So, I am in a bit of a bind. First, I lost my cell phone over the weekend, which is terribly sad because I had a lot of memorable pictures on it. Second, I left our home laptop in Pittsburgh, and our new Surface isn't connecting to our wifi because we can't remember our password. I was upset because I wanted to send out an update tonight...then I found Riley's iPad! So, here I am...updating on the iPad. I don't have any pictures today. My sister sent me a few and I am not sure how to save them to the iPad...not an Apple user. Tomorrow I promise to include some pictures.
Anyway, we had a nice family weekend. We actually spent a lot of time at my parents apartment/hotel. It was easy for Riley to play and feel comfortable. Nolan had a tough weekend. This morning they said his night was a little better than before, but his agitation level was still at a point where it could become dangerous for him. His heart rate would get close to the 200's when he was worked up and around 150 while resting. Just to rule things out they did a CT scan of his head to make sure nothing was going on neurologically. Thankfully it came back unchanged, so the doctors/physician assistants are pretty sure this is all truly withdraw. Yesterday they went back up on his Ativan hoping that would help...which it did a little. And today they went back up on his methadone. I am pretty sure they will stay like this for a few days then start weaning at an even lower amount at a slower pace. The goal is to get him back to his happy place. He did so well this week and was so happy. It was hard to leave seeing him so stressed. On a good note, they are placing him back on his feeds slowly and decreasing the TPN as the feeds increase.
I have to remember what I was told in the beginning. This will be like a roller coaster. And I need to remember how far we have come. It is all a balancing act. Sometimes things are going well and we get ahead of ourselves. I think by the end of tomorrow or Tuesday he will be in a better place. I have to admit that this is getting tough. The waiting is grueling. I think it being the holidays makes it hard. It is only one year that things will not be the norm, and we'll still make it special...I just miss my family all together, in our home! Our plan is to spend Christmas in Pittsburgh, so at least we'll be all together. We just want to make sure to it is special for Riley.
I hope to have my new phone tomorrow or Tuesday. It is amazing how much we depend on them! I feel like a piece of me is missing. It's probably healthy to be away from your phone for awhile! Luckily I recently downloaded all my photos, so I think I am only missing about 2 weeks worth. So, could be worse!
I hope everyone had a great weekend! Back to the office tomorrow. Always look forward to seeing my coworkers and friends...but I am missing my little guy like crazy.
ONE MORE DAY CLOSER!!!
#nhos
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