I have only attempted to leave the house once. Pretty much need a suitcase to haul all of the stuff Braxton needs to go anywhere. There is the typical diaper bag (with everything needed for a messy poopy baby, plus tape, syringes of different sizes, emergency meds, emergency gtube, emergency apple juice), his oxygen tank and mask, his suction machine (along with catheters and water), feeding pump bag (with pump, feeding bags, and charger), and finally a cold bag (with his ketogenic formula, meds, and flush water). I still have to figure out how I’m going to be warming his formula on the go, probably also have to pack a snap warmer pack if I am not somewhere where I can access hot water.
One of the most common questions we are asked is what is our day like. In many ways our day is like any other parents. Braxton usually falls asleep around midnight and gets up around 8:00, usually with a couple diaper changes or repositioning needed in the night. We get up early to get everything rolling and ready for the day. Our day is mostly made up of feeding, diapering, and entertaining Braxton, with some ‘special needs baby’ add-ons.
Feeding: Braxton’s meals are every three hours 6am to 6pm, then he gets a slow “continuous” feed from 9pm to 3am so we can get a bit of rest. Every morning we make his daily feed. It’s a mixture of ketocal formula, water, oils, beneprotein powder, and simaliac advance powder. We have to measure or weigh each ingredient, mix, and refrigerate the big jugfull. Each day time feed is currently 110ml of this ketogentic mixture and he gets 220ml over his nighttime feed. We warm up the feed, add two supplements/vitamins to each feed (there is a whole variety of these he needs since the diet isn’t complete nutrition), pour the feed into a feeding bag, hook the bag into a pump, flush Braxton’s gtube with 10ml of water, attach the bag’s hose to Braxton’s gtube, program the pump and turn it on. His feeds take an hour to empty the bag, then we detach all the parts, flush the gtube again, clean the feeding bag, then have a two hour break before starting all over again.
Diapers: I know all parents have the joy of dealing with wet and poopy diapers. Because of the frequency of Braxton’s feeds, especially the overnight feed, I think we have more wet diapers than typical. At least it feels like it because Braxton cannot stand a wet diaper. I blame this on the fact that we have to check his urine for its level of ketones, and so we keep cotton balls in his diaper, which when wet we press onto a test strip which changes color to indicate how well his diet is working. The cotton balls are understandably cold and uncomfortable when wet. We also record all of Braxton’s bowl movements for his dietician. We were weighing all of his diapers, but luckily we no longer have to do that. A fun tidbit: Braxton cannot use most bum wipes because of their sugar/glycerin which is prohibited on his diet.
Entertaining: Probably the most frustrating thing about caring for Braxton right now is that everything has to be done TO him. He doesn’t have the ability to make the connections and developments most children learn by just observing and exploring their environment. Instead we have to bring the environment to him. We try to help him experience different things by rubbing different textures on his skin, letting him listen to tons of music and always using auditory cues, moving his body for him into new positions, bringing different smells to his nose. The reality is after Brock and I complete his feeds and diapering every couple hours we also need to do some of our own eating and self-care, and in those times Braxton is often left on his back or in his chair like a blob. Because of his vision impairment we can’t use the old standbys of TV or a mobile to entertain in our absence. That’s where I could really use help, someone to either get his feeds ready and change diapers so I can concentrate on his entertainment/development or someone who can spend time stimulating and exercising him while I care of his basic needs. He is getting heavy for me to carry so I also need to start getting some exercise so I can continue to hold all of his weight each day for the foreseeable future. We continue to do physiotherapy and vision therapy, but once a week isn’t enough. And that’s where I start getting stressed that there aren’t enough hours in the day, and many days I am just too tired and sore, to do the development work Braxton needs daily.
All the other stuff: Coming home from the hospital Braxton is much more complex than before. Meaning his needs are extensive, risk of death high, and has problems in many areas. Braxton has central apnea, meaning his brain doesn’t always tell his body to breath. This happens most often when he is sleeping, his oxygen levels will drastically drop. It also happens when he is angry or crying. Like other kids he screams out all his air and holds his breath, but he doesn’t always get the message that he is out of air and needs to breathe in. Therefore we have to have oxygen on him when we travel (if he’s sleeping or crying in the back seat I can’t help him), always when he sleeps, and as needed when he cries. Right now this is Braxton’s biggest risk, each night we have to go to sleep with the knowledge he might stop breathing in his sleep. Braxton also has little control of his swallowing, so we can no longer put anything in his mouth. That means no soothers or drinks. Occasionally Braxton makes more saliva than he can control, particularly if he is sucking a blanket or crying, and then we have to suction his mouth so that the saliva doesn’t end up in his lungs. Braxton still struggles with three types of seizures (infantile spasms, generalized and focal seizures). We are eight days since a general or focal seizure so his diet is helping, but he still needs three medications, five times a day. Any seizure activity has to be recorded, along with his ketone levels, poops, any crying or throwing up, and weekly weight and length and emailed to his neuro dietitian on a weekly basis. This information helps her to adjust Braxton’s ketogenic diet for ratio of fats and calorie intake. Braxton has to be watched 24/7 because he needs rescue meds if he has a seizure longer than five minutes. We also have to fit gtube cleaning into our daily routine. So to sum up we have very full days back at home.