Beckett continues to struggle. He has moments of progress; followed by significant and very scary setbacks.
Last night, he showed some real progress; and was actually able to hold and aim a Wii remote at the bedside TV; he was talkative and alert. This morning, he woke up in his worst state yet – with almost no movement in his legs or arms, and with his neck showing significant signs of weakness. He has had some respiratory problems, too.
When we left at lunch time, after he had visited with a physical therapist, he was doing slightly better; more alert, spunky and, he fed himself a half a chocolate cookie. It seems with each hour, there are positives (he has had an appetite for the first time in 3 days today) and negatives (the paralysis in his legs is frightening today).
Somehow, though, Beckett is always positive – a bright, big sunny light amid all these frightening developments. There’s no way to sugar coat it: Heidi and I are sad, and scared, but we have been reassured by doctor after doctor; nurse after nurse; former survivor after former survivor, that yeah, this thing is really friggen’ scary, but your kid’s gonna pull out okay. We rally around that; try to stay positive and make sure we’re doing everything we can so that Beck can return to his old self.
Last night, Beckett was moved from regular pediatric care to the Pediatric Intensive Care Unit, to better monitor his rapidly changing conditions. Of utmost concern is his breathing and his oxygen levels.
I thought he was breathing slightly better today than yesterday, and several tests late this morning seem to confirm that.
It is a very realistic possibility that Beckett will be in the hospital for a month, with 14+ days almost a certainty. Beckett is warmed by gifts and cards. Some of you have asked how you can help: here’s an early first step: Send him a little something – a card, a balloon, a sign, a stuffed animal, a toy. He’s at: Beckett Baker, Cardon Children’s Medical Center, Room 224 (that could change), 1400 S. Dobson Road, Mesa, AZ 85202
Please know that I receive all of your e-mails and texts and Facebook posts and absolutely love them; but I can’t respond at this point. Also, as a courtesy, I ask that you not call us at this time; we’re keeping very odd sleeping hours and dealing with a variety of specialists, doctors and nurses at all times of the day and night. I don’t really have time to explain in a phone conversation how Beckett’s doing, or I’m doing, at this moment. But texts, Facebook posts, e-mails: I love ’em! They give me strength.
Thank you again for all your wonderful support. If and when we need help, we will call and ask. I’m not one of those people that’s too proud to ask. We suspect as Beck becomes more stable, the new reality of our life and his therapy will shape our needs in the weeks and months to come.
Warmest regards and much, much love, Ed