In the lobby of the Cleveland Clinic is a projection of a tree that transitions through the four seasons. Spring, Summer, Fall and Winter. We arrived in Cleveland to cold weather and snow on February 20th and left to 70-degree weather on March 17th.
Sadie arrived at the Surgery Center at 5:30 am on Thursday, February 23rd. I carried her into the surgery room at approximately 7:30 am. I was able to stay with her until she fell asleep from the anesthesia. Leaving her was one of the most difficult moments of my life. Surgery lasted approximately 5 1/2 hours. We waited in the surgical lobby and received periodic updates via pager.
Except for needing a bit of a blood transfusion, the surgery itself went fine. Following the procedure, Sadie's surgeon, Dr. Bingamin, provided us with an update on the procedure. He mentioned that the structure of her brain is a little smaller than is expected of a toddler her age (microcephaly). We weren't terribly surprised, knowing that this is common for girls with Aicardi Syndrome. He explained some of the work they did during surgery, mentioning the use of electrodes on the brain tissue during surgery to see which areas were emitting seizure activity. He mentioned that her most malformed area in the frontal lobe was constantly spiking with electrical discharges.
The photo above shows what Sadie looked like post-surgery - puffy and pale. While the surgery itself went as expected, Sadie's recovery was quite difficult. As she awoke from surgery, she began having a few seizures - full body convulsions that we had not seen before, which began on the right side of her body. Apparently this is not uncommon for kiddos who have undergone brain surgery due to the trauma to the brain tissue. Still a little disheartening.
She was given a number of different emergency meds to stop the seizures. Dr. Bingamin also ordered a CT scan to check for bleeding, which came back normal. Due to the additional seizure meds, there were a few days where we were extremely concerned that Sadie would not be able to continue breathing on her own. Which means intubation and be placement on a ventilator. In fact, we had a ventilator hanging out in her room in the PICU for quite a while.
Sadie also had some trouble post-surgery with nausea. She was vomiting for a few days after surgery, so much so that docs didn't even try giving her any nutrition until 5 days post-surgery. And, even then, they just placed her on a TPN IV bag (a type of nutrition that goes directly into her bloodstream via IV). Sadie's nausea and strange right-sided movements continued for a few days post-surgery.
On Saturday, they removed her head bandaging revealing her scar, which was shaped like the upper part of a question mark looping from her right ear around the side/back of her head and around down the middle. Immediately after removing her head bandaging, Sadie was hooked up to a Video EEG to monitor her brain waves. It was Saturday that we learned Sadie was in "status epilepticus" or constant seizure. She was then placed on additional medication and the risk of breathing impairment increased.
Sadie stayed in status epilepticus for a few days until her brain slowly calmed down. She stayed on the Video EEG for a total of 12 days until the docs felt comfortable enough to take her off.
Meanwhile, she did have a bit of trouble breathing and required a few treatments by respiratory therapy, but luckily no intubation was required. She also suffered from some issues with her belly being full and distended, requiring docs to place an NG tube to pull some of the excess "juice" out of her belly. Sadie also had a feeding tube (ND or "CorePack" tube) placed which went directly into her intestine, this was used to administer medicines and to feed her formula.
After her central line was taken out of her neck, she received a PICC line in her arm. A PICC line is basically an IV that is meant for long-term administration of IV drugs, it also can be used to pull blood, so the child doesn't have to be continuously poked. Sadie was put under anesthesia and intubated for the placement of the PICC line.
Originally, GI docs wanted to conduct a gastric emptying study and a swallow study. After a little prodding by mommy and daddy, the tests were cancelled and replaced by a simple bedside swallow evaluation, which Sadie passed with flying colors. We began to feed her orally about 2 1/2 weeks after surgery. While her suck was a little weak, she quickly regained this skill and is again eating like a champ.
In addition to Sadie's brain surgery, she also had two additional diagnostic procedures performed - a spinal tap and a skin biopsy - to test for an underlying mitochondrial disease. We have some preliminary feedback from the spinal tap that no mitochondrial abnormalities were found, but we are awaiting final results, as well as the skin biopsy results.
We were hoping to transfer Sadie into an inpatient rehab facility, but after a few days of fighting with the insurance company, they denied her transfer. We will be starting a day rehab program with Sadie this week.
Overall, Sadie performed in her typical super-hero fashion. Lots of pokes, prods, tests, wires, cords, etc. but she still managed to give smiles to Mommy and Daddy. We're not quite sure where things will end up post-surgery. It will take some time to know for sure. So far, she's been very vocal, very interactive, very happy, and while the seizures still remain - they are less frequent and less severe.
After twenty-seven long days in Cleveland, we are enjoying the beautiful Chicago Spring and are happy to be home.