We settled Tom into a hospital bed at his parents house which was fortunately just 10 minutes away from the kids and me. Our biggest challenge now was keeping him eating , gaining strength and most importantly keeping his ileostomy bag sealed so his incision could heal properly to reduce the risk of a bacterial infection from waste seeping internally. Nurses would come every two days to change his bag, however they kept failing. His mom would call me when they failed and for whatever reason when I changed his bag it would last the longest. A nurse said she had to go through 9 weeks of training and couldn’t believe mine were staying on longer than the nurses when I had little training except for watching while it was done at the hospital. I had no explanation either and even when I told them what I did theirs still failed. They should last for at least 4 days and his were failing every 24 hours or so due to the proximity of his incision which was too close to get a good seal and it wasn’t even fully healed.
The dreadful call came from my mother in law that I needed to rush over immediately because his bag failed after only 4 hours of the nurse putting it on. It was a lengthy and painful process to take the bag off and put a new one on. I sent out a text to my friends to pray his “shit bag” would hold over night because I honestly didn’t know if he or I could endure another changing of the bags. Excuse the crass reference, but that is literally what it is.
It was my first Friday night home with the kids and I promised the girls to watch a movie with them. After three weeks of being gone , we were all so thankful and happy to just be together again. I put on a muppet movie and I get the dreaded text from my mother in law that his bag had failed and I needed to come over immediately . My heart sank! I told the girls that their Grandma was coming over and I that I had to go back to fix daddy. Bryn our youngest began to cry saying that I couldn’t go because I just got home and I promised to watch the movie with them. I began to cry too. I was feeling so overwhelmed on all levels, but I knew I needed to be strong for everyone’s sake. Through my tears I told the girls that we would get through this . We had 15 minutes before Grandma came over so lets enjoy every second we have. We start watching the movie and all of a sudden three lights above us randomly turn on. Bryn was a little scared because no one was there to turn them on. I remembered something I read that said when paranormal phenomenons occur it’s our angels sending a message so look, listen and be aware. I told the girls not to worry and that it was just Ella reminding us that she is watching over us. My heart felt calm, and then all of a sudden I get a text from his mom that she “put a light on it” and the bag hadn’t failed after all. The girls and I all screamed with sheer thankfulness and happiness that I could stay and daddy was ok. I had turned the lights off that randomly came on and we started watching the movie, but they turned on again a few minutes later!!! This time I was wondering why??? A little spooked myself honestly. I thought I got the message and then I saw the rose on the lapel of the mans jacket in the movie and I realized my Rose, the baby I lost in Italy, wanted us to know that she is up there too. Truth be told I had never thought of her like that being that I miscarried at only three months. I was in awe really. I have two angels above me and no wonder why I was the one to have the ‘magic” nursing skills. I cuddled my Eve and Bryn all the more tight that night as you can imagine.
Two weeks went by and for whatever reason my bags still lasted the longest. I was juggling the kids schedules and caring for Tom when I was needed most. His mom and step Father were helping, but appointments were missed and his medication was being mishandled and I was becoming increasingly concerned. I couldn’t do it all! We needed more help and I was starting to resent the fact that I was going to be tied to my husbands “shit bag” for the rest of my life. Obviously feeling overwhelmed and frustrated and pulled in every direction I needed a change of attitude, and of course it took a very special butterfly and my friend to keep me “flapping my wings”, and not my mouth! The stories and pics that come next are truly powerful, and the “ butterfly effect” I needed to keep me looking up!