MRI

Here's a picture of Jamesie in the hospital. No matter what happened, James always kept his smile. We were very proud of him.

I had an MRI on Friday. I showed up late, despite the two or three phone calls I'd received (and screened to voicemail) telling me I needed to be there at 11:45 to get prepared. I showed up at 12:20. I was in court in the morning. However, I made no effort to leave early and committed to the hearing knowing full well it would probably cause me to run late. I'm wearing a suit and carrying my briefcase, trying to look for all the world like someone who does not belong in a hospital. I sit in the corner and whip out my phone in a studious attempt to pretend that I am somewhere else. I spend mere seconds filling out the paperwork, scrawling N/A at the top of the form and running a line down the length of the page, hastily sketched initials in place of a full signature. JMS, scribble.

I'd been tacitly avoiding the whole premise of the MRI since my doctor first told me I needed to have it. Of course I've had MRIs before- especially brain/brain stem MRIs. To get an MRI of your inner ear, there's really no other option. But not since James, and not so near where he had his, tucked away in another corner of UT Southwestern's medical center. Like his doctors, mine works and teaches at the medical school, a member of the small cadre of doctors who treat my particular condition. Microtia is just common enough that you can find at least one good doctor in most cities with a medical school. They all know each other, and are a welcome respite from run of the mill ENTs who often have no idea what they're talking about. In the waiting room there's a young boy who looks like he's on his second or third surgery. I remember the stages. This is what I worried about when Kara was pregnant, that James would be born like me. It's generally understood as a congenital, not genetic, birth defect, but the recurrence rate is much greater amongst family members than the general population. I had them check his ears at each ultrasound and still remember the palpable sense of relief I felt when he was born, running my fingers over his little ears and nose. Perfect. It never occurred to me to worry about cancer. I didn't know any better.

I consider asking my doctor whether or not he knows any of James' doctors. He would have to interact with pediatricians frequently, though I can't imagine he'd have much cause to talk to the oncologists. He called me James at our first appointment, mistaking my first name for my actual name. It's a common mistake and something that never used to bother me. I often didn't even bother to correct people I didn't think I'd see often. I always correct people now. To his credit, he either remembers or makes a note because at our second appointment he calls me Matthew. I like him already. He's mastered the low-key, candid approach that marks good bedside manner, at least for me.

I know the MRI is coming. My hearing is a little worse and I'm experiencing tinnitus in both ears. I'm also overdue as I neglected having one done after my last surgery three years ago. There really aren't a lot of other diagnostic options. There are any number of potential causes, from little cysts to something blocking my ear canal. Brain tumors are far, far down the list. The most likely cause is nothing in particular. I pick the last date proposed to me and tell no one but Kara.

The truth is just going over there bothers me a little. I take the same exit we used when James was sick, drive under the walkway that links Children's to the parking garages, the one with the Starbucks nestled awkwardly at its mouth. Past the garden where we had James' last photo shoot. I know where each and every one of his rooms is in the building, I remember every view. It's strange coming here for anything else, even though I'm going to another part of the medical center I feel the old routine tugging at me, wondering which garage I should park in and hoping my weekly pass hasn't expired.

Even though I'm over thirty minutes late, there's no delay in the MRI. If anything my tardiness means they're rushing me. The nurse takes my lateness as ignorance, because she's lecturing me sternly on what I can and cannot have on me during the MRI. I don't bother to tell her how many times I've heard the lecture or that the last time I heard that lecture my only question was how they would manage my son's IVs and needles during the procedure. He had three or four at the time. For his very last MRI, there was no lecture. It was understood that we knew. She's mad at me for being late and I give her no reason not to be. I rather prefer it this way, the less conversation between us means the less opportunities for me to remember. She flubs the first IV attempt because she picks the wrong vein and is a little too aggressive on the second. I mention that people usually have more success with my left arm and point her to the spot. She tries that and it works. My usual fear of needles is weirdly absent. I remember the way James started to squirm away from needles and nurses, his little body recoiling from being hurt again. I feel guilty.

