We have (reluctantly) settled into life on the 12th floor. The staff has been nothing but kind, but it's just still so hard to be on a patient floor when we had been utterly spoiled with the level of care we received in the NICU. Seeing so many familiar faces come visit this week has made me all kinds of emotional and even more grateful we have these amazing, generous, kind and supportive people in our lives.
Bradley did great during his surgery and the drain has been working just as they hoped. His MRI on Thursday looked great and Dr. Smyth felt the fluid pocket was about 70% resolved and his ventricles are behaving. He was confident enough that Friday morning they "clamped" the drain to see how he would react. It was so great to be able to hold him as much as we wanted! With the drain turned on, we can only clamp the drain for 30 minutes at a time and move him around. When it's turned on it has to be measured and leveled to his ear to facilitate the draining. It's been so hard to not be able to scoop him up when he's fussy, but even more so to keep him content in bed for so long but he really is such a happy heart. He made it about 10 hours before we noticed a slow leak from around the drain, he was beyond irritable and his fontanel was much more full. Neuro was called and they gave the green light to open the drain back up again. Within 15 minutes his mood was much better and his fontanel was soft once again. While I was so happy to have him feeling better, I knew what him needing the drain open again would mean. Back to the OR.
Mr. Bradley will be going back to the OR on Tuesday to revise the VA shunt he already has. Bear with me as I try to explain all of this- I am in no way a medical professional and have to have the surgeons draw me pictures to help me understand (ha!). The tubing that is currently in the ventricle will be moved into his subdural space (where the drain is now) and then the shunt tubing that is in his heart will be moved to his belly. While we weren't excited with extending our stay or him going back to the OR so soon, we know this is what he needs; and selfishly I'd rather go ahead and do it now while we're in hospital mode and in a private room rather than take him home and have to come back in 2 weeks and do it all again. So, we're making the best of it and I even decorated his room last night =)
Prayers for this week coming up for Bradley, the doctors, nurses and us as well are much appreciated =)
Emily
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