Don’t Fall Now
May 13th, 2011 by Turner Simkins
“Experience: that most brutal of teachers. But you learn, my God do you learn.”
C. S. Lewis
The last thing you want to go with one last hurdle in front of you is stumble and fall. A lot of pieces had to come together this week for Brennan’s surgery to get scheduled for tomorrow. Arrival of cutting edge antibiotics; fevers under control; clear blood cultures; ultrasounds, nuclear medicine tests, etc. As of the Carepage posting last night, it appeared all of this things had been handled at that everything was in order for Friday morning surgery. BUu as things are prone to do around here, everything changed.
Last night Brenny started complaining of substantial pain in his shoulder, in addition to the aways prevalent pain in the lower right portion of his belly. His bowel movements also started increasing. From zero, in many days, to many in just a few hours. Normally this sort of thing would be appear as an “about time” occurrence. But last night, they all demonstrated the look and substance of the Graph Versus Host Disease (“GVHD”)_ poop post transplant. Without getting too graphic here, there was also some very alarming looking tissue substance, which none of us haver ever seen.
Finally, what looked like a GVHD rash started kicking in hard. What had been a few little red marks on his cheeks, which the docs initially assumed was drug reaction, he started braking out all over. Last night I applied an immune suppressant ointment to his affected ares, but as the day wore on today, things started looking worse.
Eyebrows were raising among all members of the medical team as the day wore on. The early morning consult with his surgeons seemed like your standard innocuous and run-of-the-mill pre-surgery meeting; but then Brennan started changing. His bowel movements became more frequent. The rash became worse. And the pain…
He watched a little TV, but reverting back to his mental state of this past Friday. When the nausea and fevers started kicking in, things started buzzing.
I had left the hospital for a few hours to pickup the brothers from school. We were late for a haircut appointment (which Nat/Justin Beber desperately needs) and to gather some luggage and Sunday-go-to-meeting clothes in order to make Christopher’s first communion this weekend. We missed the haircut, but got the bags and made it back to the hospital to find Brennan sleeping, Tara gone, but the infectious disease team standing outside of his door.
The general gist of their being there, besides to look at Brennan, was to inform us that all indications were encouraging them to encourage our team and, hence, the surgeons, to move things up as quickly as possible. His ANC had jumped over night. Also his C-Reactive Protean Levels were much higher, both indicators that inflammation and infection were on the move. Additionally, the ultra sound from the afternoon demonstrated that the gallbladder was thicker and surrounded by more fluid, indicating that the progress made over the last several days was losing ground. The infection was not under control. His fledgling immune system was trying to respond to the infection, but was beginning in to show signs of responding to things non-infection related (Brennan’s body, hence the GVHS symptoms).
Dr. Ashok Srinivasan, who happens to be the infectious disease specialist on the BMT team communicated that the speed of his digression was such that he and the team was becoming afraid that he could possibly be disqualified from surgery on Friday if we waiting any longer. This became somewhat of an issue with the surgery team here; who, looking a the procedure as a simple gallbladder excision, needed to be brought up to speed about the collateral consequences associated with taking care of this problem not only as the source of his infection, but the exacerbating ingredient to what could evolve into a serious case of GVHD (which by now most of the Carepage readers know can lead to permanent disabilities and a painfully gruesome demise.). For now it is a rash, and most likely reoccurring inside his gut; a level which can be managed but should not be exceeded. Dr. Leung then came by the room and took less than a minute to explain very seriously to Tara and his attendants that “this infection is not under control and needs to be handled now.”
With a few phone calls and a serious pow-wow between the various teams involved (not being a 24-Hour general pediatric hospital like MCG or CHOA, there is no 24-hour trauma or surgery unit here; therefore, recalling the surgery team from their various homes and dinner tables to some doing), things finally started rolling.
But as things got underway, and as he was able to see Brennan first hand, the chief attending surgeon, John Sandaval, could not have been more gracious and understanding. He told us that within no more than two hours they would be ready.
The surgery was hopefully to be performed laproscopically, but if necessary, through a conventional incision. Because of his infection, and the whole mess in general, Dr. Srinivasan prepared us that Brennan would be moved from surgery to ICU, and most likely intubated until such time that they had a grip on how his body was balancing the healing process and the new GVHD issue, two maladies that often work contrary to one another in terms of treatment. GVHD requires immune-suppression to keep it at bay. Infections and open wounds require a healthy immune system to get better. It is the art of BMT. Representing two sides to a pretty serious coin toss, until there is a determination as to which side is the most urgent, keeping him breathing on a ventilator was determined to be the most prudent course of action. Besides, ICU is the place to be when you need constant attention (although I must say that the BMT unit is not too much different).
At this point we were searching for any good sign we could find. One came in the form of angel, delivered to our presence from Augusta. Cindy Bachelder’s sister Ashlee Palmer happened to be in Memphis at a Morgan Keegan conference, and had even been able to spend some time with the boys and Tara over the past couple of days. Last night the boys even gave her a tour of the Target House facilities, an exercise that was to prove useful today. Tonight, Tara called her to explain about Brennan’s emergency surgery, and she was on it.
But then there was Christopher. As Brennan slept in his room and the nurses prepped him for surgery, Tara, the Brothers and I walked across the parking lot to the Grizzly House to pick up a few items. The sun was waning just behind the great Pyramid. The boys, oblivious to the situation at hand, skipped across the parking lot. The newness of summertime humidity was mild enough to deliver a relief from the cold dry hospital rooms which have once again taken over our lives.
