Morning Routine
6/8/2022
We have been very busy with Holden the last several months. He seems to be sick more frequently and has been having more severe symptoms as well. It is much different than what his “typical sick care” has been thus far in his life. I’m just checking in real quick (since it’s been quite a gap between posts again) and wanted to share some videos of what mornings are like with Holden. I edited and sped up all of the videos since this routine typically takes about an hour. I hope you enjoy this little peek into our lives.
The following video is of me preparing Holden’s morning medications and his feed for the day. This set of meds includes sabril, lamictal, cogentin, multivitamin, taurine, briviact, clonidine, senokot, gabapentin, coenzyme Q10, riboflavin, levocarnitine, and thorazine. Since he was ill during this time, it also includes cuvposa, a steroid, and an antibiotic.
In this video I am getting Holden up for the morning, changing his clothes and diaper and placing him into his wheelchair. He was on continuous oxygen monitoring due to needing oxygen throughout his illness but on this day we were trialing him on room air.
Here, Holden is receiving his breathing treatment and chest percussion therapy. This is a nifty little device that helps clear his airway by dislodging mucus so he can cough it out. For a video on how this works click here. In the background you will see me moving about, I’m starting laundry and changing his sheets as he commonly wets through his double diapers. I also continually check on him to make sure he is okay and that the breathing treatment mask isn’t falling off due to the vibrations of the vest. Towards the end of the video I sit with him because he is vocalizing and trying to talk.
Lastly, this video shows me giving his medications through his G-tube and starting his first tube feed of the day. He receives four bolus feeds throughout the day. I also wash his face and brush his teeth during this time. You will also notice me suctioning him intermittently to clear any secretions in his mouth. After all of that is completed, we get comfortable and settle in for some snuggles.