A Little Short-Handed

Every time something new is thrown our way, we adjust, establish a new “normal” and continue moving forward. Our new normal of 24hr nursing took some getting used to, but we did, and our new normal began. I even began keeping a precious 3 month old who belongs to some of our very best friends on Monday-Friday each week. This, too, was an adjustment, but things have really been going smoothly. However, the winds began to change and our nurses started dropping like flies! What was in the air? Why was everyone getting sick...including Brian...and me?! Brian continued working and stayed in McKinney with Gran and Poppy to allow his body time to heal (and not be contagious to us). I started taking various sinus medications and pumping my body full of vitamin C...Luckily, that worked! I certainly don’t have time to be sick!

Like I said, things were going pretty smoothly with 3 kiddos, 1 nurse and me. Then it happened...our “normal” daily routine was interrupted by sickness. It then became 3 kiddos and just me...YIKES! I knew I had to figure out the balance of Drake’s feeding schedule, meds, breathing treatments (every 4hrs), CPT vest (2x per day), and the 3 month olds schedule...plus, Kennedy! Drake had 2 therapies, a vent check-off and a delivery all planned for that day, too. Going into our day I knew at some point all three kiddos would probably get upset with me, and I was ok with that. Somehow I think they knew that I had my hands full and they were trying to cut me some slack. We did it! We survived! I was definitely exhausted, but proved to myself that I could do it...and keep my sanity! Well…Brian may argue with that last statement :)

On Saturday, Kennedy and I spent a girls day with a quick trip to McKinney for a special birthday party! One of my dear friends was in town from Connecticut with her birthday tots...one turning 2 and the other turning 3. It was fun for all of us to get together with our kids and celebrate! It is a comforting feeling to be back in my hometown and catch up with old friends...not that we are old...we’ve just been friends for a very long time! Of course we visited with Gran, Poppy and the rest of our family while we were in town, too!  

We spent all of Sunday with Daddy since we missed him so much on Saturday! We always enjoy making the most of our weekend time together! Sunday night we had our night nurse out sick, and once again there were not any sub nurses. But Lisa (of course) stepped up and helped us out. She and I tag-teamed the night shift and both managed to get some sleep..not a full nights sleep, but enough to function. We are thankful that God has placed such wonderful people into our lives who treat us like more than a job...like family!

New CPT vest! His chubby little cheeks look so cute with the vibrations of the vest!

Snacks at the pool!

Sweet girl!

Smiley! 

Enjoying my morning coffee in the playhouse! Perfect start to my day :)

Wearing his CPT wrap vest. The camo one is still a little too big.

Kennedy loves having baby Harper with us during the days!

Baby Harper loves watching Kennedy! Clearly Best Friends! 

Changing her baby doll's diaper...so sweet!

Waiting at the doctor's office today for Drake's new AFO (Ankle-Foot Orthosis) leg braces! We'll have some pictures next week. 

Minor Set-Back

I know that last week I said that I did not want to jinx things...well, that was for good reason. Our little man had a minor setback over the weekend. He began showing signs of difficulty breathing and began requiring oxygen support (which he hasn’t needed in well over a month). This all began in the wee morning hours on Sunday. As you can imagine, the weekends are not the easiest time to get in touch with his doctors. It isn't impossible, but is not easy either. I knew in order to avoid another hospital stay, action needed to be taken quickly! I looked back at my calendar for the date of his last visit to Medical City Children’s Hospital and the nursing notes from that date. This gave me the information for the needed adjustments to his ventilator to add the balanced support his little lungs were needing. His nurse mentioned an odor coming from his trach and I saw yellow secretions when I disconnected from the vent to check. We immediately started him on inhalant antibiotics that we now keep on hand for these type of emergencies. Trach infections are extremely common!  

I called the after hours answering service and left a message. Once I spoke to a live person and let them know what was going on, our pulmonologist was extremely quick to return my call. I filled him in on the details of what was going on with Drake and the steps that I had already taken. I could hear the smile on his face when he said, “I’m in agreement with everything you are doing. Good job, Dr. Gilstrap! Keep me posted.” I had to laugh when he said that. I was simply using my experiences to do what I thought was best prior to consulting with the experts. I’m glad to know that my instincts were correct!

The good news: Drake is showing signs of improvements and still is full of energy! He is very active and still busy with full therapies.

The bad news: He is requiring 1L of oxygen support (which we hope to wean down more tomorrow). We had to postpone his fitting for his prosthetics today because he is not up to traveling yet, and oxygen tanks empty very quickly while running at 1L.

While this is not ideal, he is getting better and we are thankful to be at home and not in a hospital.  

Kennedy...Oh, Miss Kennedy! She’s a HOT mess and we adore her! She is saying everything imaginable and her sentences are becoming more complex. She surprises us daily and continuously makes us laugh. After being gone for several days, daddy definitely noticed a HUGE difference!

Working on getting better! 

On he mend! 

