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Sunday, July 31, 2011

Sunday Afternoon Update

Good evening everyone. Hope your weekend is ending in some fantastic way.

Today was a tense day for us. We got a call from the hospital early this morning that they were planning to move Oakes from the oscillating vent back to the regular ventilator. By the time I got in, I missed most of the action - he had completed his pheresis for the day and they had already moved him back to the regular vent.

I talked with the attending doctor, whose name we've mentioned before - Dr. Doctor, yes, Dr. Doctor. They had been suctioning a lot of junk out of his airways, bloody mucus junk, which is one of the ways the rejection is presenting itself. He told me he thought Oakes tolerated the move to the regular ventilator pretty well. But the telling sign, he said, would be how Oakes was doing 12 hours and 24 hours out.

A few minutes later, they turned down his vent settings from 100% to 70% pressure. Within five minutes, his oxygen saturation level dropped from 94 to the mid-80s (the 90 mark is kind of the low-end of where they prefer this number). Nurse Shannon suctioned some junk out of his airways and his oxygen saturation kept dropping. They decided to "pump" suction him where they take him off the ventilator, squirt some saline solution into his airways, hoping to bring the junk up a bit, then stick a suction tube down his vent and try to capture it all. This was also scary because his oxygen was dropping during this as well and I could see all of the junk they were suctioning as it came up the tube. For maybe a half hour, they tried unsuccessfully to get his numbers back up - they suctioned some more, they re-positioned him, hooked some nitric oxide to his vent. Finally, they got him to about 88 or 89 and Dr. Doctor thought we should just let him sit for a while and over the next 45 minutes, he finally drifted back into the mid-90s.

Doc believes that he has no extra oxygen so that when he gets suctioned, it's difficult for him to breathe and that he just takes a while to recover from that. But for several hours thereafter, he was steady as can be. They weren't going to try another pump suction until this evening.

If he can somehow stay stable through tonight and into tomorrow morning, that will be the first sign that possibly, POSSIBLY the chemo medicine and the plasmapheresis might actually be starting to work in turning around the rejection. It's a long shot, but we'll know more tomorrow.

Long way to go for Oakes. I passed along all of your love to him today. Love you all.

G,B,I,O

6 comments:

  1. We are sending positive thoughts and energy your way from New York City! Stay strong Oakes - lots of people are pulling for you!
    - Morghan, Jake, Hayden (3) and Ozzie (14months)

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  2. I am a friend of Cathy Woodyard Bray, and have known about Oakes' through her. My mom and I have been praying continuously for Oakes and all the Ortyls. We also have you on our prayer list at church. Sending you all our love and God all our prayers. Debra Taylor

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  3. I am a friend of Rosemarie and Mark McShane's in Pittsburgh. My prayers surround that precious spirit with God's light and love - those sparkley eyes and that magic smile as he connected with his mother was a photo that inspired me to call it to mind with every prayer and ask God's healing powers to restore that healing Truth and Beauty to share with others. Oakes in a precious gift. God Bless. Meredith Dobson

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  4. I've been thinking of you all, all day. Those monitors can really drive you crazy... Good step for Oakes getting back on the regular vent! Sending love to all of you, strength and energy to Oakes as he continues this fight!

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  5. I am a relative of Danielle @ Elleinadspir.com and she posted about your little one in hopes of adding a few prayers and positive thoughts for you and your family. I am an RN with lots of pediatric and PICU experience. From those experiences I can share that children are the most perseverant patients I have ever known, if solely for the reason that they don't know or understand that they are ill. Even when things look the worst, they can change for the better overnight. Keep your faith and your hope and know that many others are doing the same for your baby and family. May Oakes continue to fight the good fight!!

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  6. praying for healing for sweet Oakes and for you guys as well....hoping today brings nothing but healing!

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