Today was another visit to vent clinic, so we headed to Dallas early this morning. Drake's appointment was long (3hrs) but it was also really great! The Pulmonologist was not the one that we usually see, but the nurse practitioner with him is the one we see at every vent clinic. She was amazed at how great Drake looks and is doing! She even asked for more information on the supplements he is taking! We are making some pretty big changes with him on vent settings and treatments. We are doing away with his backup rate, extending his breathing treatments from every 4hrs to every 6hrs, cutting one of his meds from twice each day to once, and adjusting his feeds! I have requesting to change his food, and they are checking with our DME company and our insurance. In his current food, the 2nd ingredient listed is corn syrup. The new food I've requested is whole food plant based. We've seen his improvements by adding supplements, and I believe this nutritious food will also make a difference.
Hayes loves sitting on the floor playing with his toys, and really he loves just being in the mix of everything! Kennedy had dance pictures this week and they did a little dancing in their recital costumes! She LOVED it!! She may not actually do the correct dance during the recital, but at least she will look cute on stage!
Today we were treated with a wonderful surprise on our way to vent clinic. One of our dear friends, and former nurses from Presby, was with Mimi when she met us to pick up Kennedy and Hayes! Our crazy journey has taken us down a path we could have never anticipated; however along the way our life has been impacted by some truly wonderful people we would have not known otherwise.