Tuesday, November 25, 2014

Mystery Illnesses

Drake is currently in the PICU at Medical City Children's Hospital in Dallas. He started needing increased suctioning on Sunday night and requiring oxygen support. He did pretty well during the night while he was sleeping, but his breathing was shallow and labored early Monday morning. I contacted our pulmonologist through the after hours line and then we headed to Medical City. We spent most of Monday in an ER room, and he was admitted to the PICU on Monday evening. 

He is currently receiving antibiotics, steroids, breathing treatments every 3hrs, and some of his regular medications have been increased along with his vent settings. He was on 3L of oxygen all day Monday, but he was able to be weaned down to 2L this morning and additionally down to 1L tonight. Praying he can maintain his sats on 1L throughout the night. 

So far every test that has been run searching for infections has come back negative. We were really surprised that his trach culture has not grown anything yet. Thick, yellow, foal smelling secretions are typically a tell tale sign of infection. Even though they haven't been able to figure out the cause of Drake's illness, we are just thankful the steps and treatments that have been taken are showing improvements in his condition. Our little Drake has been the best little trooper through everything...even IV lines and blood drawls. 

Last week I took Kennedy to see our pediatrician about a small place on her face (one red dot). We thought it must be an insect bite that just was not going away. We got a topical ointment, but on Saturday her little cheek looked much worse. Brian and I took her to the Direct Care clinic in Tyler. The doctor was not sure what it was but gave us a prescription for an oral antibiotic. On Sunday it was even worse! I was supposed to take her to our pediatrician 1st thing Monday morning, but those plans changed when Drake needed to go to Dallas. Mimi (Gran) to the rescue! Mimi picked Kennedy up from us at Medical City and took her to Jacob and Elizabeth's pediatrician. From there, they were sent to see a dermatologist. Finally, the diagnosis...contact dermatitis. Basically severe eczema from an allergic reaction to something. She started a steroid cream yesterday and looks a million times better today! 

Kennedy had another special treat today...she spent the day with my brother Uncle Mikey (Uncle Money as Kennedy says) and Aunt Jamie! I absolutely loved receiving pictures of their fun day! I love that Kennedy is getting to spend time with my family; I only wish it were under better circumstances. 

We are hopeful the doctors will feel that Drake is ready to go home tomorrow since we have 24hr nursing care and the equipment they are using now is the same as our equipment at home. However, we don't want to get our hopes up too high and be disappointed. If we have to spend our Thanksgiving together in the PICU, that will be ok...at least we will be together! 

Tonight...starting to show that handsome smile again!

Love this little guy!

Fun with Aunt Jamie & Uncle Mikey! Her cheek looks SO much better!

Just hanging out in the PICU

Snuggles with Mimi! Thanks for this early morning pic, Poppy!

Progression of baby girl's cheek :(

Uncle Matt reading her a book over the weekend!

Our 1st night in the PICU

Tuesday, November 18, 2014

Here We Go Again...

Over the weekend, I was 6 miles into a 10 mile run when Drake’s nurse began texting and calling me with a trach emergency. Brian and Kennedy were out grocery shopping so I picked up the pace...running the fastest I have ever RUN! Drake had gotten his trach out and she could not get the new trach to go in. This was not her fault; the diameter on the new trachs are too large. Luckily, we still have some older trachs that fit and our problem was solved! He is all better now! What a relief! 
Today’s been a busy day, which began bright and early prepping for vent clinic in Dallas. Lisa and I were bundled, but still cold, while we were loading the car in the dark early morning hours. MiMi met us enroute to pick up the girls and take them to her house to play with Jacob and Elizabeth.  At vent clinic, we brought up our concerns about the new trachs, and brought an example of each so we could show them exactly what we were talking about. They agreed that this is a problem, and are working on ordering Drake a new trach; however, they said this will be a trial and error process until they can find a new one that will work. They are also sending an order for medical necessity stating that Drake needs more trach ties because one per day is not working for him.  We showed them pictures and told them about the “new” trach chain we created after researching alternatives. The chain only works when he is not connected to the vent; therefore, the trach ties are still a necessity. Our pulmonologist agreed that the trach chain is a great way to let his neck breathe, and said that the trach chains has been around since he was a child (I’m not saying he’s old, but he’s not young). 

Drake's chest X-Ray looked really great today, and his blood gas was perfect! That is the best news we could possibly ask for during our visit! We will be increasing his time off of the vent (as tolerated) until he reaches 6hrs twice each day (12hrs total...half of a day)!!! Our next vent clinic isn't until the middle of February. That was a shock! It's a good thing because he is doing great, but also a scary thing at the same time. I'm pretty sure my jaw hit the ground at the same time as Lisa's when they told us our next visit wouldn't be until February. 
After vent clinic, we headed to meet the girls at Mimi & Poppy's. One of our wonderful nurses from Presby Dallas came to visit! We always love seeing our sweet friends who were with us from the very beginning in our scariest days. 
Yesterday we received the unfortunate news that one of our nurses will no longer be able to work with us due to health related issues. We now have an opening for an night nurse 3 days a week. If anyone knows a qualified candidate in our area, we love would love to hear about them! Must love working with a precious little boy! :) 

Link to the CBS news story Walking By Faith

Waiting to see the doctor at vent clinic!
Daddy making Drakey laugh!
Pushing mommy through the house!
Love these little chompers!
Kennedy agreed to "hold" Harper! Gotta love Harper's "is this kid old enough to be holding me?"look
Snowman cookie from Poppy!
Gotta have a strawberry frapp to wash it down!
Somebody loves the new slippers daddy got her today!!!

