We were in a curtained area with very noisy next door neighbors. Our nurses tried to do the best they could for us. One saw Caleb struggling and started asking for another room for us the first thing this morning. After 30 hours of constant noise and only short (15 min) bursts of sleep, Caleb was getting worse, not better. I casually mentioned that I was considering medical transport to another hospital with a quieter environment so my son could get the rest he needed because I was concerned that he was going downhill and not improving. We are now in a very quiet room. One nurse is not happy with me because the move coincided with her 12 shift ending, but...
Caleb is FINALLY sleeping as I type this. He is my ultimate concern. He could have died and has been knocked way down physically. I will make sure he gets what he needs to recover as quickly and comfortably as possible.
I have many friends with special needs children. I appreciate them more after this. They put in many, many long hours tending to their children's every need. Quite a few of them have had to advocate on their behalf when the care was lacking. I had to help my son urinate while he was too weak to stand. It was embarrassing for him and me. I have had to push him to do things that were very painful for him to do. It tore my heart out to urge him to move when I knew it would leave him breathless from the pain even with the morphine. It is also not easy to speak up when there are so many people and other opinions to deal with, but mothers are the voices for their children. If we don't speak up, things will often be overlooked or left out.
My son thanked me for getting him a quieter room. That's enough for me. Some of my friend's children can't speak, but I know they are also grateful for their parent's care, attention, and advocacy.
There are many things to praise the Lord about through this. God is good and has provided every step of the way. Brandon's and Amanda's bosses have been more than understanding to let them off work or rearrange hours so Clint and I can both be here where Caleb wants and needs us. We have people lined up to fill in gaps, if needed.
Thank you for the prayers, assistance given, offers of more help, offers of child care, cards and gifts sent, phone calls and other communications, concern, and so much more . We are so blessed by our friends. We know the most loving, kind, and generous people. Thank you all so very much!
