A Day In My Life
I have a very hectic daily life that not only keeps me busy, but a few other people as well. Both of my parents work full time jobs. The comical thing about that is Mommy's job is what pays the health insurance, so without her working we could not afford to have health insurance. My Godmother, Aunt Kathy, takes care of me during the day while they are at work. Below is a brief glimpse into one of my days.
Midnight - 10 am- I am fed by my kangaroo feeding pump throughout the night. It is connected into my G Tube (so no more sleeping on my tummy). I also use my bi-pap machine that has oxygen attached. The bi-pap has a certain type of head gear that looks like a bonnet that goes behind my head and attaches to a nasal mask over my nose. I also have my pulse oxygen SAT machine connected to either my foot or toe throughout the night. Needless to say, I have tubing, cords and hoses coming from my little body going in different directions each night. I normally sleep on my back with my head to one side or the other. I keep mommy and daddy busy at night when my oxygen saturation levels go down and the alarms wake them in the middle of the night. They will suction my mouth and/or nose with the suction machine. There is a also a technique often used on me called "Chest Physical Therapy" aka CPT's in which I get tapped on my chest and back. This helps loosen up secretions and keep things moving so I will not develop pneumonia.
When I first get up in the morning aunt Kathy changes me out of my soaked pajamas since during the night I have extra secretions from my mouth with the use of the bi-pap machine. I get taken off my kangaroo feeding pump when it is finished, normally around 8-9 am. I get suctioned real well, and then have the cough asst machine used on me. That helps "cough" for me and bring up anything I might have in my lungs, and airways. It is still scary, because a mask goes over my nose and mouth and air is pushed in then pulled out at a certain pressure. This helps simulate a "cough" in which after three sessions of "in and out" I need to get suctioned to take away anything that comes up from being coughed. After getting coughed, and suctioned aunt Kathy normally brings me into the living room and I get put on my "Versa Forms". These are two pillow looking things that can have the air sucked out of them. So I can get put into a comfortable position and then it will "form" around me. I like to lie at a 45 degree angle with these so I can keep my head to the side or straight to watch a movie. Aunt Kathy needs to bring my SAT Pulse Oxygen machine into the living room after I get brought in, so I can be hooked back up to it. I am hooked up to it 24 hours a day, 7 days a week. Aunt Kathy normally puts Disney movie in for me to watch and we sit and watch TV until I fall asleep around 10 am for my nap.
I get fed during the day by "bolus feeding". What that mean is that a big plastic looking syringe is attached to my decompression feeding tube, and the food is put into it and goes right into my tummy. I get 5 feedings like that throughout the day at 2 1/2 ounces each time. I guess you can say I'm so used to getting fed that way during the day that sometimes I don't even wake up from my nap while getting fed. I guess I should consider myself lucky when I think of the fact of getting a full tummy while I dream my dreams.
My day is full of things that I know no other "normal 11 month old" goes through. You might know of an 11 month old who can roll over, crawl, feed themselves and can not be left alone for a moment. That is not me, nor my life. I do have some movement in my neck, legs and arms. But I do not roll over by myself, actually, I am normally positioned and moved by someone. I play with light weight toys that are easy for me to hold and pick up like pom poms, plastic bracelets, small plastic animals, poker chips and mini light weight dolls. Throughout the day I get suctioned quite often, a few times per hour at least. Especially when my oxygen saturation levels go down and I need my airways cleared. I also get CPT's often when my number go down.
I have many visits within a week between all my therapists and specialists. They also keep me very busy. I see my physical therapist 2 times a month. My Developmental specialist 4 times a month. My Occupation therapist 4 times a month. My Nurse 4 times a month. My Speech therapist 4 times a month. My nutritionist 4 times a month. My psychologist when necessary. My social worker once a month. And my case coordinator once a month. As you can see…I have many people that are dedicated to my well being.
The evenings are fun. My brother Brian comes home from school at 2:15. He plays with me and likes to brush my hair. Then Mommy and Daddy come home and I can relax with them. Daddy likes to play with me, along with mommy. Mommy also gives me my baths and reads to me. My bedtime is 10 pm, but I start getting ready for bed by 9 pm. I first get my tummy decompressed. What that means is that my g-tube is attached to an empty bulb syringe and is hung so any tummy gas can escape. After 30 minutes of that, I have my night time CPT's and a lot of suctioning. I then get put onto the cough asst for a few rounds of "coughing" along with suctioning. When all of that is done, then I get changed into my pajamas. I lie in my crib and have the kangaroo feeding pump connected into my tummy for my nightly feeding. I then get the bi-pap machine mask put on with the cap and mask over my nose. I have oxygen turned on through my bi-pap along with a humidifier. I also have a room humidifier that gets turns on at night. My pulse oxygen machine is always connected to me all the time, so that is running from the bottom of foot out my pajamas to the machine. Again, you can say I have a lot of cords, tubes and hoses coming from my little body. That is normally my day with an occasional doctor visit into town or on the weekends a trip to the mall. Read more about my outings under "Trips, Travels and More Equipment."