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