dump his basket and start again. Kennedy had a full basket until Jacob switched with her...she was devastated. Luckily, a little cobbler and ice cream makes everything better!  

Standing Tall

High five, Bubba!

Finding his hand 

More tummy time!

Taking his drool rag.

His 1st time in his stander...she was so sweet with him! 

Riding around the house!

Swinging fun!!!

Weeeeeeeee!!!

Jacob wanted to help push!

A picture of 4 kiddos under age 2 is VERY difficult! Nurse Lisa said it was hilarious to watch :)

A full basket!

Jacob switching baskets.

Jacob dumping her basket.

Totally devastated! 

Snuggles with Gran!

Snuggles with Poppy! Worn out from too much fun! 

The Search Continues

 We are still working on finding home nurses to fill our empty slots. So far we have two nurses: Lisa is our day nurse (should be 4 days/week...she is above and beyond that for now) and a night nurse for 4 days/week. We have been really pleased with our new night nurse! If only we could clone her for the other 3 nights and clone Lisa for the other 3 days. Lisa and I experienced yet another Meet and Greet with a nurse who seemed eager to start only to find out from the agency that she wasn't willing to take on a trach and vent patient. So for now...Lisa, Brian and I take turns splitting up his night shifts and we continue our search for additional nurses. 

Drake is doing great and he is loving being home! We are still working on adjusting back to days and nights after his hospital stay, but that will improve with time. Even though he doesn't go outside, this crazy Texas weather still has an effect on his secretions; therefore, we are suctioning his trach more frequently. The good news is that we have been able to wean his oxygen support down from 1/2 liter to 1/3 liter. A small step, but progress none the less. He loves bath time in his bath chair, and he is tolerating his daily trach care nicely. 

Kennedy is a happy toddler who clearly loves and cares for her brother. As soon as she wakes up from the night or a nap, she asks for her bubba. She is eager to help with his care, too! We are allowing her to do little things that make her feel proud. She really is quite helpful...she even helps with the laundry! She stands in front of the dryer and I hand her clothes from the washing machine that she places in the dryer. She has also been having fun playing outside (when the weather is nice). 

With the help of our night nurse here with Drake inside, Brian and I were able to enjoy a crawfish boil out back with some of our close friends. This was such a treat!!! Kennedy, Brian and I even took a nice evening walk! Eventually we will be able to enjoy these luxuries with Drake, too...and we are looking forward to that day! 

A nice evening walk! 

"Look dada!" 

Just a little morning walk in her pjs.

Tummy Time!

This boy loves his tummy time! 

The 1st thing she wanted when she woke up was to climb into the pack and play with her bubba!

Bringing bubba toys

Sweet dreams!

Morning monkey kisses!

I'm not sleepy.

Just hanging out!

Outside fun!

We may need a bigger wagon :)

FaceTime with cousin Jacob! 

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 Drake...it 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!