Tuesday, August 19, 2008
Trying to get over the "hump"
Braden is starting to perk up a bit, and the nurses and therapists are getting a kick out of seeing him try to shake off the cough-assist mask, the IPV mask, or the suction by shaking his head back and forth. They still find his sad little cry a little heart-breaking and pitiful, so he's racking up some "pity points" with the staff too. Even the doctors were noticing his pathetic little cry.
When he rests, he seems to be getting some good rest, because he has lots of spunk to share when he's awake. When he decides to really give a vocal fit, it lasts about two minutes, but he really raises some eyebrows of his caregivers.
He is still on the vapotherm, but they are weaning him off the oxygen level so maybe we can try room air tomorrow if he can hold his saturation as they lower his support levels. Respiratory is still spending lots of time on him with treatments and such, but being so aggressive seems to be helping him get better. So while we can't give a definite date in which we expect to be released, we are fairly certain that it will be before the week is over.
As we've been here for awhile, it's given us a chance to consult with many of Braden's doctors and specialists, and I think we are ready as a family to start looking for more answers and discussing future procedures and probabilities. As soon as Braden has recovered from this spell, I think we will move ahead with the muscle biopsy, as it really is the last thing left to give us any sort of specific answers on what it is Braden might have, as often a biopsy can reveal things not seen in a blood or DNA test. We will probably do the bronchoscopy and other tests to see where we are with his airway and physical structure, as it is suspected Braden might always be in some state of pneumonia based on his x-rays that seem to all look suspiciously similar, but never really point to a definite pneumonia.
So pray for us, as rounds of testing can be quite wearing emotionally. And please pray for our medical team to move towards a diagnosis - we know that we may not get any answers, but feel we are closer to exhausting everything available to us to find an answer. We remain hopeful despite any anticipated prognosis, as Braden continues to do things that early on he was not expected to do. God has been so good to our family, and we have been blessed by the many who check his blog and lend their friendship, support, and prayer - we fully expect to continue to find blessings in our situation.
Thanks for sharing your love & support in our time of need,