The MRI is loud. My head nestled in a larger version of the football helmet like retainer that James had to wear. Though he was always sedated for his MRIs I can't help but wonder if the sound bothered him. At first it sounds a bit like a discordant orchestra tuning, all rhythm and no melody. Then a steady drumming, magnets whirring. They've added a mirror that provides a view of the window to alleviate claustrophobia. I appreciate that. I keep thinking of watching them take James back and the cheerful coloring of the MRIs at children's. I hope he slept through it. I hope he wasn't scared when I wasn't there to comfort him. As we walk out I catch a glimpse of my brain on the screens, looking just as it should. No tumor for me. I catch myself comparing it to James' last MRI, the tendrils of tumor wrapping around his skull, spilling down his spine. I wonder yet again why God wouldn't let us trade.

Afterwards I make my way to the doctors to confirm what I already know. The MRI looks fine, he hasn't looked at the full report yet but no worries so far. There's no reason aside from the one I was born with that things are getting a little worse. He even has good news. He points out that there's a new hearing aid on the market that could restore hearing to my bad ear. I make an appointment to check it out and am surprisingly interested, though it's hard to be interested in experiencing something you've never missed. He gives me a supplement for tinnitus that works for some people, though as he points out in a refreshing moment of honesty the only real treatment is to get used to it. I mostly have. I'm not all that worried about it.

I've been to appointments like this before, had these kind of procedures. Since James died though, it's like the only way I can view many things, including medicine, is through what happened to him. All the benchmarks set by childhood have been replaced with those few short weeks. It makes it difficult, because I catch all the memories coming back to me each time, though I know they shouldn't. These are unrelated things, I tell myself, but still I find myself subconsciously making links, drawing myself back there. It's yet another symptom of the post-James world. Nothing is the same, everything is different. I am different. Yet as I go through all of these different experiences, I do think things are getting better. Going through James related things, like an MRI identical to the ones he had, is not easy. But afterwards I feel better. I feel less afraid of them than before, more convinced that the new benchmarks don't necessarily represent inescapable lows. I feel less avoidant, less inclined to nearly blow off an MRI or show up thirty minutes late. Different does not have to be worse. I take comfort in that.

Thank all of you for your continued thoughts and prayers.

Kara and James

This is a picture of pregnant Kara. She was radiant.

Kara worries a lot. She worries about things that would never even appear on my radar, like matching clothes and ottoman throws. She worries about people more than I do. I am often more selfish, more indulgent to put it mildly. I don't usually worry, I tend to assume that everything will work out in the end, one way or another. Kara once found a flight to Germany on the cheap over spring break when I was in law school- nestled perfectly between exams and deadlines that demanded my full attention. She thought it might be fun. I decided, somewhat whimsically, that we should go to Germany. I responded in what might be described as a typically Matthew way- somewhat impulsively but decisively. I tracked down the flight, compared alternatives, and within a week or two was mercilessly scouring travel sites for the trip we’d be taking to Germany over springbreak, law school or no, and regardless of the fact that we couldn’t actually afford it then. I am more easily distracted, and much less practical. She is more grounded, more level headed, and a thousand times more practical. We go to test drive a car and I buy it then and there, provided I walk away with what my research and I consider a "win." Kara would never do that.

All of this is to say that Kara and I are complete opposites, in almost every way. Our approach to parenting was no different. I will freely admit that I was terrified of becoming a father. Anxious, excited, yes, but also deeply terrified. While I love my father dearly and admire him, when I was young we were never really close. We simply didn’t have a lot in common. In terms of temperament, we were never anything alike. When I was younger I was often difficult, broody and introspective with a quick temper. My father is gregarious and quick to make friends. If he wanted to talk baseball, I wanted to talk history or politics. If he wanted us to play golf together, I quit playing on general principle. When we learned Kara was pregnant, I hoped for a girl, because I wasn't sure I knew how to foster a good father-son bond. Kara was the only person who thought it would be a boy- and as always, Kara was right.

Especially during the first few months of James’ life, I found it hard to adjust to fatherhood. I had no idea what to do. I loved James with all of my heart, but I made a lot of very poor decisions. I struggled with my role, with how to act and what to do. If it had been up to me alone, James probably wouldn't have done so well. But it wasn’t. James had Kara too. He had her calming, steady presence to look after him. And she did. Kara mentioned once that she never spent more than a few hours away from James. That was not the case with me. I spent days and days away from James. I have many regrets. More than once I told myself that if I missed x, y, or z it would be fine- I had a lifetime to make up for it. I was wrong, in every possible way.

