Tuesday, November 25, 2014
Tuesday, November 18, 2014
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
Tuesday, November 11, 2014
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!