Enter Dr. Trumble, Our New Best Friend

Dr. Trumble is a short man who looks tall. Probably because you are most likely to see him while sitting in a chair looking up at him while he reads results to you. The first time I saw him, however, was on the internet. I decided to research the man that was now in charge of Jack's monster. I searched under his name on the internet and found a website for his practice. I read about his impressive academic background and his resume. The thing that made me feel like I was going to like him though was the way he smiled for the picture on the internet. I don't know if it was my women's intuition (I have a giant corpus collosum) but I felt like I was looking at just the kind of doctor I had been hoping for all along. The kind that would talk to you as if you were a colleague with the same intellectual abilities as themself even if this wasn't the case. The kind that was sensitive to what you are going through, as if it were there own blood, and they hadn't been through this 1,000 times before and often seen much worse. The kind that didn't seem in a hurry despite an office full of patients, a Lotus in the parking lot, and brain surgery scheduled for 3 hours from the time of your appointment. The kind that sends you an e-mail with a copy of the note he is sending your pediatrician just so you are aware of what is going on behind the scenes. Dr. Trumble looked like he might be that guy and it turned out that he was that guy afterall.

Our appointment rolled around after yet another weekend of waiting, researching, and playing with Jack. By Monday, Susie and I were getting used to this. Load Jack up, head to the medical region of Orlando, pretend like we aren't worried, and prepare for what we can't prepare for and the unknown. Trumble's office is located right next to the Children's hospital where Jack was born. As we drove up we spotted a very rare car, a Lotus, that stood out in the parking lot. By far the nicest and most expensive car I have seen in, well, probably years. On the pavement in front of the car, Trumble's name was painted. Today we would purchase a few tanks of gas for our new friend and his sporty fun machine, I thought.

Jack was teething we thought and was not sleeping or eating well for the past few nights. We took him upstairs to the office waiting room, Susie checked us in, and I struggled to keep Jack entertained. The office was decorated with fish stickers all over the walls from Finding Nemo, the same movie we watched in the lobby while awaiting Jack's CT scan when this all began about 2 weeks ago. The stickers did not succeed in making the lobby any less sterile or intimidating for me. At least 5 kids waited to see the doc with various visible signs of head injury/problems. One sitting closest to us I suspect was about 10 with a very large head, probably the result of hydrocephalus or "water on the brain". Another, across the room, about 2 years old, wore a helmut. I wasn't sure why but I assumed it was the result of a head injury or possibly to protect a recent, unhealed surgery. Another child of about 8 sat with a bandage on her head looking dazed. Yet another child, a baby, sat covered in a carrier. Her mother sat talking with, who seemed likely to be, her mother. They talked about the possibility of needing to move closer to the children's hospital indicating that the problems the baby in the carrier was dealing with may be long term. Further, they commented frequently on Jack who I was attempting to placate unsuccessfully by flying him through the air to look at the fish on the walls. Eventually, both Susie and I took turns running him up and down the hallway and in and out of the lobby. Everyone eventually stopped to look at the youngest, visible patient in the lobby and comment on how cute he was. I avoided eye contact as not to engage in any conversations about his condition, know full well I could not handle hearing about their child at this point.

Finally, we were called back into the office after about 45 minutes. The examining room was just like any doctor's office over looking a lake. It was decorated for children, especially those who like Batman. A nurse, who Susie would later tell me was probably Trumble's wife based on her nametag, greeted us by asking if Jack had been there before. Not taking no for an answer, she asked if he had been in surgery before, possibly when first born? We again said no. She then said that he seemed soooo familiar to her. Somehow I was bothered by this, thinking that this meant he looked like someone who has problems with his brain...for that is who she sees all the time, I thought. She looked at him without a smile, examining him briefly with her eyes. She asked us a few questions about the shape of his head, saying his head was quite flat on the back which, of course, we were aware of but not concerned about. She then stated, that Trumble would read to us his opinions on the findings of the MRI but she added that he would also likely recommend treatment options for his head shape! Suddenly, there was more. I was refusing to even discuss his head shape for it seemed trivial at this time. She went on to mention that a "band" may be necessary adding that his head shape may even be correlated with other problems!!! She then ended with a look of worry, asking, can he move his head this way. Jack eventually turned to look at her, as if to say, "what's your problem crazy lady". She sighed in relief, indicating that this conversation wasn't going to get more convuluted and worrisome than it already had. She then told us that Trumble would be in to see us shortly and left. I was happy to see her go and Susie and I talked about her poorly for several minutes until Jack started laughing. We played with him until Trumble came in.

