-March 13, 2017
On this day, exactly one year ago, Brooks woke from a short nap. He was fussy and tired. I noticed that one of his eyes didn’t shut all the way. I assumed (hoped) it was just related to being fatigued. I was distracted because I was rushing the boys out of the door to meet our friends at the National Air and Space Museum. The boys had an awesome time running around the open spaces under the aircraft. My friend, Stacy and I enjoyed some necessary grown-up conversation. We made plans to have similar field trips at least once a month with each other…
Within two days of this trip, it was clear that there was something wrong with Brooks’ face. We took him to our pediatrician. The good doctor took one look at Brooks and said, “Go to the ER at Children’s National right now.”
I will not take the time to relay the emotions of that visit… everyone knows how taxing the emergency room can be with small children. One of the doctors, who met with us briefly, hinted that he thought we should get Brooks in for a pet scan that afternoon. Another doctor did a full examination and determined that Brooks had “Bells Palsy” (paralysis or weakness of the muscles on one side of his face). They took a blood sample. We breathed a sigh of relief. We were sent home with a 5-day course of steroid and a follow-up appointment with their neurology department.
The steroids worked (or so we thought).
I had previously scheduled an a trip to Florida to visit my mom and stepfather. The doctors said it was okay to go and that we could follow up with the neurologist when we returned home. Max, Brooks and I headed south for a reprieve from the winter. Erich stayed to finance the operation.
On this trip, the paralysis returned. I called the neurology department at Children’s to report. Looking back on that conversation, there was some alarm in the nurse’s voice as we spoke, but it didn’t quite register at the time. Our follow-up appointment was expedited to Monday, March 28.
Erich exchanged emails with the neurologist prior to our visit. In one of the emails, the doctor said: “The electrolytes, liver and kidney panel were normal except the value of alkaline phosphate which is 1800. That’s quite elevated out of the normal range. Alkaline phosphate is a mineral found in bones so it’s unusual that Brooks level is so elevated when he has no issues with bones.”
We didn’t know what that meant but Erich made some assumptions…
The night before our neurology appointment, Erich told me not to give Brooks anymore ibuprofen because it could have caused this blood abnormality. I had already given him Advil that evening and many of the nights prior. (He had been getting so much ibuprofen because I thought he was having teething pain.) I stayed up all night worried that I had poisoned Brooks by giving him too much Advil.
During our appointment, I really don’t remember much of what was discussed. I know it was scary but I was in denial that anything tragic could happen to my family. I know the doctor examined Brooks and that she ordered us to get another blood sample. Because the initial specimen showed such a high level of alkaline phosphate, she wanted to make sure it was not simply an error. She also set up a MRI for the morning of Wednesday, March 30.
That day, March 30, 2016 was the second worst day of my life.
Erich dropped Brooks and I off at the hospital in the morning. I was stressed because Brooks had to go under anesthesia and he was hungry and agitated. Keeping Brooks distracted during the hours leading up to the MRI was my biggest fear at the time! Erich had to work. He would pick Max up from school and I would take an uber home when Brooks woke from his MRI.
I knew something was wrong when they didn’t come to get me after 30-45 minutes as was indicated.
I don’t remember how long I waited or who came to get me but I remember the amazing nurse who was there when one of the doctors told me they had found a suspicious mass. Brooks had to be put under deeper anesthesia because the mass discovery required a pet scan. Brooks was not yet back from these procedures. It was just me and this sweet and beautiful nurse, Jenny. She held my hand and gave me a hug and tried to find the right thing to say to someone when there are no words to say.
I called Erich and told him through tears that he needed to come back. I know we made arrangements for Max but I don’t remember what they were. I do remember Erich getting to the hospital and giving me a hug trying to make me feel better. It didn’t work. Brooks was still not back from his pet scan. All I wanted to do was hold my baby and tell him everything was going to be okay.
The doctors came in and told us that they scheduled a biopsy of the mass for the following morning. Brooks and I would be spending the night in the hospital. That night would be the first of many endless nights at Children’s.
When Brooks was finally wheeled in on the surgical bed, hooked up to IVs and with a breathing mask covering his face, he was sleeping. He looked like an angel. He was so innocent and helpless. I finally got to hold him in my arms and I haven’t let go since.