I got better. It took a while to sink in, but fatherhood grew on me. My fears ebbed and I grew into my role. I embraced it as mine, not anyone else’s, and did the best I could. I came to realize I didn't need to be anyone's vision of a father, just James'. James and I developed our own rapport of actions and habits apart from Kara. Games like boom goes the baby, where I’d send him soaring higher into the air than his mother would ever allow. He was a huge fan of my swing pushing style. We had our own collection of nicknames and vocabulary. I called him little son. I'm not very original. We got to know each other better. Eventually, it became impossible for Kara and I both to imagine what our lives would have been like any other way, with a daughter or with any baby but James, with all of his unique quirks and characteristics. Even when he got sick, I always resented people who in passing would treat him and other babies as if they were interchangeable, from absent minded respiratory therapists insisting they "always" do this to the lazier general (not neuro)anesthesiology nurse who failed to notice the sex of the child she was about to operate on. People often forget that even at eight months old, a baby is more than that- each is a person, slowly acquiring the traits that will define them.

Kara was instinctively and naturally brilliant with James. A love poured from her for him that was a privilege to see. Her precious baby boy, from the first moment in the hospital when I held him against her chest. She knew to do all the little things that I did not, and performed them flawlessly. I learned a lot from her example.

When James became ill, Kara led by example. No crying in James' room, bright faces and games for Jamesie. Our disparate styles became an advantage, as each of us processed the information in our own way, so that we could inform the other. Our perspectives often differed, but they informed one another. We learned from each other, and because we were different, we were able to be strong at different times, which often translated into the right times. We could lean on each other, so that both of us could be there for James. We were finally fully functional. And none of it would have happened without Kara, indeed, most of the best and most perfect moments of James’ life are impossible to imagine without Kara.

There is no one on this Earth with whom I would have preferred to go through that with. And there is no one who could have endured it so perfectly. Kara is, by any definition of the word, a fantastic mother. I truly believe that God chose her to be James’ mother because he knew how extraordinary a mother James would need, and he knew that Kara could provide that to him. I am grateful for that, and much more.

Day One

From Matthew:

Before I forget all of this I want to write it down. The last 48 hours have been a whirlwind. Wednesday evening we took our son to the hospital, to deal with what we assumed was some kind of superbug.

Tonight, our son is in the PICU at Texas Children's. Today he had brain surgery, the second neurosurgical procedure he has had in as many days. Kara and I have slept less than five hours in the last the past two days, pockets of one hour naps sprinkled through the night and the day. Things still feel unreal, like I'm dreaming and someone, sometime, is going to wake me up.

So I wanted to write down the timeline, to keep things straight.

Wednesday:
6:00 pm: Kara finishes at the peditrician's. James' sickness is "unusual" so she's sending us to Children's for observation. No one is worried.
7:00: I arrive at Children's after stopping by the House to pick up some things. I go to the room but no one is there- they'd assigned one and put it in the system before James and Kara got there, I go to admitting and of course just miss them headed in.
7:30 We meet up in the room.
8:00 James is seen by the intern. The intern notes that James appears to have a stiff neck. We are surprised, and worried he may have meningitis. The resident mentions hydrocephalus as a possibility. We're upset, but it's a long way away. A plan is made to send him for a CT scan.
8:20 We go and get the CT. We're escorted by two paramedics who basically walk after us since I'm carrying James. Kara jokes that they should be called "ambassadors" of the hospital. They say we made their day. Everyone is laughing.
8:45: James gets his IV. The IV team at children's is efficient and very nice, we're pleased, as he had a difficult time getting an IV a few days before at Medical City. James still has that IV.
9:15: The resident comes in and informs us that James has hydrocephalus. We are very concerned, ask a lot of questions. The idea of a shunt in his head forever seems daunting.
9:45 We meet with the neurological PA who talks to us about his scan. Compared to a scan he had 2 month ago, this one is not good.
10:15: The neuro PA comes back to inform us that James' scan shows a "mass" of cells, which may be nothing, and may be a tumor. We are devastated, but we pray for mere hydrocephalus. Superbugs are a welcome, even preferred cause of anything.
10:45: Per the neuro PAs instructions we move to the neurological ward.
11:15: Orientation finishes in neuro. The PA comes back to talk to us about hydrocephalus and to check James out. His heart rate stops dropping, below preferred levels. The PA orders us to be moved to ICU.
11:35: The PA talks to us about possibly putting in an EVD (external ventricular drain) as a temporary measure to take care of James' hydrocephalus, mentions we may have to of conditions worsen.