Trumble made his entrance, laptop on a portable desk in tow. He smiled and looked at each of us introducing himself in a very calm, pleasant, and serious manner. He then discussed the plan to review the results and asked if we would both sit with Jack. My adrenaling was flying but I was ready to sit down. He quickly indicated that he felt the news was good. He turned the laptop to face us and began talking to us about the pictures of Jack's brain/skull. An empty area above the right hemisphere, Trumble explained, indicated what amounts to a likely Arachnoid Cyst that was probably but not definitely there since birth. He then discussed the nature of these cysts as benign and that their main threat when outside of the brain is in their unpredictable nature in terms of putting pressure on the brain causing mass effects (or midline shift). He indicated that the pix indicate that this cyst seems to be putting some pressure on the brain but does not appear to have caused any mass effects or brain damage. We talked about our family hx and Jack's lack of obvious symptoms and normal development to date. Trumble indicated that before the meeting with us, he felt like surgery was probably the best option. At this point, he indicated that he felt we should wait and monitor the cyst for effects due to Jack's presentation as "normal" and without symptoms.

Trumble then changed the subject to Jack's head shape. He stated that Jack fits the dx for benign positional pagiocephaly, basically translating to misshapen head. He discussed how this happens, stating that it is due to babies sleeping on their backs. I had read about it already and was somewhat familiar. I understood it to be cosmetic only. Trumble indicated that it would be our choice to put him in a band. He then retrieved a band which was actually the same as the helmut I had seen earlier on the child in the lobby. He said, as long as Jack doesn't wear his hair like me (completely bald) then it probably wouldn't even be noticeable once his hair grew in. However, he added that he recommended we start it soon or else it would be too late as the skull would become hardened and less maleable. We asked to think about it and wait, indicating we were doing everything possible already to reduce the time he was laying on his back. He indicated that this was a good strategy and gave us a script for the helmut if we chose to go that route within the month.

Quickly, I changed my attention back to the cyst. Trumble indicated that if he needed to do surgery he thought the procedure would be relatively uncomplicated. He then indicated that the cyst WAS in a very unusual location and presented some possible problems with regard to fenestration (draining) which may warrant the placement of a shunt. He added though that either way he felt it would go well and we should wait, get an MRI again in 3 months, and reexamine the results at that point. He seemed confident and, therefore, I felt more confident. I then asked how we would no if the cyst was creating problems, like the possible brain damage or midline shift he had referred to. He then indicated that at Jack's age this would not be easy suggesting that it would most likely result in changes in eating and sleeping habits as well as moodiness and eventually it would effect his development and motor skills. I told him about the teething symptoms sounding very similar to the first few signs he mentioned and he agreed that there was no easy way to know. I asked, if there were signs of effects on the brain what would the consequences be, in other words, would brain damage be irreversible? He indicated that as long as we continue to monitor him, no, any damage would not have long term effects and would correct itself following surgery.

The session ended. We discussed our possible plan to change pediatricians and became aware that Trumble had had breakfast with Kalter the day before. He did however seem to fully understand. He acknowledged the predicament we were in wanting quality of treatment along with social mores. Then, our new friend left. I stopped him and thanked him for taking us on such short notice. I also gave him a hook'em horns from Jack...he was a Texas alum where he received his bachelors. He seemed amused as I told him Jack wanted to get on his good side. I then thanked him again especially for giving us the news through the grapevine days ago that helped make things that much more bearable over the weekend while waiting to see him. He said something to the effect of, you don't go to a brain doctor because you want to go to a brain doctor. Somewhere during our meeting he had told us that he had 7 kids. This is a man who must really like some kids. Before we left Susie and I would both shed some happy tears. The news was good. Jack wasn't done yet but the news was good.

That night, we would get an e-mail from Trumble copying us on the letter summarizing our session which he was sending to our pediatrician, Kalter. Suddenly, I felt like we were in control again. The conspiracy was no longer holding together. At the same time, I began to realize, this thing was possibly going to go on for years to come.