Liam (Part 3-- Operation)

Color key for the 'scoreboard'

As Liam went through surgery, waiting for the updates that came every couple hours or so soon became pretty anti-climactic. The first one was exciting—he was in good shape, the vitals are good; the OR nurse told us Dr. Baird said everything was going well. The next two updates, at about hours four and six, were the same. We were getting bummed we did not have more details, and they did not have an ETA on when they would finish.

When we had arrived that morning, the waiting room was full, bustling with kids awaiting surgery, for themselves or their siblings, and parents trying to keep the kids distracted and under control. It was tough to find a spot where we could both sit together comfortably at first—that’s how busy it was. Most of the forty or fifty seats were full, or at least there were only a few spots in the whole room where two people could sit next to each other.

One by one, the families completed their surgeries, collected their kids, and went home. And we waited. A sort of 'scoreboard' showed the status of each operation in progress. For hours and hours, we watched Liam's number remain green, waiting for it to turn yellow, indicating the surgery was ending, and the patient was in recovery. At 5 pm, the office closed, the lights were dimmed, the kids’ movies stopped playing on the big TV’s, and there were just three families still waiting. One of them, a little kid getting circumcised whose dad was pretty nice but clearly exhausted, finally finished up around 6:00 or 6:30 and wished us luck. He worked nights, and had been up all night before coming in to then wait with his son all day.

Scoreboard around 3 or 4 pm

Another hour went by, then our last waiting room-mates got to leave. This nice lady explained how her daughter was here getting her tonsils removed and some tubes taken out of her ears. Her daughter is eight years old, and has Downs syndrome. We had a nice chat as she prepared to finally go back to the Ronald McDonald house before driving home to Springfield the next morning. She estimated that she had lived at the Ronald McDonald house for about a year in total while her daughter had been in and out of the hospital for various surgeries, starting with serious difficulties at birth. She was really sweet and it was nice to see her finally get to leave with her husband, son and daughter.

This whole ordeal has taught me many things, but I think one of the greatest insights I’ve had is just how difficult chronic medical issues must be on families. The five weeks prior to surgery felt infinitely long. That routine of doctor visit, test, another visit, another test, waiting and waiting, being referred to specialist after specialist was just so taxing. The care was amazing in every instance, starting with our first visit to the primary care physician who just flew into action when he perceived we needed help. But even with that care, it has still been difficult. I can’t imagine how families who deal with these tough issues for months and years do it, and I have huge respect and increased compassion for them.



Darcie and I sat alone in the waiting room for another hour. I will admit, this was the only time of the day I felt nervous at all—and I mean at all. I finally started to get concerned with the lack of information and the amount of time this was all taking. Finally, we got our last update, at around 8 pm. The surgery had gone well, the bone flap and reconstruction of the orbit was complete, and all that remained was taking fat from Liam’s abdomen and injecting it behind his eye, to be sure it sat correctly in the newly created space, a result of carving out the bone which crowded his orbit. There had been some bleeding, but not enough to warrant giving Liam more blood, and they quickly got it under control. The nurse estimated another hour, or maybe an hour and a half and we’d be able to see Liam.

The only number for about 3 hours

We headed to the cafeteria for a quick bite of dinner, figuring we had plenty of time. We picked out some grub (Darcie got salad, I got Cheetos and we got a little mini pizza to split, and we both got Mr. Pibbs) and sat down to eat, relieved we’d get to see Liam soon, and that the surgery would soon be over. Halfway through the meal (if you can call Cheetos and pizza a ‘meal’) we got a call on my cell phone. Liam was waking up, and the doctor was ready to see us. She had finished fifteen to forty-five minutes earlier than the two estimates we had gotten. We said we’d run back, they cautioned us not to run, so we speed-walked.

