So, it's official: The tumor is gone! The neurosurgeon told us he got every bit he could have with surgical microscopes. This surgery was just as long as the last one, about 12 hours. But, there was no excessive bleeding and she did not have to have transfusions like last time. It got pretty tedious to wait, since they told us at 3:30 they were beginning to close...and then it took another 7 hours to actually finish. But, the complications were minor; the surgeon explained the delay by telling us the skull piece that had been removed was beginning to shrink and wasn't fitting properly...I guess that's minor to him! He assured us that, as Auntie Lindi put it, Humpty Dumpty is back together, and she should have just as strong a skull as everyone else.
No blood transfusions has made a HUGE difference in her recovery. Last time, we didn't see her eyes for two days as they were so swollen. Her face, arms and legs were swollen. She was lethargic. Not this time. Today, she has had her eyes wide open all day. Her face, arms, and legs are normal looking and fmoving all over. She still has the breathing tube, but she is breathing strong on her own. She is active and alert. She is amazing!
However, active and alert is difficult for her right now, as she is tethered down. As I write this, the nurse is taping yet another board to stabilize the IV in her kicking leg. She is covered in tape, bandages, tubes and wires. The current count: breathing tube, 2 spinal fluid drains stitched into her head, NJ tube, PICC line, arterial line, 2 IVs, catheter, heart rate monitor (3), pulse ox monitor, bed temperature monitor. That is 14 connections. To top it all off, she has been on EEG all day, so the wires and headdress are sticking out of her bandages. Hopefully, things will start disappearing through the night as she proves to the doctors that she can handle it.
The next few days are critical. We don't know if the seizures have returned. Swelling is heaviest at 48 hours post-op. We are not out of the woods yet. Plus, it looks like she will have yet another surgery next week, this time to have a shunt placed. A shunt drains spinal fluid from the brain into other organs when the natural drains can't keep up. It will be implanted under the skin of her head and will lead through her chest (we aren't sure where it will end yet). This is a relatively common procedure, and should not pose long-term complications for Scarlett. It can get infected or stop draining properly, so further surgery may be necessary. This is a small concern compared to where we have been, so we are just happy to know it will keep her head from swelling.
Once surgeries are over and she is well onto healing, we will move to the next major obstacle to her treatment: chemotherapy. I have been reading up on what this process may be like, and it is not pretty. We are looking at months of treatment, inpatient and outpatient care, home nursing and a very sick, very fragile baby. In addition, the ongoing restriction to her movement and muscle development will require physical therapy and occupational therapy in the short term; more therapy may be necessary as she continue to grow and may show developmental or physical delays.
It is overwhelming to think about, so we try to stay in the present. She made it through surgery. The tumor is GONE!