(This post was started yesterday, Monday, July 25, but just never got posted....better late than never!)
I am happy to report we are still getting the thumbs up at 36 hours after Oakes got his 'second wind'. Today Oakes completed his third round of Pherisis with no issue at all. Today his treatment lasted about two and a half hours again, so his Pheresis nurse and I were just chatting it up most of the time. (She grew up blocks from our house and we have several mutual friends!)
Since yesterday Oakes urine output has increased greatly, which we were hoping would happen, so that has been great. He is also about to get a drip of milk in his tummy, and as Mom, I am thrilled. He hasn't had anything in that little tummy since last Thursday at 3pm. Oakes has also come off of his paralytic medicine so he is moving a bit.
The one significant change from yesterday is that Oakes is waking up. His paralytic meds are off completely now and with the sedation med wean he is waking up and moving. After previous procedures weaning his drugs and waking his up comfortably has been an issue and that has not changed. So far as Oakes has been waking up he has been extremely agitated. Around 11am today he started to wake up and his sweet nurse, Carly mentioned to me that he was opening his eyes. I jumped to his bedside and got right in his line of sight. He was just blinking a bit and squirming. Quickly tears formed in the corner of his eyes (break my heart!) and he turned bright red. I simply stroked his head and sweetly talked to him hoping to comfort and calm him but quickly I could tell that he was turning darker red, then a bit purple and finally completely blue with his eyes rolling back in his head. At dark read and stood up to get a good look at him, by purple I was calling for help and at blue I was completely freaking out! When I first went to Oakes' bedside his nurse had been drawing blood to run labs, and when Oakes was first going into distress she had just walked out of the room. When I stuck my head in the hall to call for help I didn't see anyone, but people definitely heard me. It seems like minutes were passing as I stood and watched Oakes struggle to breath, but I am sure it was only seconds. When I turned to look out of his room a second time there must have been 12 people frantically putting on gloves, masks and gowns. Immediately, his vent was disconnected and the nurse had bagged him, she was manually trying to force air into his airway, but it was obstructed so she suctioned him and pulled out lots of secretions and 'plugs'. Very quickly Oakes looked better. His color returned to "perfect baby pink" and he looked restful and comfortable. I on the other had was still freaking out. I had tears in my eyes and adrenaline in my veins. I was standing at the foot of his crib shifting my weight from side to side and at some point in the episode I had to consciously tell myself NOT to pee in my pants!
It is now 5pm and Oakes has had several more episodes. None as scary as the first, but still completely nerve racking.
The attending doctor, Dr. York, has shared with me that the plugs and the 'junk' in his airway and lungs are to be expected and this is a necessary evil right now. She shared that things may get a little worse before they get better. The good news is that Oakes' body is healing. He can identify that he needs to cough and move this yucky junk. The bad news is that there more be a few more scary episodes before we have moved beyond this point.
We have spent most of Oakes' life in the corner of this fantastic and awful 7th floor. Oakes has clearly needed to be here all of that time, but we have had lots of uneventful days and nights where he has been restful and sweet. Most of the time he has followed the course that his doctors have predicted. You have all heard about them and have seen the pictures. It just has been so completely in my face today that today, and tonight and the days to come Oakes really needs intensive care. He needs someone watching him breath and assisting him as he slowly heals.
We will be praying that Oakes finds his way to his usual slow but steady healing!