Doernbecher Children’s Hospital is part of this massive complex of buildings at Oregon Health and Sciences University. There is OHSU, the Casey Eye Institute (where Liam got one of his tests), the VA Hospital, and of course the children’s hospital. They’re all connected to each other by walkways, bridges and skyways on different floors; there’s even a tram that takes you downtown… like a Swiss Alps-style tram. We got a little confused on the way back, and had to take a slight detour, but we got back pretty quickly. (Note to readers, do not ever rely on Kevin’s sense of direction for anything. Ever).

We waited only a moment before Dr. Baird met with us in a consultation room. Just going into that room, we felt the weight of this whole ordeal, and comforted each other. Dr. Baird explained that the moment they began the surgery, everything changed. First of all, right when she removed the bone flap at the side of his head, the brain was exposed. Which wasn’t good, because there should be three layers of protective membrane covering the brain. This was not meant to be a brain surgery, just a removal of a bony tumor and reconstruction of the bone, but now it was also officially brain surgery. Also, what they thought would be an aneurysmal bone cyst, or some other bloody tumor covered in bone tissue, was actually a growth of bone tissue caused by the continuous light pressure of leaking spinal fluid, due to the rupture in the membranes as mentioned above.



We were alone in the waiting room for a LONG time

The good news: this was not a tumor or growth that would come back, or would need future surgeries, or radiation treatment as we thought he’d likely need. Also, they did not have to go through his nose to relieve the pressure on the sinus (actually that would have been bad, likely causing further drainage of the spinal fluid out his nose). In fact, pseudomeningoceles (part of what Liam had) often manifest themselves this way, or by causing meningitis. They occur typically after brain surgery or a fracture of a bone in the skull that tears one or more of the membranes, causing the fluid to leak.



This also meant she had to do additional work during the surgery, ensuring the area around the brain stayed sterile, that the membrane was repaired, and there was more bone repairing that needed to be done to make sure the spinal fluid stayed around the brain. There is a fusing/sealing procedure she did to keep fluid where it’s supposed to be, but this procedure would often take a few days to fully set and be water-tight, so we’d need to do an MRI the next morning to see how the swelling was—too much pressure would make it tougher for the seal to fully settle.

The bad news: if the MRI showed too much spinal fluid pushing on the repaired area, and too much swelling in general in the area, she’d need to place a drain in his spinal column. This lumbar drain is similar to how they do epidurals—a little catheter that goes into the spine, letting fluid drain out as needed. If we needed to have the lumbar drain, Liam would need an extra couple days in the hospital to be sure everything was okay.

A new favorite hymn

It was a lot to take in, and I understood now why the nurses couldn’t give more details—they couldn’t exactly tell us the new diagnosis and procedure without raising needless concern—even panic. Even as Dr. Baird told us, face to face in a comfortable, quiet setting, Darcie and I were a little panicked—it was weird to be pretty sure of a diagnosis and course of treatment, then to hear it all got flipped around, but that things were good. We tried to think back to any time Liam, our little daredevil of a son, had any kind of trauma that could have caused this… He took a good spill mountain biking with me about four years earlier, but then he had gotten a shiner on his right cheek, with no impact near the site.

When we lived in West Jordan, Utah, the kids loved playing in ‘the pit,’ a dug out hole for a home foundation never built in the lot next door. Once Liam took a pretty good tumble and hit the back of his head on a rock, but that wouldn’t have explained the cause of the pseudomeningocele. In fact, Dr. Baird explained she had never heard of this condition manifesting itself in this way—with the pressure on the bones of the skull, pushing into the orbit and so forth. In the five or ten minutes it took Darcie and I to get back from the cafeteria, Dr. Baird had looked through the Hospital’s case literature and could see no record of this happening ever. I joked that this was a case for her scrapbook, and she said they really should publish the findings, it was a unique case. No wonder the different surgeons had not been 100% sure of what it was!

After wrapping up our conversation with Dr. Baird, we got to see Liam. He was coherent, but so tired. He looked amazing. His left eye looked just like his right one. You could barely see the sutures in his incision, and the incision was almost completely covered by his hair. We expected to see him all bandaged up, but the most alarming thing was all the wires and lines coming out of his body (IV lines, monitoring lines, chest sensors, catheter, etc.) The nurses commented on how polite he was, saying please and thank you after everything, no complaining at all.



