4/28/2021

We are so used to going through the movements of what is takes to care for Holden that it isn’t difficult to overlook what we do every day. Holden is complete one on one care meaning he needs a person there to care for him at all times. This includes both the caring aspect as well as observing him. The observing part is making sure he is positioned correctly, monitoring for seizures and observing for changes in mood, color, temperature and heart rate as these are signs that his starting to storm. A standard day with Holden includes multiple diaper and outfit changes. Both for himself and for who ever is caring for him. His little thighs are so skinny that they often create gaps along the diaper and then pee gets out. We give medications through his G-tube seven times a day. Holden also needs enemas every other day which is something that we are currently struggling to accept. He receives four tube feeds throughout the day and they run for about 1.25 hours to 1.5 hours. During this time he has to be monitored to make sure he doesn’t aspirate. If this happens, and it frequently does, then we have to pause his feed or decrease the rate which makes it take longer to finish. Since Holden cannot eat or drink he requires very frequent oral care to keep his mouth and lips from getting dry. Some people might assume that since he is wheelchair bound his sits in his chair contently, but this is not the case. Holden is very good at letting you know when he doesn’t like where he is. He will arch his way out of whatever he is in (wheelchair, swing, special seating or someones lap) and he will vocalize his unhappiness. He does like to be on the floor and move about freely but this is something he hasn’t be able to enjoy as often. Since he has reflux and delayed gastric emptying, being flat causes him to spit up and increases his risk of aspirating. Holden weighs about 33 lbs. It doesn’t sound like that much but imagine carrying that weight around all day. It is very taxing on your body to move that weight around from bed to chair, chair to lap, lap to swing, swing to arms, arms to floor and etc. He also is pretty much dead weight so it’s not like he’s helping you out in any way. Holden likes to go from a limp noodle to throwing himself backwards at the most unexpected moments which is both scary and physically draining to accommodate his change in movement. One of Holden’s favorite things to do is continuously throw his head to the side of his head rest requiring you to constantly put his head back for him. Imagine putting him in his chair and thinking you are going to peacefully enjoy a hot cup of coffee only to have to lean forward over and over again to fix his head. (Literally I did this about 30 times today during my afternoon cup) On top of all of this, Holden’s health is very unpredictable. There are days where his mood requires the interventions of additional medications. Days when seizures are uncontrolled and require more meds as well as other interventions. Days when he can’t pee and requires catheterizations. Days when he all of a sudden falls ill and requires frequent nurse visits, continuous heart/oxygen monitoring, oxygen use, breathing treatments. Nights we lose sleep since these machines start beeping during the night when he takes off his oxygen or monitor. Days when he’s just not acting right and we know something is about to show it’s ugly self. There are many occasions when Holden should be in the hospital but we are able to treat him at home since his hospice team can oversee his care and can provide the needed equipment. We are so thankful for this service as it allows our family to stay together.