We're feeling the prayers! Oh my goodness! We are so thankful for all of those we know and those we don't that are praying for Matthew.
Yesterday was a tough day. I debated even sharing anything until we knew for sure that we needed to make a decision. I was so sad yesterday. I needed to process it; and processing is equivilent to writing for me. I hate to get people worried unnessessarily. I don't think we are at an unnessessary point though. It's scary to think you have one more medical option, and "that's it." The idea of having to "choose" what is best for our son is scary. How do we know for sure if we are making the right decision?? What if we're missing something? All those thoughts are swirling through my head. And what on earth will I do without this little guy?? My mind and my thoughts overtook me yesterday. So I wrote. And I'm thankful I did. The outpouring of love we are feeling and the prayers that are storming heavens gates are amazing!!
We talked with his pediatrician late evening and she wanted us to give a dose the medication to help with secrections(Robinol) in the middle of the night. That will mean us getting up every night to give an IV medication, but she wonders if that will help get on top of his secretions. Also, with help from some diastat (that we used to stop the crazy seizures last evening) Matthew slept all night. His nurse was with him today; and I was able to get out of the house. I purposely didn't want to think about what was happening at home. I went and got a hair cut, and a coffee. When I got back around noon, his nurse was happy to report that he had done well for her so far. He had kept his medications down and hadn't gagged at all. They were snuggling and he seemed so much more content. His day continued uneventful. The most UNEVENTFUL day we've had in a LONG time. I took him outside today on a blanket and let him get some fresh air. He's been super content all evening.
Tonight, about 30 minutes before his evening dose of Robinol was due, he started coughing, and sounded really "wet". Within 15 minutes of giving the Robinol, he settled down and was breathing more comfortably. I'm hoping tomorrow that the ENT is completely on board with the Botox. I can't completely guarantee that his good day can be attributed to the extra medication; if fact I would almost guarentee you it was all the prayers that were sent up!
We sure are hoping the good days continue!! We know we have more of a battle, as one day does not make or break it for Matthew, and he is REALLY good at throwing in curve balls, but it's a step in the right direction!! I want a million more days like today! I'll take as many as God gives us!