Tuesday, November 11, 2014

Walking by Faith

We were contacted several months back by our local news station, CBS 19, about being featured in their segment, “Walking by Faith.” We were surprised and delighted that they wanted to do a story about our little family. The title itself sums up our journey...beginning with day one we have and continue to walk by our faith. It’s what helps us always find the positive in every situation. Since that initial contact, the news personnel have been out to our house twice, and our story will air tomorrow night at 10pm! I will share a link to our story on their Facebook page after it airs.

Before the cold weather hit this morning, we soaked in the last bit of nice weather yesterday afternoon. Drake’s strength and head control shined on his tricycle. Now if only he and Kennedy could both reach the peddles! I think daddy may be able to rig something up before our next ride! It warms my heart to be outside enjoying the time with both of my kiddos!

Over the weekend, Brian, Kennedy & I made a day trip to Dallas to celebrate cousin Jacob’s 2nd birthday! It would have been nice for Drake to join us, but all the excitement and people would have been too overwhelming for him. He prefers much calmer settings.

Kennedy has been having fun helping me out in the kitchen. She loves to help! She ends up making a HUGE mess, but it is all well worth it! I need to learn to mop the floors after we cook instead of before! She also had a fun neighborhood outing with Daddy on Sunday. They walked down to the water and played on the playground. Apparently, Daddy lets her slide all the way down the tall slide and spins the merry-go-round much faster! I can’t say that I am surprised! 

Giving bubba a hug!!!

Check out this head control when we 1st started!!!

Let's ride!

Swinging on a big kid swing at Jacob's party!

Driving Jacob's new jeep!!! She's a crazy driver!

Sliding with daddy!

Sliding with mommy!

My little Sous-Chef!

Riding her train with daddy! 

Tuesday, November 4, 2014

Daddy’s BACK!!!

We were all very excited to see Daddy when he arrived back home on Sunday! His timing was pretty good, too, because it was almost nap time for Kennedy and he was exhausted from their 24hr drive back home. Drake even took a nap, too! 

Being able to have Drake off of the vent with his PMV (Passy Muir Valve) has allowed us a little more freedom around the house. I can pick him up and take him into another room without the excess equipment...although, this is getting more difficult with him growing! He weighs over 30#!!! Such a BIG boy! With the nice weather we have been having (today excluded), we took Drake outside on the back patio in his stander. He seemed to enjoy the change of environment. 

Right now we are battling a little skin breakdown on Drake’s neck. It’s difficult to manage because he has trach ties around his neck at all times. The only break his little neck gets is during trach care when we clean his neck and change out the ties (one of us holds his trach in place during this time). We’ve tried bandaids, but that didn’t work. We are currently using a thin barrier film over the problem areas and praying this will allow healing to occur.

We had a trach malfunction yesterday. The cuff which prevents him from possibly aspirating was not holding saline; therefore, it was not serving its purpose. We were afraid of where the saline was going (possibly into his lungs...YIKES!). After a trach change, the leak was discovered and it was not in a place that put his health in any danger. Needless to say that trach was not sterilized, but rather thrown directly into the trash can. 

Kennedy is such a character and her laugh is absolutely contagious! I love hearing her sweet laugh running through the house! She did the cutest thing over the weekend. When I put her to bed for the night, I was extremely tired from a long day and running 15.5mi with Uncle Aaron. When we said her prayers, I could not remember what I was forgetting. Kennedy said, “Papa. Papa, mama!” Oh yeah, yes, we always pray for papa. Good job, Kennedy! Then she also reminded me about Yea-Yea (Harlee) who got stung by something and is on antibiotics from our vet. It may be time for Kennedy to start leading our bedtime prayers. 

Drake has been doing great with his therapies...he does his best when he has slept the night before. Getting decent sleep for him nightly is still an ongoing battle...we are thankful for our night nurses who fight that ongoing struggle with him!  

We enjoyed a fun play date with our little friend, Grace! We always have such a fun time when Grace and her mommy come for a visit! It’s good for the little ones and good for the mommies, too! 

Halloween fun!

Drake & Grace!

Outside in his stander!

Checking out the tall pine trees!

Thursday night at the Gilstrap house = Baby Obstacle Course! 

Tasting a little apple...just a little flavor on his tongue. 

Frozen watching Frozen! 

One of the many duck pictures daddy sent us! And yes...we have already eaten duck since he returned. Duck chili...and it was really good! 

Bath time fun!


Lunch with friends and a new headband...thank you, Eleni! 

Cousins Elizabeth & Jacob with Kennedy! Jacob isn't quite two yet, but he is that much taller than Kennedy! He's a big boy! 

When he sleeps, he sleeps! Absolutely precious!!!