Out and Back

I woke up this morning feeling quite calm with only a small undercurrent of anxiety pulsing beneath the surface. I just felt that as long as I remain calm, Gavin could come through the procedure well with no ill effects.

Happily, he flew through the procedure with no trouble to speak of, and did not need to go to the room being held for him in the ICU. We tried to prepare him a little bit for what would happen. I think he was just happy to leave the room and go for a “ride” through the halls. We went downstairs to an isolation room in PACU and waited to be called to the OR.

Craig and I kept Gavin distracted and amused by getting Monkey and one of his guys to play hide and seek around the room. We explained to him that we needed to take a picture of his lungs with a small camera. Anesthesia met with us again to go over what we’d discussed last night for the care plan and our preferences for the general. Luckily, everyone agreed that Daddy could go with Bean into the OR just as I’ve accompanied him into the IGT theatre several times before. Gavin cannot be pre-sedated because he reacts badly to the drug they use for that, so it can be very traumatic for him to be wheeled away by a group of strangers. We were so thankful that the team agreed to let Daddy go with him.

Craig held Bean’s hand into the OR and made a big deal of pointing out the big “TV” screens there. Gavin asked for the remote. In just a moment he was sedated and sleeping peacefully and Craig was ushered out.

I met Craig in the surgical waiting room, where I have spent many, many an anxious hour. We killed time with coffee and very quickly Dr. Dell came to collect us, saying “Everything’s fine, everything’s fine” as she walked. I like that. Many doctors keep a poker face as they guide you into a room and make you sit down before they say anything. Those moments are excruciating.

Dr. Dell explained that the BAL had gone very, very well, and Gavin breathed comfortably on oxygen for the whole thing. They were able to collect almost all of the fluid that they put in, and didn’t see any active signs of infection or inflammation. Gavin was waiting for us in PACU, having not required any extra help breathing.

A big sigh of relief and we were off to see him. He stirred a couple of times and spoke to us in a groggy voice, but slept for about two hours there before we made the journey back to our room. All of the nurses met us with massive grins to see us return with Gavin so well.

For some reason, the BAL seemed to have helped with his breathing for a little while. We were able to lower his oxygen requirements slightly for the rest of the afternoon, but turned it up again to keep him comfortable while sleeping. His heart rate stayed lower for a while too, but now seems to have come back up.

We are still being followed closely by respiratory therapy, infectious diseases and CCRT. The cultures from the sample are growing in the lab and hopefully will show us where the issue stems from. They’ve already ruled out a very deadly form of pneumonia, which is a relief.

Gavin’s counts have also started to make a move. They’ve gone from less than 0.1 to actually 0.1 to 0.2 in a day. I hope, hope, hope that as they move his body will start to recover from whatever this is. The problem is that the doctors fear another condition in which the blood vessels in the lungs have become constricted. The only way to diagnose this is to take a lung biopsy. The only way to do that is surgery. If bean doesn’t show a strong improvement over the weekend, we will have to do this biopsy next week.

I don’t want to send my baby to the OR again. Ever. I’m completely focussed on his need for oxygen suddenly reducing and his body rapidly recovering in time to prevent this being done. We only have two days.