You know the proverbial clouds lifting; the 4th and goal stop on the 1, the prayers answered at that darkest moment? That happened last night in Room 224 at Cardon’s Children Medical Center.
Allow me to paint the picture.
Throughout the day Beckett had remained incredibly weak; his breathing was laborious and difficult. At 3:30 p.m., the lead doctor – the pediatric neurologist – came in and said Beckett’s condition was continuing to worsen. There are “good” versions of this disease, and really bad versions – and Beck’s was turning into the latter. He had almost zero leg mobility, only 10 percent arm mobility and his neck was weak. He could barely lift his head.
The nurses and specialists ran some tests, including one that tests the volume of air your lungs can intake. A healthy adult can suck in 60 cubic centimeters of air; a healthy child 40 cubic centimeters, at 20 cubic centimeters the lungs are not bringing in enough air to maintain the body’s vital functions; and a ventilator is needed. Beck, at 3:30, blew a 25 – dangerously close to the ventilator zone.
A ventilator is bad; it’s bulky, it’s intrusive, and with it, Beckett would lose his ability to talk. There was a real possibility that Beckett would have to be sedated; out of fear he might try to take the equipment out. It would also indicate that the disease had moved into it’s scariest phase – the one, in essence, where it paralyzes this lungs. The lead doctor, more or less said, that’s where it’s heading.
Beckett was put on tight watch; new tests were ordered; and new gadgets hooked up to test more parts of Beckett’s vital signs; including CO2 monitoring to make sure his respiratory system was properly working; not just in sucking in air, but removing the poisonous parts of it. We were warned: Be ready for Beckett to be placed on the ventilator. I think our fear reached a new level.
And then at 6 p.m., the respiratory therapist came in to run the test again. Remember how 40 cm(3) is the value for a healthy child? Beck blew a 50! – a possible indicator that maybe, just maybe, he had reached the peak and the Guillain Barre was retreating. Neither of us wanted to get our hopes up too much, because of the progress he had made the night before, but it was clearly a good sign.
And then, his condition continued to improve throughout the night. By 7:30 p.m., he could hold a PS3 controller. He slept almost 10 hours last night; peacefully. He needed oxygen, but no ventilator after all.
This morning when he woke up, Beckett took the lung test again – at typically what has been his weakest point of the day. He blew a 40 – the value of a healthy child. Slowly, too, some mobility is returning today. He has moderate head control today, he can lift his arms a bit and grab food; he’s flopping his feet around a little better and supporting some of his own weight on his feet. He “walked” with a walker down the hall with the help of some specialists. He is also complaining of pain – a sign that feeling is returning to his body; that he can feel his damaged nerves. That’s a good sign.
But he is still exceptionally weak. If you hadn’t seen his darkest point, your initial reaction might be fear or shock the first time you saw him in his bed.
As an aside, we feel absolutely blessed to have the medical team that has been responsible for Beckett’s care. He has an army of 10-15 doctors, nurses and specialists who watch over him constantly. His chief doctor, the pediatric neurologist. is one of the pioneers in the course of treatment Beckett has received. Dr. Cook’s rapid diagnosis of a rare disease has been an incredible blessing. It’s scary to think – especially with the severity of Beckett’s case – how severe his conditions might have gotten without rapid immunoglobulin treatment. His analysis was swift; his course of action clear. If you’re praying and giving thanks, please give thanks for the staff at the hospital.
Please keep in mind – this is a great, great day. But it by no means means we are out of the water – GBS is a series of peaks and valleys we’re are told; and we have already witnessed some of them; great moments of hope, followed by devastating regression. But the fact that it has retreated from the lungs and chest; and appears to have continued to stay away, has made this the best day we’ve had since this all began. We’re joyful today; seeing some of the sparks of the old Beckett. Some of our prayers have been most certainly been answered. If nothing else, it appears as if the course of treatment is having some positive results.
We’ve just been told Beckett will be removed from the intensive care unit today and moved back to a normal room. The address from yesterday’s e-mail remains the same if you wish to send something to Beckett, just leave the room number off. Just send it to Beckett Baker, Patient, Cardon Children’s Medical Center, 1400 S. Dobson Road, Mesa, AZ 85202.
We certainly don’t know what tomorrow, or the next few hours will bring, but the last 24 have been very, very, very positive. Today is the brightest day this week.
Thank you for all of your continued support and thoughts and prayers and love.
Ed, Heidi, Beckett and Brody