It doesn’t look like we are heading home tomorrow. Whew! Even if we were to be discharged we would fight it because we don’t have any equipment, medications, a hospital bed or anything set up at home. It’s all in the works but nothing is at the house. We have stuff to pack up, furniture to move, supplies to stock, etc. we need more time!!!
And after further investigation and talking to parents, doctors and therapists we have decided to move forward with the Baclofin pump for Lily. We werent comfortable several weeks ago but as her spaticity and tolerance to the medications worsens it has become clear to us what we need to do. Nonetheless it is a tough decision and one we didn’t take lightly. We’re hoping to get on the schedule for the surgery on Tuesday. And she would remain at Millers, but in ICU, for her recovery of approximately 3 additional days.
But of course things change and the unexpected happens quite often so I say that is the “tentative” plan for now. Thank you for the posts, the prayers, the positive thoughts and vibes, the hugs, the Kleenex . . .
Thank you our wonderful community of old friends, new friends, family and friends we’ve never met. We are eternally grateful for the support and love you have shown for Lily and our family.
We couldn’t be as strong if it weren’t for all of YOU!!!!
Jim & Les