It's always easier to write a blog entry when all we have to tell about are miraculous changes or progress. Today is not one of those days. We know, understand and accept that there are good days and bad days. We know that there are challenges ahead that will be very difficult to deal with and we know that only the Lord will have all the answers. We just need to stay focused, ask and then listen.
Yesterday Shannon seemed extra tired. She started being a bit more defiant when we wanted her to eat. Then this morning (well at this time of night I guess it was yesterday morning) she just did not want to wake up, telling me she was still so tired. Before it had helped to get her showered so we headed to the shower. She was awake and somewhat perky in the shower. Right after, we went straight to OT. She worked maybe 10 minutes before she just put her head down and said she was too tired. Generally, even though she doesn't want to work, we can convince to make it through the session--not today. We went back to her room and she slept--soundly. The doctors had a blood test done and found that she was at 22--normal is 30 and 18 is not good at all! So it could have been part of the problem. After discussing what was going on the decision was made to give her a couple of units of blood. That took up the majority of the day and we still aren't seeing the consistent perky Shannon we have been used to. We talked with Aaron (our doctor son :))and walked through the situation. We thought that perhaps the medications that they had been given her were possibly causing her to be so tired and sleepy. It could be, but since Thursday mid day she hadn't had any Lortab or Toradol, only some Tylenol and one dose of Motrin before bed. It is true that it takes a long time for some drugs to get out of Shannon's system. So perhaps that is still part of the issue. And the third possible reason for the tiredness may be sadness. Shannon is becoming ever more aware of her situation and what it really means. Her short hair has never really bothered her until today. Because she has been so tired, we have had a very difficult time getting her to eat much--not just because she is tired but because she refuses. She still drinks well but not as much and most foods, she just won't even try. So the big question is, is the problem low blood, medication, sadness or a combination of all 3. I think I would have to say a combination.
Shannon has had a few visitors and she generally perks up well for them. It has been good for her. We do schedule visitors because she can not have too many and they can't stay for very long. Whenever someone leaves, they are so amazed at how good Shannon looks and how well she does interact with them. We see her every day and so don't realize what others may think of Shannon's current condition. She looks good, she knows people and she can carry on a conversation very well. We do know that when people leave, they feel uplifted and inspired because of what they have experienced with Shannon. We do know that family and friends are important to her. We have read and reread every letter, card, poster, email, blog comment that we have received for her numerous times. She loves to hear from others.
I must say though the clouds are not all dark. Shannon did eat for the speech therapist today and passed into another level of foods. She is now at the advanced mechanical soft foods. Wow, does that open up the options for her! She ate french fries today and pieces of chicken nuggets. She only ate 1/2 her fries and maybe 1/8 of the nuggets but she was thrilled to have them when she started eating! I hope the variety will help to improve her appetite. I spent 30 minutes or so with the dietitian today learning ways to boost the calories in the things that Shan does eat. It's going to take more time than we wanted before the feeding tube comes out but patience is a virtue that we are working on here! :)
We know things are going to be tough on Shan emotionally and ask that you would pray for her to receive the divine help that will sustain her.