posted on CarePages May 11, 2011

“Are you upset little friend? Have you been lying awake worrying? Well, don’t worry…I’m here. The flood waters will recede, the famine will end, the sun will shine tomorrow, and I will always be here to take care of you.” -Charlie Brown to Snoopy

I’m not much of a runner. Never have been. I am generally a pretty fit guy, and pride myself in being able to do and handle some things that others can’t. Going for a jog, or breaking a sweat for a half an hour or so is not big thing, but running for a purpose, for a time, for a prescribed distance, etc. It just ain’t my thing.

About exactly a year ago I participated in a 5k run for the boys school, Maria Montessori, along the banks of the Mississippi on Mud Island (I did it again this year too, but last year is where it started). As I made the one and a half miles north and turned for the home stretch back, I was running down stream, with the River. But I was running out of steam.

I looked over my right shoulder to see a huge log gliding downstream in the swift currents. It was allergy season. I was wheezing and it was starting to get a bit painful. Had I been running for fun I would have stopped and walked it off; but, for this event, the boys were counting on me making a showing. Brennan himself was there waiting for me. I wasn’t jogging, I was running.

On such flat ground, the finish line could be seen for the entire second half, and never seemed to get any closer. It just hung there seemingly forever. I thought, if I can just catch up and keep pace with that log, I will get there and be ok.

A year later, I still remember stumbling across the line, huffing and diving straight for my albuterol inhaler before talking to a soul. Brennan was eagerly waiting to hear how I placed with the rest of the boys. But I was whupped.

This year we had the race about a week before the flood waters rose enough to cover the entire race-course. Today it is 20 feet under water; but it is still there nonetheless, On the day of this year’s race I recall making the turn and searching for my log to motivate me on the return trip. There were plenty of them, but I was soon surprised to see that, with the river rising so quickly, there was no way I could keep pace with the flotsam darting past my pounding feet. My crutch was no longer there for me; and while I seemed to be having an easier time of it this year than last, I had no choice but to focus on the horizon in sight.

Arriving in the hospital this past Friday afternoon, Brennan’s was being admitted, once again, because he said so. Earlier in the day he told me he thought he needed to be in the hospital. Having been right on the money about this three times prior, the BMT team does not dismiss his sense of things; nonetheless, he was battling nausea sufficiently to warrant hospitalization for the simple purpose of being able to administer his daily meds IV, For close to 24 hours he had not able to keep anything down, and it seemed like a benign enough reason for him to rest up in-patient for a couple of days.

Thank God for Brennan’s sense, because that was the night that the flood waters started pouring over the banks. Simultaneously with the Mississippi near its crest, Brennan’s fevers began spilling into the danger zone . When he was admitted, he was normal. By 9pm, he was near 105, prompting immediate blood cultures and the ultimate determination that his VRE (vancomycin-resistant enterococci) had entered his blood system.

We could have been anywhere when these fevers kicked in. But we were in the hospital where it was detected immediately. We could have been on the road, or at someone’s house where the fevers may not have been detected as quickly. With VRE in the bloodstream., an hour can make make all the difference.
I have written about VRE before, and rather bluntly and cavalierly described it as something that I now prefer not to recall. Let’s just say that since the early days of all this, we have been warned of the risk of blood infection; but particularly reminded of the serious blood infections that are the most difficult to quell. VRE is at the top of that list.

Saturday was hard. He was delirious most of the day, and even with the cooling blankets his temperature never dipped lower that 101.5. Fortunately, however, the identification was made of both the type of infection, and the source being a grossly enlarged gallbladder. Administration of a relatively new antibiotic called Linezolid was prescribed and began to slowly whittle away at his fever. Among other things, this drug was which was designed for the purpose of treating blood infections. In Brennan’s case, it was the right choice.

Sunday morning his fevers dropped down into the 99.something range. The cooling blankets were removed and, although they would spike up from time to time, at least Brennan himself began to emerge form the sweaty denseness of fevers and engage people in the room. The biggest relief came when he turned on the TV for the first time in three days. He became chatty seemingly as happy as he had been in weeks.

