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!