After Surgery Complications

After surgery we were back in the room with Barnaby and he was sleepy and kind of staring off into space barely blinking as he came out of anesthesia.  Ana and I were both exhausted and hungry, we had gotten here early this morning and done a lot of stressful waiting so we went to eat some late lunch at Deborah’s house. 

At some point we got a call from his Nurse asking us to come back in quickly. Not a good phone call to receive. The information was vague: suspected seizures.

It was a very stressful car ride in traffic that ended with me throwing my keys to the valet and chasing Ana as she ran through the hospital to get to his room. 

We arrived before Dr. Warf did but his team from Bringham and Women’s was all gathered and frankly confused. He was doing what looked to me like crazy dance moves, throwing his arms and legs around and looking wide eyed around the room with an apparent look of confusion. His heart rate had gone way up, his blood pressure was high, and he suddenly had a fever. 

They suspected seizures and they wanted to know whether there had been a potential complication with his brain surgery or a reaction to anesthesia or something else all together.

As a precaution he got a loading dose of Phenobarbital. 

They rushed in a head ultrasound and his surgeon from earlier today Dr. Warf arrived to oversee it. He confirmed that the subgaleal shunt was properly placed and functioning well and there were no hemorrhages or other brain abnormalities.

There were neurology doctors in his room that I hadn’t seen since his birth and everybody was doing a lot of conferencing. 

Next they fixed a EEG (sticky pads around his scalp) and Dr. El-Dib, who everybody around here holds in high regard, seemed to think that what he was seeing were not actually seizures. 

Meanwhile Barnaby was still thrashing about quite a bit in little spells every few minutes that lasted a couple of seconds. Dr. Maggie Savage, another neural specialist who wore cute pins of cartoon  brains on her ID lanyard, agreed that this might not be seizures at all. 

Dr. Warf also said that observationally this looked like something else all together and mentioned a reaction to inhaled anesthesia called Malignant Hyperthermia that is hereditary and matches his symptoms, especially the fever, but is very rare in children and has only one documented case in premies. There is a drug that is used to treat it but nobody had ever given it to an infant before let alone a premie and phone calls were being made to expert pharmacists to consult. Ultimately it was deemed too risky and in the meantime Barnaby’s fever had come down, his rate was declining and his blood pressure had returned to normal so all of the actual problematic issues had resolved. 

His little dance breaks seem to be spacing out more and more and getting less spastic.  There is a potential blanket diagnosis that is “cortical irritability” which basically just means that his brain had a stress that is causing seizure like symptoms but that isn’t a perfect fit either. 

Also worth mentioning that Ana remembered that Jasmin has had complications to anesthesia and we got Jasmin on FaceTime with his doctors who asked her a lot of very pointed questions about her experiences to explore the heritable link. 

His vital signs are all very stable and he doesn’t appear to be in any immediate danger, his ventricles are already smaller so the surgery was successful on that front at least. 

It has been another very long day into night with our guy.