So far, the year is off to a pretty good start. (considering we are only 2 days into it, I guess that's really good but, there is still plenty of time for everything to change. And I know it will however, it is always good to get off to a strong start). With Luke and Mikey heading out for VT early Friday morning, we were left to entertain ourselves for the day and ring in the New Year. Mikaela was feeling fairly well, she was taken off of Neomycin and put on a new antibiotic (Rifaximin) to help with the ammonia, which was hanging in the 160's most of the day. We logged some hours on the Wii, watched a movie and then asked for permission for Mikaela to leave the floor and go to the 6th floor for the activity that had been set up by Child Life. The NHL Winter Classic was being played here in Pittsburgh at Heinz Field on New Year's Day and from 2-4pm CHP was going to host several NHL hockey players, give away Penguin jerseys along with other cool stuff, furnish snacks, provide crafts and it was all getting media coverage. Sounded like a good time and way to pass a couple of hours. Until...permission denied! Bummer. The doctors wanted to keep her hooked up to monitors for the day since she had been so sleepy and her ammonia level had been up in the high 200's. We found things to do and before we knew it, Mikey called to say they were home safely at about 6:30. Mikaela and I had something for dinner, paited nails, played some more Wii, made some silly videos on my camera, I did some blogging and when we looked at the clock it was time to head to the "sunroom" to watch the fireworks! Every floor with patient rooms has a "sunroom" in one corner of the floor. It is a 2-sided area at the end of the hallway that is floor to ceiling windows. Since it is on the corner and basically all glass, the view is pretty amazing. There are several chairs and a table so it is a great place to relax, read, play a game or just escape the four walls of your room. Here on 9a the sunroom is the southwest corner. I know that because the 4 of sat there one evening and watched an impressive sunset fall behind the buildings of downtown. As for the watching the New Year's fireworks from there, it would have been great if they would have been launched higher into the air. Most of them didn't even get above the buildings downtown so, we only saw little bursts of light and lots of smoke. About a dozen other patients and parents were watching too. That's how we rang in our new year. Then we went back to the room and watched a movie (well, I watched most of it but, ended up napping a bit in the middle).
Saturday, my sister came down for a visit about 1:30. She had stopped by the grocery store to pick up a few requested items-grape gatorade, cheese nips, grahm crackers, milk along with a few surprises (peanut m&m's, gummi bears). She brought all the goodies to give Mikaela a relaxing pedi which is just what she needed. After the soak, leg massage and lotion application, it was time for the nail polish. After the toes were looking ready for the beach, it was on to fingernails. They were having a good time with all of the crazy polish colors. When it was my turn, I opted for clear. Mikaela told me I was bland like oatmeal without the syrup! OUCH. It's true I guess-I'm not a big fan of having painted fingernails. For the record, I did let her paint my fingernails today-and in my opinion a way too dark color called "Broadway Burgandy". Then she asked me to cut her bangs and I told her I didn't want to because I don't know anything about that and she called me boring. I will be happy to take her somewhere and let it be done by a professional. I mean really would any of you cut your 13 yr old daughter's hair-that just seems like a bad idea especially since she is stuck with me 24/7. I don't want to be the one to ruin the good thing we have going. We had a super visit with Nichole and again the day seemed to pass way to fast. She had to head home to her little ones so she left about 8:00. Mikaela rested for awhile then we watched some tv. About midnight I had to retire for the night. I thought Mikaela had fallen asleep too but she told me she had trouble sleeping last night and was up until about 4. I am glad she let me rest but sorry she wasn't able to sleep.
Mom and Gram were supposed to come today to keep us company for a week or two but they were working on laundry and a few other things that took longer then expected so they called and said they will be down tomorrow (Monday) instead. We spent today pretty much like the last few. We did stop by the RMH to pick up a few things today. It would have been so nice and easy to settle in and relax over there for awhile. Today was our 15th day in the hospital for this admission. It has gone pretty quickly but of course we have had several distractions with Christie, Frank and the kids coming for a visit, Mikey and Luke here for the week, a trip to the PICU for 3 days, Christmas, New Year and so on... Today when our GI attending came in I asked her if she had a plan or thought about a possible time for discharge. She is going to speak with Dr. S. tomorrow and see what he is thinking. I know they wanted to see how the new antibiotic would work on the ammonia. Thankfully, it has been steady for the past few days in the 140'S. This afternoon it was even 103. Needless to say that could all change but it is great to keep it steady and not jumping into the high 200's. How Mikaela is feeling and doing clinically is more important then the actual number. I am happy to report that she has felt mostly well this weekend other then a few episodes of intense belly pain. Hopefully we will get to go to the RMH soon and then we can get out for a dose of fresh air and sunshine. I that will do us both a world of good. As you all head back into your routines tomorrow, I hope you are able to fondly look back at the week and smile when you think of your loved ones and all the special memories and moments of the holiday season.
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