I just became a registered nurse, and my ten-year-old son is infant-like, has frequent meltdowns, and cannot stand without support. He is missing a piece of DNA (chromosome 9q22.2) but we are unsure if it made him disabled. He has a diagnosis of severely multiply impaired, paucity of white brain matter, partial agenesis of the corpus callosum, microcephaly, deformities of the ankle and foot, and Autism.
Friday, February 8, 2013
Rescue drug didn't work
Today was a horrible day. The kids had a snow day. Andy doesn't normally have school on Fridays. This means it will be a bad day usually. Andy had a low appetite and was having hard stools. He cried a lot through the day. I put him down for a nap. He woke up a mess, I gave him the rescue drug Klompin. He got more irritated and cried more. I called my mom and told her I could no longer take Andy's crying and I needed to bring him over. I called the neurology office. They were concerned he might be in pain. They told me of respite care and that I can't do this alone. Andy's primary doctor was out of the office. I went to take Andy to urgent care but it was packed. I took him home and put him to bed. 6:30pm. I'm hoping he will stay crashed for the night. I am still crying. My daughter heard me telling my sister that I hate being his mother. She told me "I'm sorry Andy makes you feel that way. I hope you feel better tomorrow. I'm so sad. I'm still waiting for my rescue.
Subscribe to:
Post Comments (Atom)
Hi Amy. I check your blog regularly to see how you and Andy are doing, and I'm always in awe of your patience and ability to hold it together. You are doing an amazing job, and I think respite care sounds like a really good idea! Hoping tomorrow is a better day for you all.
ReplyDeleteI am so sorry that you are going through this. It's okay to feel all of these emotions you are going through and I am hoping you get your rescue soon! I love your blog and keep up with it regularly. I especially admire how you are so honest about how you are feeling and coping. You are helping many moms out there dealing with similar situations. Thank you!
ReplyDeleteWow, that does sound like a horrible day. Did they figure out anything yet to make the pain a little better? I hope today was a little smoother for you guys. Good luck! Alana (boynamedsilas.blogspot.com)
ReplyDelete