Last night I went to bed at 9 pm. My mom then had to bring in my medications at 10 pm. She gives these through the med port in my gastrostomy and Jejunal tube (GJ tube) so that they go right into my small intestine. Sometimes this wakes me up but sometimes I can sleep through it. I am eating all night through my GJ tube and my mom hangs new formula after giving me my night meds. There is a special bag that hangs on my IV pole and my joey kangaroo feeding pump is programmed so I get the right amount of food each hour. I am hooked up to my Cardiorespiratory monitor that will help to monitor my heart rate and breathing for the night. I frequently forget to breath and this monitor will alarm so that my mom can stimulate me to remind me. I also have a hard time regulating my heart rate and it often drops below 65 and so then my alarms go off so my mom can help to stimulate me.
As I sleep I am still hooked up to my oxygen concentrator. I am on this all day except if I leave the house and then I have portable oxygen cylinders that can be hooked to my wheelchair. Overnight I often have a hard time with my secretions and then my mom has to get up and suction me so I do not choke. I hate being suctioned and it makes me cry. I hate it and have to be held down so that I don’t rip the suction catheter out of my moms hands. This makes both me and mom said. If my breathing gets really bad I have to also get up and have a nebulizer treatment overnight too and sometimes 2 of them.
It is now 6 am and I have to get my next medications. I get a new nebulizer treatment with 2 medications in it. I get my medication that reminds me to breath (aminophylline), my seizure meds, my meds for my tummy issues and a breathing med. It is time to get up and start my day. I get new milk hung for the first part of the day. If we leave the house I have to have a special bag that holds my milk and my feeding pump. Now my mom will get me dressed and if I need it I will get suctioned again…dang it I usually need it. My mom helps me with my exercises and I can sit in a special chair or stand in my standing frame.
My next meds are at 10 am. I then have a new neb at noon and lay down for my nap. Every time I am away from my mom I need to be hooked back up to my cardiorespiratory machine. I also have a pulse ox that will tell everyone if I am getting enough oxygen. At 2 pm I get my next meds. At 4 I get my next neb. I have to have suctioning during the day when I get too much secretions going. At 8 pm I get my next meds, including the ones that go through my special port into my heart and the night starts again with my bedtime at 9. Every week I have to get the dressing to my broviak port changed so that it stays clean and does not get infected.
I try to be happy and always hope to stay at home but I have to go to the hospital a lot and have weekly to every other week doctors appointments, labs and other medical appointments. I have to get equipment and medications a lot. My family lives in fear of me getting sick. I have spent a lot of my life in the NICU, PICU and pediatrics ward. I have been through heart surgery, a surgery to place my G J tube, a surgery to try to fix my stomach, a surgery to clear my lungs, have had 5 chest tubes and the list goes on and on. I am 15 months old. I have been tested to make sure there is no other genetic issues going on. All of my damage is tied back to the prenatal exposure to alcohol that I suffered.
While I am a beautiful little girl and am very loved my life will never be okay due to the fact that I now suffer from FASD (Fetal Alcohol Spectrum Disorder). I have seizures, gastrointestinal issues, seizures, severe lung issues and the list goes on. I just finally learned to roll over from back to tummy and back. This is a huge deal to my mom and dad. Please remember me and think don’t drink while you are pregnant. Today for FASD awareness day I want everyone to think ZERO FOR NINE!!! 0-4-9!!!!!!!!!!!!