We have a new planned discharge date for Logan...Saturday December 15th. We wait for all the pieces to fall into place. Logan is doing great medically but I am noticing how de-conditioned he is as we try to get him up and about in his room. Last night I had him in his wheelchair. He was on the "nose". Those that follow my blog will probably see me write about the "nose" in the future. The "nose" is a small cover over Logan's trach tube that protects it and also humidifies air as he breathes. It acts as his nose!! Brilliant name, isn't it!
Back to the wheelchair, he was in it with nose on and was very agitated. We have seen Logan be more agitated than normal over the past two weeks. It could be a whole host of things. I have to remind myself that he is two years old and there is such a thing as the terrible two's. He may have his own norm when it comes to development but he is still a toddler and with that comes power struggles and behaviors!
Along with the agitation has come tongue and lip biting to the point of bleeding. He has cut open his lip and the under side of his tongue from the repeated biting. It is a battle and unfortunately we have no means to fix it other than medicate him to encourage relaxation, give orajel and tylenol in case he is teething, and just sit and watch in agony as our child tortures himself. He doesn't seem to realize how much it hurts to bite himself. Who knows if this is related to his underlying unknown diagnosis or if it is my own interpretation of pain or in this case absence of pain.
I am also worried that he is agitated from the constant suctioning as he is so juicy from both mouth and trach. I pray the biting will cease when we are home and he is more comfortable. He continues to wean from the drugs. Right now he is on a methadone wean. They are holding on the ativan wean for now. One thing at a time for this kiddo.
Now back to the discharge front...I have had the opportunity to interview many great and well qualified home health nurses and our home health company is working very hard to get us staff. We should have a solid schedule soon. We have been fortunate enough to have about 10 people interested in working for Logan and most have experience with pediatrics as well as kids with trachs. I am so relieved to know that we will go home with a staff of nurses that are qualified and comfortable with his needs. The last thing we need is to have to teach nurses how to take care of a trach when we barely know what to do ourselves! Now we will have knowledgeable resources to learn from. Logan will have about 5-6 nurses on his staff and possibly a few more to fill in here and there.
My family and Joel's family have been working so hard the last month to get our home ready for Logan. We have new laminate floors, fresh paint, a clean and painted bedroom for Logan and tons of other odds and ends complete. My dad is a contractor and can pretty much fix and build anything. He and my mom have traveled many miles over the past few weekends spending hours fixing and cleaning our home.
Joel's parents Skip and Cindy have also spent many miles on the road. They also have worked hard to get our home ready. Lauren has spent most of her weekdays with Skip and Cindy either at their home or at ours. They are teaching her so many good habits and she has been so respectful to them.
I am so proud of our four year old daughter, Lauren. She is really coming into her own. Her personality has really blossomed and she is growing so fast. I love to listen to her talk. She is a hoot. I think she has her dads sense of humor! I had to tell her we were not coming home as planned and she did so well with the news. I told her she was going to grandma and grandpas one more time and then Logan would be home. She had such a good attitude and just said "and then we will be back to normal?".
Normal, what is normal. Life feels nothing like normal these days. Living at a hospital where time seems to stand still while life around you still goes on is not normal. We will be home soon and normal will return. It will take time to create a new normal but it will be great when we do. And we will be home just in time for the holiday's!!! Yippee!
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