I can't believe we have already been here a week! It has been a whole week since we got to hold our little guy :( Today was uneventful. Leo continued to slowly wean off the vent. His heart rate has been abnormally low and it was really starting to worry me, but one of the doctors they call doctor "O"just stopped by and said he thinks it is due to a steroid he is on to heal swelling in his throat. He said the steroid causes higher blood pressure which in turn causes lower heart rates. He pulled up the charting of Leo's blood pressure and sure enough it has been higher since the steroid started. Win! One mystery solved! Leo's been rather agitated today so they are stopping the pain med weans. He may have hit his limit.
Today I had a very touching experience. I have mentioned before I am in a FB group for kids with Cerebellar Hypoplasia. One of the Mom's posted a picture of her son and he looks strikingly similar to Leo (even though he is a different race). The Mom and I messaged each other and ended up talking on the phone for an hour. She is such a nice person and shared so many wonderful insights about her son's medical challenges. It has led me to a day of surfing the Internet based on her leads to learn more about Leo's medical challenges. It was so wonderful to talk to someone who has traveled down the same path as us, but at the same time heartbreaking.
What a sweet baby face! Leo is adorable! Chris
ReplyDeleteThinking of you all constantly, Leo is such a little cutie! I'm glad to hear you have been able to talk with someone also going through something similar. That always helps.
ReplyDeleteLittle Leo is such a fighter! Will keep him in our prayers.