Today Gavin was taken off the ventilator and is back to an oxygen mask again. I was out of the room for the actual extubation but it went smoothly and he has been breathing well on his own since about 1:00, but still requires 50% oxygen.
When I came in he struggled to say his first words in 13 days. His voice is scratchy, rusty, and oddly high after being intubated for so long. Hearing him say a few little words brought tears to my eyes. I hadn’t realized before how difficult it is to communicate with someone who can’t speak. It is especially difficult because obviously he can’t yet write and so kept trying to talk. Heart-breaking.
He slept much of the afternoon but was quite active in the morning and early evening. He wanted to read books and play with a fun sticker/numbers book a friend sent us. He really focussed on it for at least an hour.
He tires easily of course, and has not had much to eat for a couple
of days. I can’t project how long his recovery time will be or how long it will take for us to get out of here but I imagine it will be several weeks. He is so thin and weak and shaky right now, and seems to have lost some of his sparkle.
But. There is talk of moving us back to our old room tomorrow. Hurrah! If not tomorrow then perhaps the next day.
Sending you all our love and relief to hear of this and Gavin’s clear MRI. Our christmas wish is for Gavin to keep taking his amazing steps to heal and be home as soon as he can to enjoy his beautiful family. As each day improves Gavin is going to regain his strength and his amazing sparkle. Thinking of you always.
Sending you all our love and relief to hear of this and Gavin’s clear MRI. Our christmas wish is for Gavin to keep taking his amazing steps to heal and be home as soon as he can to enjoy his beautiful family. As each day improves Gavin is going to regain his strength and his amazing sparkle. Thinking of you always.
we are so relieved and happy that Gavin seems to have made it through the worst. We hope that in a short time he will be able to get back to a normal daily routine of just being a kid where the worst thing he faces is eating his veggies. Love Amy, Phil, Phoebe and Tom xoxo
Delighted! And still praying.
Hooray for tube removals, and getting that little voice back, and improved breathing! And eating a little more and getting out of ICU is next! And your Christmas present this year will be continued improvement and healing and the sparkle in your baby’s eye.
Sxoxo.
Gavin – you are truly a wonder. Strength, courage, determination, joy and love all combine together in you. We are here with you every step of the way, our little friend. xx diana and your friend seraphina
HE TRULY IS THE GAVINATOR!!! – He will get that sparkle back!!!! xoxox
Good news, love from us all, continuing till sparkle fully recovered. X