Tuesday's happenings

We've been here two weeks. It's hard to believe. On May 14, I dropped off a care package to a RR mom who was here at SMH with her daughter. Never ever did I believe that less than 24 hours later, we would be back for our own extended stay with Maia. I understand now how time seems to blur, it feels like we've been here for maybe a week. Anyway... here's what happened today.

The big news is that Neurosurgery and Infectious Diseases have agreed that the Maia's shunt can be replaced tomorrow.  Dr. W (Maia's regular neurosurgeon who has been out of town) stopped by this morning. He said that usually they like to put the shunt in a different location after there has been an infection. He doesn't know yet if it will go in the right or left ventricle. The external drain will be removed at the same time. Antibiotics will continue for approximately 24 hours after the shunt is replaced. We anticipate being in the ICU for a day or so after the revision and then transfer to the general care unit. I think I will actually be sad about leaving behind the wonderful nurses who have cared for Maia (and us) since her admission.

Dr. S (Maia's spina bifida physician) also came by this morning. She's also an adoptive mom of a precious little girl from Russia so I feel a special connection with her. Dr. S had seen Maia at the Bikes for Everybody event the week before her seizure and knows her well. She told me that when she got notification of Maia's hospitalization, she had said "That can't be my Maia!" I lost it when she asked how things were going.

The issue that no one seems to want to talk about is Maia's cognitive and functional status. Dr. W said that from his perspective, Maia should be able to go home within a couple of days as long as she remained stable. One of the other physicians (I think maybe someone from ID, but I can't remember) again commented about Maia being nearly back to her baseline. What????????????  She is SO far from her pre-seizure self that sometimes it doesn't even feel like she's the same child. I thought about that yesterday when I was at home. Yes, she is still my sweet girl. Yes, I still love her with that deep momma's love.  But, she will not come home the Maia that left our house that morning. And I am not the same momma who left the house that day in the ambulance with Maia.

But... me aside for now, Maia is functioning much at the infant level. Her body is quite deconditioned. I held her on my lap for some music therapy this afternoon and she is not able to hold her head up by herself. Although she attempts to move her arms and legs purposefully, Maia is not able to perform any meaningful activities with them. She giggles at times and cries, but this is the extent of her communication with us. I can sense her frustration when she wants to grab something or perhaps try to speak but is unable to. It is heartbreaking to hear her cries of anxiety and stress. Although I try to comfort her, there are times when she is inconsolable. Mark and I both feel so very helpless. The occupational therapist was here this afternoon and we did get Maia up in a supported chair. She was not real thrilled with this, but did quiet down while the therapist sang to her.

I was able to hold Maia for a while this afternoon and she cuddled in close, dozing on my chest for a short time before getting cranky. I treasure those precious moments.

Dr. S is going to inquire about the possibility of inpatient rehabilitation for Maia following her surgery. We are praying this will be an option for her. Although it will require more time in the hospital, the intense therapy may provide additional benefits that she would not have going home with outpatient therapy.

So, that's today's scoop. We are maintaining. Thankful for the support of our friends and family and all of you!