Dr. Leung ventured into the room, making a special Sunday visit just to see Brennan. He, like mom and dad, was not happy with the news of a bug potentially derailing everything so close to the finish line; but he he seemed very pleased to see Brennan sitting up in bed and talking.

“You know he is quite lucky. This is a very serious situation, Just a few years ago these new antibiotics did not exist. It used to be that once VRE made it to the blood stream there was noting else to do,” he described to us matter-of-factly.

This brief visit occurred very late in the day. What time exactly, I cannot remember, but I remember feeling exhaustingly relieved to hear words of encouragement from the main man himself. Everything to that point had been all pins and needles.

The previous day I had been a wreck, doing every thing possible fight off the negative thoughts invading my mind. For crying out loud, we had just received the positive MRD results. I felt like I Brennan could see the goal just over the horizon; but all of the positive touchstones were leaving me.

Tara, of course, had barely made it back to Memphis until late that night. She didn’t make it to St. Jude until after lunch, given the delay in Nat’s discharge from Baptist after his night in the hospital (he is doing quite well, by the way, donning his new Memphis Grizzlies Blue cast proudly). Just having her back was a major relief for me, not to mention Brennan who had a tough time of his mother being away for most of the week.

As usual, she was strong and emotionally much more under control that I was about the whole infection thing, relying more capably on her faith in the team and belief that Brennan was not going to let this trip him up. I, on the other hand, felt like I was struggling with every ounce of my energy for that last one-half-mile to reach a finish line that was getting pulled further and further away. Until the Linezolid began to do its thing I was struggling not to fall apart.

Tara, having been gone for so long decided to stay with Brenny on Saturday and Sunday. And, with so much potential for change in Brennan’s status, the Brothers and I actually decided to spend Saturday night in Brennan’s isolation room at the Grizzly House (across the parking lot from the BMT unit), in the event that anything happened overnight. I had been caught before trying to find people to look after the Brothers late at night before as word came down that Brennan was headed to ICU. I did not want to deal with that again, so we stayed close.

At the time he was literally one fever away from being admitted to ICU. As a matter of fact when his situation was described to Dr. Dave Shook by the new Fellow on duty this past weekend, Dr. Shook’s first question, was, “is he in ICU?” The response, was: “No. Remember, we are talking about Brennan.”

Sunday’s progress was slightly improved, and gradually got better as the day wore on. The cooling blanket machine had been relegated to the corner and fevers rarely peeked above 101. That night was much easier on the nerves, focused more on the rising water outside, wondering if the Brothers were going to be allowed access to their school on Mud Island, which had been closed to resident’s only. We slept, and the water still rose.

I was relieved to find the school open and not inundated with water on Monday. The sandbags protecting Nat’s classroom, however, were truly being put to the test. The water lapped almost to the brim, and we knew that things had not yet crested. As the day wore on, the students could not help but be distracted by the activity literally on their door step, highlighted by Dianne Sawyer of ABC Nightly News and GoodMorning America. She took smitten with Christopher, talking to him in detail about what he thought about everything for twenty minutes (so I am told). It was all great excitement. I was even inspired to hit the gym for the first time in several days.

But as my workout progressed, a call from Tara revealed that Brennan’s infection was showing resistance to the Linezolid and that they were switching meds again. I could feel the water lapping at the door, inundating our finish line beyond sight. I finished my work-out but was severely upset by this news. Knowing that options for this type of infection are very limited, and often not successful, I struggled through each push up and each lunge with tearful determination not to stop.

By this time it was past midday. I showered and packed my gear for the hospital; but before I left, my meditation chair in the corner called my name. I call it this because it is the place where I often just sit and stare at the little chapel steeple next door. From autumn, to frozen winter skies to, to spring flowers and now almost to summer. It has been there for me every season now. New leaves from a maple tree have matured to the point of almost blocking my view; but the wind that day was strong, billowing the newly green limbs just enough. The skies were a perfect clear blue. It was impossible to conceive of a flooded countryside just a mile away, I don’t know exactly how long I sat there (close to an hour). But I watched my focal point appear and reappear between waves of leaves, forcing my heart to center, uncovering the belief that we will finish this race. Forget the rushing water surrounding us.