Thursday

AM

12:10: We arrive in the PICU, our new home. We meet our RN, who has been with us since and is fantastic.
12-9: We enter into a holding pattern in the PICU of uncertainty- waiting to see if James will become critical enough to justify the EVD. James is fussy, and we now know, in a lot of pain. We never know exactly when anything is happening as we're holding until the morning. We know that the results of an MRi will be critical to determining our future course. We pray. We hold James' as it's the only way he will stop crying. There's a need to get blood and he won't bleed enough. We see our friends from the IV team again who put in another IV. They wonder how on earth we went from general admission to the PICU in 4 hours.
9:00: We see our neurosurgeon and his team. The explain that the plan is to put in the EVD and then proceed with the MRI. The EVD will buy time to consider the next steps. I comment on his suit, which is a very expensive and very aggressive union of pinstripe/plaid. It looks like fun.
10:00: James gets a breathing tube and the EVD procedure begins. I want to stay to watch. it is hard to imagine leaving him, even though I know I am powerless. I am terrified something will happen while we're gone. They kick me out. I'm thankful.
11:30: We return. The EVD procedure went well and James' pressure is improving. We are thankful and wait for the MRI.
12:15: James goes to the MRI. The staff is wonderful and he seems well. He has to go under for the MRI in order to keep him still.
1:30: After a hurried (literally- we ran from the cafeteria back to the room) lunch, we receive a call that the MRI team has ordered additional pictures of James' spine. We are not encouraged, and afraid of why they need information.
3:00 James returns from the MRI.
4:00 Our neurosurgeon returns. The film he puts on the screen is entitled "8 month old with hydrocephalus and brain tumor" Kara immediately asks about the tumor. I know I asked questions but I remember very little of the next few minutes. I couldn't believe it. I remember sitting at James' bed and holding his hand, hoping we'd wake up. The plan is to treat the ydrocephalus with a ventriculostomy and get a biopsy.
5:00: Kara, who is infinitely more wise than I, institutes a no-crying, all positive attitude in James' room. It is ok to cry. But outside. James is extubated, and seems more himself. He is visibly more alert with the pressure relieved.
6:00: I lock myself in the bathroom and cry uncontrollably for ten minutes straight, curled in a ball in the corner. I wonder when we wake up. I curse god, myself, medicine.
8:00: James starts to smile and play. It is a HUGE relief to see him so happy. He is such a joyful boy, he always has been.
9:00-12: James takes a well deserved nap before remembering that he is awake, and for the first time in who knows how long, not in agonizing pain.

AM
12:00-8:00 With limited interruption, James plays. Even though we are exhausted, it is amazing to see him so happy. He's grabbing at his lines, very disruptive. We don't care. We're relieved to have our wiggeworm back. The nurse says that EVD patients don't often behave that way. As always, James is a trendsetter.
8:00: We hear that the surgery will be at 9.
9:50: Anesthesiology arrives, a sprightly grandmother who likes to share, which is nice.
10:10: The surgery is waiting on consent.
10:50: Our neurourgeon arrives to provide consent forms. We listen. They take James back and we follow as long we can. We kiss him goodbye and save our tears for when he gets rolled away.
11-2: We wait on the results of the surgery. The OR calls several times and lets us know what is going on. The surgery appears to be proceeding smoothly.
2:30: James returns to us in the PICU, tired and a bit groggy but otherwise well. His cranial pressure is much lower. Our neurosurgeon provides his report- the surgery went well, the ventriculostomy was an apparent success and they obtained a biopsy. The biopsy confirms that the tumor is not one which can be treated with merely chemo or radiation and will require a surgery to remove it over the weekend. It is a blue-cell tumor- either a raboid (sp) or a blastoma or some sort. We expected this, so much of the shock of yesterday is worn off. We try to have faith in our plan, god, and our little boy.

We are exhausted. Starbucks is a constant companion. There's one in the building. I cannot express in words how grateful we are for the loving and faithful support of everyone. I never knew how many friends we had until now. James is loved and blessed in more ways than I can imagine. Thank all of you, always.