Day 71 - August 25 - A breath of fresh air

Today marks 10 weeks in Fresno. Woohoo! We started the day praying that today, God would give Connor some improvement, some thing that the boy could do, that would be a big encouragement and sign of hope. Here's how the day has gone:

So far, the insurance battle hasn't materialized yet. Our case workers have taken the information we dug up and are running with it. So far there hasn't been an explosion at Blue Cross, so that's good too. I expect we have fun insurance times ahead, but for now they're still over the horizon.

We did rule Chicago out for now, as they don't wean patients from ventilators. They work with vent-dependent patients, but don't do weaning. Seattle may have a bed available in early September (is it almost September already? Yipes!), but hasn't yet agreed to take the boy, either. Rancho los Amigos in LA is interested, but is not in the insurance's Preferred Provider network. So the saga continues...

Connor had a busy day today - first, he had his CT scan this morning, with no results available yet. We're confident that all is good in that regard. Then, the boy worked with an occupational therapist on range-of-motion, and he is really flexible and limber - nothing is getting tight, which is a monstrous blessing. After that, the physical therapist stepped in on his own time and helped get Connor into a foot-down sitting position in his bed, to help him get used to the sitting position again. Connor sat that way for a couple of hours, even having his chinese food for lunch while sitting up. So that was really good.

After that, he had a visit from a wonderful new friend with whom God has blessed us. This fellow is a nurse and RT who worked with Connor a month or so ago, for one day, but who has become a friend, dropping in after work or on his day off to encourage the boy and pray with him. Today, he noticed that Connor was initiating breaths fairly regularly, and spoke with us about some tests that we could have the RT do. He really encouraged and lifted up the boy with his visit and his prayers.

After the visit, Connor had two more big events - first, his RT came by for the afternoon treatment, and then his speech therapist worked with him on the speaking valve. Connor completed about a half hour on the valve; he was exhausted by his day, and the speech therapist didn't want to wear him out too much, so they stopped at 30. The big news of the day, however, came out of the RT's time.

Connor's vent settings have remained steady on 24% O2 with a PEEP of 2, and programmed for 10 respirations a minute. We have been seeing the boy pull 11 to 13 breaths a minute on occasion, and so we spoke with the RT about the things we'd discussed earlier with our friend. She told us that the record showed they had tried to test Connor's ability to breath on his own early on, and had quit trying to wean him. When we asked her about the possibility of testing again, she decided to try a little test of her own. She switched the vent over to a pressure setting (instead of whatever setting he's currently on), and dialed the machine down to it's lowest setting, five breaths per minute. For the two minutes she left the machine that way, Connor drew 10 breaths a minute with no effort, even though the machine was set to a minimum of five. This means that the boy was initiating his own breathing, which means (if I understand it correctly) that at the very least, the signal to breathe is getting from his brain to his diaphragm! Oh yeah - this was all happening while Connor was almost asleep - he wasn't struggling to make it happen, it just was! Like it's supposed to! Praise the Lord.

He wasn't using his shoulders to breath. His breathing appeared normal from the outside, and when the RT saw this, she said "Oh yeah, we're doing the test tomorrow!" So Tuesday they're going to do a real, longer-duration test to see how much volume he can pull, and to see how long he can continue. I suppose they usually see this as a long road back to breathing completely. I'm praying he passes this test like he passed his swallow eval - with flying colors. We're also praying that this is THE sign that Connor is completely wean-able from the ventilator. Pray with us!

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