Josh is expected to be moved off the PICU today and into a regular room in pediatrics. After that, the next step is home!
Josh looks really good today and is very much looking forward to leaving this place. He has made friends with most of the nurses in the PICU, so it will be bittersweet for him to move. While I'm not objective, I think I can safely say that he has been very well liked by the nurses, too. The three of us are so grateful for the kindness and care that he received from the PICU nurses.
Robyn and I are feeling a mix of sadness and relief today. Sad that we did not get the desired outcome and sad to end this chapter in Josh's long journey. It has been -- and will continue to be -- a grieving process for us, as we deal with the loss of this once promising "cure."
It is a relief to know that we will be going home soon. We have gotten off the roller coaster and that feels good. It has been so spiritually and emotionally draining to hope and pray every day for seizures, for localized seizures, and for Josh to come through the surgeries in good health. Today, I only wished for Josh to continue to recover speedily and and in good health.
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We share your sadness and also your hope that as one door closes another opens. This is something we see often in our work and personal lives and with the foundations of love, family and determination you have much to build on. Safe journey home!
ReplyDeleteKen