Progress...

"Be not afraid of going slowly, be afraid only of standing still."

Jacob switched to a standard ventilator on Friday. This is a huge milestone that we didn't think we would get to remotely this fast. Now that he is off the oscillator some of his swelling has gone down. He finished round one of the chemotherapy, and we've seen typical signs of side effects (low hemoglobin, fevers, low platelets) so he's been getting regular transfusions to offset this. We're unfortunately no stranger to these transfusions, as he would occasionally get them in the clinic this past year. No fever today though, so we're hopeful that those will be less frequent as the month of recovery progresses.

For a couple of days he was off the paralyzing drug (he was on this so he did not try to breathe against the ventilator), which was rough...There are heartbreaking moments when he opens his eyes, sees us and cries. This has been a brutal adjustment for us, but we need to realize that he is not feeling physical pain. We met with a doctor from pain management to discuss this. The amount of Fentanyl (sedative) he is on would sedate any of us, so we have faith that even with these occasional episodes he won't remember what's happening or feel pain. His heart rate and blood pressure have been consistently good. Sometimes when the nurses are suctioning his mouth or nose you can see his heart rate and/or blood pressure increase, which is a normal sign of agitation. He calms down pretty quickly though.

Jacob is progressing well on the ventilator...the progress isn't without some occasional steps backward though. On Sunday we had a couple of episodes where Jacob was "desatting". This means he was not getting sufficient levels of oxygen to his extremities. The oxygen saturation percentage is on his monitor (we watch this screen more often than TV), and as long as the percentage of saturation is between 90 and 100% he's doing fine. Jacob was dropping into the 80s and below during these episodes, so he needed oxygen boosts and respiratory treatments to help get him back on track. At one point the ICU doctor was "bagging" him (using a plastic pump called a "bag" to help him breathe) while they took steps to regulate his oxygen and pressure. It's beyond surreal to contemplate that the only thing keeping your son alive is this extremely mellow (but very deliberate) guy squeezing a plastic bubble. Needless to say we were happy to get past that episode. We realize that the several days of positive developments put us into a bit of a bubble, so when Jacob desatted we got completely sideswiped. And so continues the rollercoaster...

Jacob went back on the paralytic on Sunday, but will come back off it today, so we're bracing for more emotional episodes where he comes in and out of conscious sedation. If the progress continues we may be off the vent as early as next week. Let's all pray that he keeps improving. With any luck round one of chemo might yield some improvement in the liver and spleen, but as his white count is basically nil, it will be a couple of weeks before we can tell if there is any improvement. We will continue to wait and see..

We rigged the iPod to play through the remote that hangs near Jacob's head. We will likely upgrade to decent speakers, but either way if anyone wants to email songs for us to play for him, that would be very cool. Email them to reis.baron@gmail.com, or if you go nuts and send a playlist, just zip it up and send thru www.sendspace.com. Thanks again for all of your emails, Facebook messages, and kind gifts. Your collective Love and prayers are definitely sending Jacob in the right direction. Our gratitude is beyond words.

Much Love to You All...