Needless to say there has been so much that has happened since my last post.
Mylah developed what I thought was a cold 2 weeks ago. It started with a fever and runny nose which we attempted to treat with children's Tylenol and Vicks. 2 days later she seemed fine, still her happy little self. Then 2 Saturday's ago while she was swinging Juwan noticed that Mylah was crying. I thought she may have just been upset about something, but when I looked at her I noticed tears in her eyes. I was alarmed because Mylah almost never cries and when she does there aren't ever any tears. So as I watched the tears fall from her face I knew something was wrong.
She continued to display discomfort all day long. She could not be consoled. She would take little cat naps, but would wake up crying and obviously in pain. I know that if we could actually hear her voice those cries would have been very loud. I fought with myself about whether to take her to the hospital or not. I tried gas drops a few times (because I know what gas pains feel like) but they didn't help any. I stopped feeding her because I thought her stomach was hurting. It didn't help. Finally at about 9:00 Sunday night I made the decision to go with my gut and punch it up M14 to Ann Arbor, MI. We arrived at the hospital and walked into an empty ER. Right in, straight to the back. Rectal temps, continuous explanation about why Mylah was brought in. Questions about her meds. As the hours went on I knew that we weren't going home. How long we would be there was the question. I didn't want to be admitted. I honestly thought Mylah had gas and that the nurses would look at me crazy because we drove 30 minutes in the middle of the night for them to tell me my baby had a bad bout of gas. But that wasn't it.
I explained to the nurse that Mylah's home care nurse had mistakenly ripped her G-tube out about a month ago and that it hadn't been right since. I didn't know if this was the source of Mylah's pain. The gauze that we wrap around her G-tube was soaked with formula which was unusual. They vented her G-tube in an attempt to relieve her stomach of any air and a bright yellowish fluid began to drip out. I assured the nurse when my sister vented the tube before our arrival that it wasn't any color to the fluid. An abdominal X-ray revealed no bowel obstruction or illeus. Then we were being admitted. They wanted to monitor her for a day or so to try and figure out what was wrong.
By the 4th day it was confirmed that Mylah had contracted a bacterial infection called Clostridium difficile or "C diff" for short. Where and how she contracted this infection we aren't sure, but we were sure that we would change our everyday habits to prevent this happening again. She was given a antibiotic to help and we saw improvement. That Friday we were released back home. I prayed that we wouldn't have to spend the holiday in the hospital.
As Mylah's 1st Christmas approaches I'm eagerly awaiting. Although she doesn't know what the holiday means, it's exciting to be able to celebrate with her at home because it's another milestone. She has her own little tree and even got a special ornament from a new friend. We told the adults in our family this year we wouldn't be spending money on gifts for adults.
Months ago, while still at Mott I thought about the families who would be spending Thanksgiving, Christmas, & many other holidays within the walls of the Mott ICU or the Moderate Care Ward. I thought about all the families who wouldn't wake up Christmas morning in their own beds, instead they would be waking up to the sunrise over Ann Arbor in either the Ronald McDonald house or the "plush" hospital sleeper sofa inside their child's room. I pictured the families who wouldn't be surrounded by their families & friends at the dinner table with all the fixins for Christmas dinner, singing Christmas carols, watching holiday classics and getting cozy by the fireplace. Thoughts of those who would be bedside by their children as they fought against whatever ailment had them in a place so far from the comfort of their own homes and many from their families. I made the decision that we would donate to the hospital. I couldn't imagine the feeling of being away from my home & family during Christmas and many times there are great sacrifices that families have to make when a child is in the hospital for an extended period of time. Most families have to make the hard decision to reduce to a single income household and that is an enormous amount of stress on a person.
I know the feeling you get when you spend days in the hospital, developing relationships with hospital staff, trying to find new places to venture out to and longing to be where your heart truly is. I'm praying for all of those who find themselves away from their loved ones this holiday season. I'm praying for the mother's who will be hovering over their child's bed as the alarms inside the ICU beep continously. I'm praying for the father's who stand strong by their son's as they recover from their latest round of chemotherapy. I'm praying for the grandparents, who will travel from afar just to come kiss the foreheads of their beloved grandchild who is breathing with the help of a massive machine. Our brief stay a few weeks ago reminded me how easily things can go from good to bad and in a matter of seconds & your life changes.
I know that this year I have been truly blessed and I'm forever grateful for GODs covering over my family and myself.
I pray that each person who reads my blog has a blessed Christmas and that you are surrounded by those you love because I intend to surround myself with the ones I love most!
GOD Bless you all!!!