Over 9 hours in, finally finishing!

From there, it was kind of tough, just watching him suffer headaches, violent nausea, and trying to rest. He spent the next 24 hours or so in Intensive Care, and it was really hectic. Lots of crying babies, residents doing rounds, multiple doctors consulting, checks all through the night on his progress. The poor guy just wanted to rest, and everything prevented it. Darcie stayed with him overnight, and I went home to spend a bit of time with the rest of the family and to get a little rest; I planned on doing most of the overnights after this first one.

Early the next morning Liam had another MRI, and it showed some pressure and swelling, though not as much as Dr. Baird feared it might show. However, it still warranted putting in the lumbar drain, as his eye had swollen shut and his head displayed considerable swelling (both of which were to be totally expected). They had a tough time attempting to get the lumbar drain installed—Liam was experiencing some pain in his legs, so they decided to give him more pain meds and get him rested up for the time being. They then scheduled time back in the OR, for him to get the drain procedure done with x-ray guidance and a little more pain medication than he’d had before.

Finally, around 4 pm, they got him into the OR and the procedure was completed very easily. Darcie and I took advantage of the OR time to get our meal in. Right as we got back to the waiting room, Dr. Baird came out to tell us the procedure was a success, and that we’d finally be leaving Intensive Care and going to our own room on the 10^th floor!

Once again we were struck by the care of the facility and everyone there. The night after the surgery, Liam was his nurse’s only patient, which was a real blessing, as he had several fits of nausea, and she was constantly monitoring his med intake and performance. All of the medications, being in and out of anesthesia, the trauma to the area of the surgery, and especially the issues with the cerebral spinal fluid pressure changes, and manipulating the membranes around the brain can apparently be really tough on your stomach, and it showed. Also, the act of throwing up put even more pressure on his head, which made things kind of spiral—the wrong way.

The foot of Liam's bed-- off to ICU

But he endured it all with so much quiet patience and amiability, I was truly amazed. The dropping in pressure of the CSF (cerebral spinal fluid) can cause really bad headaches, and Liam soldiered on, never complaining. In fact we often had to ask how he was, if he was in pain, if he wanted medicine, if he needed anything. He just quietly outlasted it all, with so much discipline and dignity. What an example—I will never forget it. It was just so incredibly inspiring.



Another thing that inspires me, perhaps most of all, is Darcie. I have written about my awe at the talents of the doctors, the compassion of the nurses, the gift of music and artistic expression, the wonders of technology, the faith of friends and family, and the resilience of Liam. But it all pales in comparison to the love and attention Darcie has shown as a wife and mother. She is the one who has been up and at it for 36 hours, yet she encourages me to take a nap while she keeps an eye on Liam for an hour or so before she finally goes home to rest for a night.

She is totally focused, knows all the medications, how much he’s had, and when, by names and amounts. She is right by Liam’s side the whole time; I thought I’d have to use physical force to get her to go home and sleep for a few hours. She has attention for every detail—the temperature of the room, the cleanness of his linens, how often it’s been since he drank or used the bathroom. She knows his pain ratings, and knows which medications seemed to work the best while inducing the least amount of nausea. She keeps him comfortable literally every minute of the day. She does it all without being overbearing or bossy, and is totally endearing to the nurses and doctors; she just creates such a rapport and can talk to anyone. I don’t know how she does it. It is perhaps more inspiring than watching Liam battle on. Our family is truly blessed to have her as our mom and wife!

Shortly after surgery... looking great!

As I type this, Liam is resting, finally, now a couple hours without throwing up or needing any real assistance. We have so much to be thankful for, in spite of the immense discomfort of the last couple days for Liam. He is making real progress, there is no tumor, cancerous or otherwise, and he is finally getting a little rest. Darcie has gone home to get some sleep after staying awake with him for what—36 hours? This seems like a perfect time for a break. Thank you again to all who have helped us through this so far, in so many different ways!

Click here to continue.