Loving her playhouse! Thank you Gran, Poppy, Uncle Mikey & Uncle Aaron!!!!

Playhouse phone included! 

Swimming fun at our friends/neighbors new pool! 

Watching Bubble Guppies with Daddy! 

Playhouse fun! 

We loved having Daddy home on a Tuesday night!!! What an unexpected surprise! Counting down the nights until we are all together again this weekend! 

Don't Want to Jinx Things...

Drake's vent weaning is going...(gasp)dare I say...amazingly well!!! He is tolerating it even better than we expected! He is now up to 3hrs twice each day off of the vent completely. This allows us to take him easily from room to room...and he even had an adventure outside! I had high hopes that with a little padded support Drake would be able to swing, and it worked! He was patient with us while we did our best to adjust the buckle straps for him. That turned out to be much harder and took a lot longer than I had anticipated. Tightening the straps was easy, but loosening them was quite challenging. 

All of his home therapist this week have commented on his improved job and also on his improved tone. By "tone" I am referring to muscle tone. Every doctor who evaluates him is always checking the degree of muscle tension or resistance he shows while relaxed and in response to stretching. Some kids with special needs have high tone (their limbs remain tight and contracted) and others have low tone (completely limp). Drake's muscle tone varies. Sometimes it is high and other times it is low. I contribute most of his improved tone to the daily exercises that we do with his snowdrop program. Clearly what we are doing is helping, and that is a wonderful feeling! 

Friday night Brian and I were able to have a night out in Dallas with some dear friends. We are very thankful to Aunt Meredith, Uncle Aaron and their two kiddos for coming all the way to Tyler to take care of Drake and Kennedy. Drake's wonderful nurses were here, too. We had a fun night out but were excited to be home again with our little tots! On Saturday we took my sister's family down to experience some lake living. Jacob wasn't sure at first, but quickly decided he was a water baby, too! Our only wish is that they lived closer so that we could do this more often! 

1st time in the swing!

Love, Love, Love when he's in a giggly mood!

Hanging out with cousin Jacob!

Toddler fun in the house!

Mommy & Daddy's night out! We even ran into one of our favorite NICU nurses! It was wonderful seeing her again!!!

Lake fun with Daddy!

Practicing swimming with mommy!

Sitting on the dock with daddy!

Snuggled up with her "yaw-yaw" (Harlee). He secretly loves her!

Day By Day

We still take life day by day. Planning for anything is almost impossible, because we have learned those plans are easily foiled. Drake can go from having coarse lungs to clear lungs in no time flat; however, it can flip the other direction from clear to coarse in a snap as well. Out of the blue last week, he began battling tummy issues...This was definitely a new challenge! He took a drastic change from his usual constipation to loose bowels. I stayed in close contact with his pediatrician throughout the week as we tried to determine the cause of his issue. He never acted like anything was wrong, but the problem continued. I took him into see the doctor on Friday where she ran a full panel of tests, bloodwork, and cultures. Everything came back normal. “In Normal Ranges”...How is this possible? She switched him to soy feeds and we decided to lengthen the time he receives his feeds over an hour. I actually had to go out to the garage to get his kangaroo feeding pump because it has been so long since we have used it, and it required quite a bit of cleaning! So far he seems to be tolerating this change very nicely. Even Brian was pleasantly surprised when we arrived back from the pediatrician and it was not going to involve another hospital stay.

Just the thought of another unknown issue was enough to make me feel uneasy. On my drive back from the grocery store after another Pedialyte run, I drove just past our house down to the lake. I was only down there for a few minutes, but it was a few minutes of me time that I needed. I prayed for healing. I prayed for answers. I prayed for the health of our little boy.

We traveled to Dallas today for Vent Clinic! Drake received an outstanding report...kind of a “What were you so worried about, mama?” His lung x-rays looked the best I have ever seen! We are going to be increasing his time off of the vent, as long as he tolerates it well. Also, they will be scheduling him soon for a sleep study to ensure that he does not have any sleep apnea. He has been approved for a Passy Muir Valve, which will allow him to start making noises (hopefully) and it will bring back his sense of smell! This valve can only be used while he is off of the vent and his trach cuff is deflated. I’m sure that I will have more to report about this in the near future!

Brian and I took Kennedy to a family reunion over the weekend with Brian’s grandmother’s side of the family. All of the needed elements for a successful family reunion were in place...Food, Family & Fun! I always enjoy seeing the friendly smiles and familiar faces at every reunion! They have all made me feel like family since day one. Kennedy absolutely LOVED all of the other children who were there!  After the reunion, Kennedy even found a chair fit for a little kid at Great-Grandma & Great-Grandpa’s house! She found lots of other things within reach that were not for toddlers, too!  

First time at Daddy's softball game!

Full of laughs!

Love this boy!!!

Kennedy checking out a new toy at Micah's birthday party!

Candy from the piñata 

Found a kid chair at Great-Grandma & Great-Grandpa's! 

Snoozin' on mommy!