Day 6

Ok, so today I have lots of hope. It may have something to do with the fact that I just woke up form a 2 hour nap.

But also, Colin’s tracheostomy went well, and he is awake and feeling better.

Today I am grateful for the wonderful staff at the hospital – each and every one has been so kind and supportive and helpful. I simply cannot say enough about how wonderful they are – specifically the ICU nursing staff. I think they are a breed apart, and it is clear why they do what they do – the are born to the task. They are just more than I could have ever wanted, and I wish them all the blessings and love in the world. Thank you each, and every one of you.

Today’s win is that Colin doesn’t have that awful pipe in his mouth, and although the strap has left a mark and even a little sore on one spot – it can only get better from now on. Although it was difficult for me to do the spelling thing with him because he had literally *just* woken up from the anesthetic, we can try lip reading. It was not great today – I think I made him more frustrated than ever before, but it is all good. We learn together.

I need to research about a talking thing for trachys – there seem to be more than one type, etc. That is a priority for me and I believe for Colin as well. Make it so.

I had to update the board system because I think I actually wrote the chop too small, and Colin spelled “quadrant” to me so I updated it with a quadrant so we pick 1,2,3, or 4, and then go through 6 or 7 letters. This seems to be a better system for the moment. My cousin Penny, in Canada also suggested having a list on the board for things like: scratch my…, I’m thirsty, I’m hungry, etc. I have such clever family and friends, and continue to be supported in every possible way. I am grateful for this, and need to learn to start leaning in people. That will come in time. But the most important thing is that Colin’s brain is unaffected and he can still brain as well as before. This is my miracle for this week, never mind today, and I am thankful and feel blessed and lucky beyond words.

Another small thing that happened today was that we misread something in the rehab pamphlet. The actual thing said Augmentative therapy, but my dad read it as Argumentative therapy. Personally, I think the second would benefit Colin more.

Be strong my love – I know if anyone can be stubborn enough to just fight through this, it is you. I am here for you, and we can learn the new stuff together. I am going to enroll in lip reading, mind reading, and magical ball reading, so hang in there. If we can beat so many teams by so much at 30 seconds, we can beat this. Big hug my bestest. <3