We are only about 17 hours into having some vague answers to the past week. If we reflect back, hindsight is 20/20. Alexander’s sleep patterns had shifted, but we thought it was just a part of him being a growing little kid.
On 5/26, Matt got a call from school that he had been hit in the head with a toy in the forehead. The teachers did a report but were not overly concerned. Matt asked to see the toy, and it was a small and light plastic tube.
On 5/29, Alexander had a small bit of nausea and vomiting in the morning not long after waking and saying his head hurt. Charlotte had recently had allergies and said her head hurt, and we thought it likely that he was repeating what she says, as he often does. We monitored him, and he went back to his usual happy self. We thought he must have eaten something that didn’t agree with him. He went to school on Tuesday, and the teachers had no concerns whatsoever. He did seem more tired than normal after school, but we thought it was because he was often waking up at night. Alexander seemed wobbly on his feet and had a fall where he hit the back of his head on the ground. We started to have some thoughts that his vomiting could be from a concussion.
On 5/31, the same thing happened in the morning not long after waking and saying his head hurt. We thought it was consistent with concussion symptoms, but he was cheerful, eating, drinking, and using the restroom normally.
On 6/2, he did the same thing again as 5/29 and 5/31. This time he vomited a small amount twice. Christy took him immediately to the ER to try to get a CT scan and some answers. A neurological assessment was done along with a strep test. The strep test was positive, and we thought we had our answer–except there was the lingering concern that the vomiting was only ever in the morning shortly after waking. He still had episodes of drowsiness.
On 6/4, we woke at the beach with our entire family. Alexander had eaten a big plate of spaghetti, played with cousins, and stayed in bed all night, albeit with some whimpering throughout the night. He woke up and vomited a small amount twice then ran around singing and playing with cousins. We were extremely confused. When he vomited a third time, we started to formulate a plan to get him to Chicago to an ER. Thank goodness we abandoned that plan. We determined that it would make sense take him to the local ER determined to have a CT scan done. A neurological assessment was done after we gave a very detailed history of the past week. It was only then that we considered the change in sleep to be a part of this.
After the doctor examined Alexander, both of us asked for a CT scan yet again. The doctor said that there was no indication for a CT scan. Christy again asked very calmly to please do a CT scan on her son. The doctor agreed. Everything moved quickly. The scan was done almost immediately with the results coming about 30 minutes later. When the doctor walked in with a nurse, we knew this was not good, but we weren’t prepared. After telling Christy to sit down, the doctor shared that Alexander has a 4.2 cm mass in the back of his brain that needs to be removed as soon as possible. We can’t describe the feelings and thoughts that overcame us at 12:45pm when hearing that news.
Then came the urgency to transfer him. The closest facility that could care for him was about two hours away in Pensacola. They were going to use ground transportation, but no transport crews could be there quickly. Then we got word that he would be airlifted, but storms prevented the helicopter from flying and forced the hospital to revert back to ground transportation. It was not until after 7pm that they picked Alexander and Matt up. Christy drove back to the beach house to retrieve luggage and then drove to Ascension Sacred Heart in Pensacola, arriving at about 11pm.
The current plan suggested by the doctor is to have an MRI of brain and spine at 8am. This will take 3-4 hours. Then, we will discuss the timing and location for an external ventricular drain and resection of the mass. They currently want to do these during the same procedure in Florida. Christy had in mind that the EVD would be done here and then head to Chicago for resection at Lurie. Matt is returning to the hospital from the Ronald McDonald House at 7:30am in advance of the MRI.
We will post again after we receive the MRI results and meet with the pediatric neurosurgeon.
