Today has been better. That definitely doesn't move it up to a great day...but it does move it up the scale. Around 11 p.m. last night, I noticed good changes in Sandlyn. Her face was not as grimaced as it has been for the last week. She actually requested to eat a few bites. The other 15 tiny bites she has had in the last week were bites that were taken because I insisted. Her request was Funyons...but I was just glad she would put anything in her mouth and it stay.
Patching her eye worked really well to decrease the nausea. We patched it Sunday night and on Monday we checked it. At that point, things were not truly double, but they were blurry and starry...and in Sandlyn's words "really weird". I told her to put the patch on and leave it for another day. This afternoon, she took it off and things look normal to her. I am so thankful! By the way, she is still on her high-power pain killers...so that wasn't what caused it....still don't know what did.
We ended up changing her bandages today. Valerie, a former school nurse, came and helped me. I told her that she had done such a good job helping me 18 months ago, that she was the first one I thought of this time....Lucky her! Not really, but she willing came ...a long ways and through hard rains...but we got the gauze pads changed and her legs rewrapped and back in the stablizers. The yellow tape that is on top of the incisions will need to come off the next time. If we had taken it off this time, the incisions would have started bleeding again. That will be a bad task next time around, but it has to be done. Our plan is to do that Thursday afernoon.
About 6:15 this evening, Dr. Killian's office called to check on Sandlyn and to schedule next week's appointment. Linda (his nurse) is the one that called. We talked about several things, but when I mentioned that Sandlyn had been seeing double, she said they had one other child recently who said he was seeing double too. He had a history of that problem, so they didn't think anything of it. She said that she never had heard of it before. Unfortunately, while I had Linda on the phone, I didn't think to ask when pathology ought to be in. She is very hard to get on the phone...so I don't know what success I will have getting back in touch with her. I do know that they prefer to just wait the two weeks until your follow-up and give you the results then. Last time, we waited until the follow-up and when I asked him in person what the tumors were, he told me one thing...but when I asked for a copy of the pathology report....it said something different. I don't like the 2-week plan, so in a day or two, I will start trying to reach them for the results and a faxed copy of the pathology report. Our follow-up appointment is next Wednesday.
Hopefully, tonight I will sleep in my own bed for the first time in a week. I will have to set my alarm and get up a couple of times, but it shouldn't have to be every 2 hours. I will be glad to get back to my sleep apnea machine as well....I might feel human tomorrow morning.
As for today...I heard Sandlyn laugh and I have seen her smile and she actually wanted to play Connect Four with me once. She has wanted to talk today and has sat propped up in the bed for quite a while today. She has eaten a little and drank a little, opened her own mail and a gift that came today (she loved it Bailee!)...she is on the road to recovery. She is still in a good deal of pain and on some good pain meds..but we are making progress! Thank you for all of the prayers...it is pulling us through!
Until next time ...be a blessing to others...Sarah
