I'm finally getting this blog caught up after getting back home. Ok, so after a crazy packing job and saying our goodbyes to the Children's House, we flew home with a 4 HOUR layover in the middle! It was a super long day. We had to fly out of DC, so we went to stay with our friends The Roney's the night before. It was so great to be with friends and have Lily play with all the girls. Patience then drove us to the airport the next morning and we were off. Benny and the boys were anxiously waiting with the cutest signs saying "welcome home" and "we love you!" It was a great moment!
Once home, we were greeted by my parents, and my house was spotless, garage organized, and odds and ends fixed around my house. My parents and Benny had worked hard on making the house look great for our return. Even the Christmas tree was up. It was super weird being home. Everything looked so different even though it was the same. But it didn't take long to get right back into the groove of things. We had come home to a really busy weekend, and I wasn't sure how we would pull it off. The church Christmas party, a work event with S&P, and then a big dinner with Benny's family. But then, of course, reality got in the way. That Saturday night Lily got a fever. Sigh. I took her into Kids Doc that Sunday morning, and sure enough she had an infection. Since Lily had to come home with that tube still in, they had told us she would be at risk of infection. And since that tube was basically holding open her ureter for a straight shot to her kidney, it turned into a kidney infection quickly. We got an antibiotic, but for the next couple days she had a really high fever and felt miserable. That was not the way we wanted to spend Christmas break. I was super frustrated and hate to see her not feeling good. It was a lot to juggle, between cathing, all the meds, and keeping her hydrated, it was a full time non stop job - even through the night. And she has lost so much weight over the last few months, she was looking so frail. But finally after a few days she was feeling better and we were able to get back to normal a little. But still lots to manage. Lily has definitely been through a lot, but being home she just wanted to play and be 6. But I couldn't just leave her alone. I had to be still giving her meds throughout the day, and cath every 3 hours. She was getting sick of this, and her behavior just kept getting worse. She was fighting me more and more, running away from me, throwing things at me, calling me names, etc. I cannot blame her one bit, she's been through the wringer, I would feel the same way. So I've tried my very best to stay calm, or to give her breaks, but I'm not perfect. We have gotten in screaming matches and I have had to walk away many times. Thank goodness for Benny being the peacemaker. He can tell when I've reached my limit of patience, and steps in to smooth things over. It was a hard couple weeks over Christmas. Then we knew we had to go back, and was waiting for the schedule from them. We finally got the dates, Jan 6th, would be there for a week. They would hopefully take the tube out, after testing to make sure everything is draining the right way. All we want is that tube gone for so many reasons. She's been having to deal with this extra thing, scared it could get pulled, can't take a bath only showers, and just has to be careful all the time. That's no fun for a 6 year old. So we fly back on Jan 5th for a few days in Baltimore to hope all goes well with that!
No comments:
Post a Comment