We are enjoying reading the comments. Thank you everyone for sharing with us. They have all been a great uplift to our days here.
Kathryn had an IV removed last night because it was bothering her and the nurse said they didn’t really need it any longer. The second IV was removed today because it stopped working. So in place they put in a pic line which is more comfortable and will last like a port. Yes, she has a port too but they need more than that one line of access. Right after her seizer she had 5 pumps running stuff into her body so port just wasn’t enough.
The other issue is that they will not be able to do the tracheotomy the quick and easy way. Or maybe I should call it the less invasive way. Her airway is so small because she is so tiny they just don’t think it would be a good idea. That means surgery which always has its risks. We will talk with docs tomorrow about all of this.
Good News too! Kathryn was able to communicate ideas today through writing. Her writing is difficult but she did it. It really helps to be able to get your input in or your questions asked. This was a big step and a helpful one. On a lighter note, the second thing she wrote was two my dad as he was heading home tonight “Bring my phone”. We all got a little laughter out of this which was needed.