I am beginning to find in very frustrating being away from the hospital and not have full knowledge of everything that is going on with Ellie. I have not been there since my brief visit on Tuesday when I realised I was coming down with a virus and went home. On that note Matt, Hannah and myself did enjoy a nice anniversary lunch today and Matt and I spent more than 30 uninterrupted seconds together in what has been a very long week for all of us and I am feeling a little better. I am confident I will be back at the hospital on Tuesday. Matt will do his usual Monday routine tomorrow.
On an Ellie front, no changes again. I did find out today that a few days ago her NAVA level did increase and it is still just shy of where is was when I was in there on Tuesday. I think no other changes is starting to become frustrating. I know she is resting and slowly getting bigger, but it would be nice to hear that she is making some sort of other progress or that the doctors have a plan for her. Hopefully these questions will be answered when I am back on board this week and able to have a meeting with the doctors.
Nan and Papa spent time with Ellie today (which allowed Matt and I to spend some time together). Ellie had hugs and had a story read to her. After they left Ellie was in her chair for awhile to help relieve her reflux and had more stories read to her by the nurse. I’m told 3 nurses got together last night and gave Ellie a much needed bath.
Hopefully this coming week with be ripe with plans and progress and answers.