I then made the drive down Parkway to St, Jude for the umpteenth time. Recollecting the countless trips up and down this road,delivering me through shades of agony to the brightness of this boy’s bedside. Walking into his room Monday, he was sitting up in bed, laughing at a Disney movie. “Daddy, come sit with me! You have to see this!” For the rest of the day, he laughed and laughed, reciting lines he had remembered, eager to share his happiness with whoever walked in. While he has been generally bright and good since the Masters, he was showing a much more winsome spirit than in almost any time that I can recall.

Outside, the flood was cresting.

Brennan’s doctors arrived soon after me. While still describing his situation as very serious, they appeared confident that the new antibiotic, Daptomycin, was not being implemented a second choice, but as the appropriate alternative to Linezolid, having been created specifically as an anti-VRE medication that is capable to extending beyond the blood stream into the body’s tissue, cornering this bug to a point that it can be kept firmly under control, “cooling” his gallbladder and stabilizing him for surgery.

Tuesday morning’s news confirmed that the flood had indeed reached its peak. The waters are expected to maintain their current level for several days before dropping, presumably in dramatic fashion, by Friday.

In the meantime, the surgical team had been hovering about his room, gathering more and more data and conferring with our doctors to try and establish the best strategy for removal of the gallbladder. Several more tests were conducted, including a second ultrasound, to determine if the inflammation had subsided; an EKG, to determine that the bacteria had not affected his heart valves, as we were told VRE is prone to do; and finally a nuclear medicine test of the liver, gallbladder and stomach to trace the flow of fluids from one organ to the next, establishing the functionality of each and, hence the degree of urgency for removal.

The bottom line of all of these tests were positive, and ultimately in favor of removal. The inflation of the gallbladder lining has been mitigated to a substantial degree, along with a lot of the fluid surrounding it. The EKG was all good and the nuclear medicine test (which was done under anesthesia over about a two and and half hour period) showed that the gallbladder was not being affected by stones or any sort of physical obstruction but that it was simply non-functional, a bloated orb full of infection. This is good news, in that an obstruction would create a more immediate ned for removal to avoid rupture. But since it is simply a nonfunctioning, although highly swollen organ (it about the size of a cucumber, or 5 times normal), there is no urgency to remove immediately, allowing the Daptomycin to hopefully cool things down a bit even more, therefore, establishing the safest possible conditions for removal.Surgery is scheduled for sometime Friday (the Daptomycin arrived just today, Wednesday, and will be administered through surgery for 14 days).

As an intermediate goal to our full return home early this summer, I had coordinated transportation back to Augusta for me, Nat and Christopher on Thursday, in time for Christopher’s first communion rehearsal Thursday night (until the blood infection thing happened, this was a trip for the entire family). As it stands now, we will stay as long as we need to Friday until we are certain that Brennan’s surgery is successful and that this hurdle has been removed from his path to recovery. Brennan wants his brothers at his side as he is taken into surgery, and we do not intend to do anything otherwise. We are so close to the finish line, and if the Brothers can be there to cheer him past this obstacle, then that is where they need to be. If all is good, we will be home late Friday in time for the ceremony Saturday.

It feels like the waters are subsiding. The finish line may be submerged temporarily, but it is still where it has always been, waiting for us. Brennan, once again, has helped us focus through the rough spots, delivering me in particular the focal point necessary to energize my faith to the end.

And on Saturday, the last of the Simkins boys will share in the communion that binds these boys together so closely. Christopher will return Monday to his brother’s side, having received this sacrament that he has so willingly and honestly personified for the last two years of his young life. The race is wearing all of us out, but we are too close to lose it now. Arm in arm, these boys will cross that line together. They have to.

NTS

Updates
GIVING
WAYS TO HELP