It was then that we explained to Christopher the situation, that Brennan may be on a ventilator; and if that were the case, I would not be able to accompany him home for his first communion. Trying to explain how I would do the same for anyone in our family, be it child, wife, brother, sister or grandparent, he blew-up. And rightly so. Experiencing this significant rite of passage with a parent is a big deal to him; but even more so, I think doing it with his classmates has been a huge personal goal. for him. He saw his little dreams slipping away.
Fortunately (again on the angel front) all of his Godparents (he has 4!) are already planning on being there. Combine this with grandparents, friends, etc., we told him that he could celebrate his first communion with all of these great people and that we will celebrate the world’s first second/first communion, with Brenny and everyone together as soon as possible. Plus, we said, there will be presents in Augusta
Christopher cooled down; and as Nat and Tara delivered them to Ashlee, I made it back to Brennan’s room to surprisingly find him sitting up in bed and laughing at a game show. Just an hour before, he was writhing in pain, crying and scaring the wits out of everyone who walked into the room. “Daddy, did you hear that?” “He said that this is the only show where the contestants do not need to know anything about anything,”
he laughed as he gently moved himself to his little wheel chair.
I took this sign as a great light of encouragement with me as we then wheeled home to the OR. Tara, having already dropped the boys off, was waiting for me. The department chief, Dr. George Bikhazi, was already there. A mutual fondness between Dr. Bikhazi and Brennan has existing for a while now, and it delivered a bit more relief to the situation for Brennan to see him. Everyone was already fully donned out in the scrubs, face masks and hair nets, so seeing this kind older gentleman proved to be almost necessary as they started to wheel Brennan off to the OR, without any sedatives or without the customary holding of mommy and daddy’s hand as he drifted off to sleep.
Wheeling him away, he looked terrified and was crying out for both of us. We stopped the wheel chair. “Brenny, its ok. Its just the way we used to do it at MCG, remember? Dr. Bikhazi is with you and all of your old buddies, so be strong. Soon this thing will be out of your tummy and you will be feeling a lot better.” He said, “Ok daddy,” as he wiped his tears and sucked it up. But man was it a hard goodbye.
Tara and I broke out barely in time to get the remnants from the cafeteria buffet. For an hour or so we sat next to each other in a small pocket garden outside of the dining room. A hedge of sweet bay magnolias helped us both surrender to their sweet fragrance, sitting head to shoulder in silence as darkness overcame St. Jude. We just held hands, numb to what was happening.
Back in the waiting room, we were told that the gallbladder was out, but that the laproscopic plan had to be scrapped for the old fashioned cut-and-suture. It was so enlarged that it had grown into the wall of tissue inside. Had we gotten to this a few months back, it may have been removed that way, but regretfully they had to pursue the more traumatic means of removing the infected organ.
The good news is that they got it. And according to the three or four people who visited us in the waiting room, it was nasty. Dr. Sandaval confessed that, having seen it, he was grateful that the decision was made to expedite to the surgery. Another day could have ben disastrous.
We were told that he would remain in ICU on the vent for as long as he needs until they determine his lungs strong enough to deliver the necessary amount of oxygen for a strong healing process. A guarded breathing process in defense of the new injury may not be the best thing. When Dr. Srinivasan was asked about this, the answer was, a cautious, “I just don;t know. Hopefully by the end if the weekend, but it could be more. It all depends upon him.”
But as he left the room, the anesthesiologist, Dr. Bikhazi popped his head in. “This kid is amazing. Given his history and the severity of the surgery, I was afraid that he would have shown some more signs of pulmonary distress or some significant variances in blood pressure, but he just sailed right on through the operation. I am telling you, there is something special about this kid.”
Over-night they will look at the GVHD rash and determine if he needs systemic steroids to lessen the threats involved there. Balancing the threat of GVHD and the blood infection is now his main issue moving forward. At tis point, we have no idea how long he will be in the hospital, or how long this sets us back in terms of the ultimate finish line, but like always, he finds a way to say in the game.
Writing this Carepage in the ICU waiting room, with Tara at my side calling family members (doing our best to congratulate Ward and Julie who just gave birth to Brennan;s new 1st cousin, Edward Albert Rice #2 while being honest about what is happening in our world) we both got impatient and decided to walk into his ICU room prior to being invited by the nurses.
We walked into to see an small army of people around his bed. The new BMT Fellow caught our eye and shooed us away with his hand,. Peeking outside the door he said, “give us another ten minutes.”
In five minutes he walked into the waiting room. “Sorry to turn you away like that, but he was starting to breath on his own so we decided to extubate him. The kid is strong.”
He is going to be in a lot of pain, given the size of the incision made from the surgery. For now, I am sitting back in his old ICU room (#6… I am glad we got this one, which has good energy for us). His 0/2 levels are 100% and he is snoozing on propofol. Tomorrow morning we will see how he feels. If he is not burning up with fever or in major pain, I will accompany Christopher to his first communion. If not, Tara and I need to be here at his side. But I’ve faith in this boy. Lord knows I was scared to death two hours ago. but dam- if he does not always seem to push through the hard parts.
But we know there is more to it than him. Walking out to return Tara to Target House and return Ashlee to her hotel, TIm Shelton (husband to Brennan’s PA, Susan Shelton) was here praying for Brennan the waiting room. By himself, just sitting there, he left his family to do this for a kid he hardly knows. This is the same guy who sat in front of is room all night just before transplant #4. Brennan has affected his life, and that of his family, and he felt it appropriate.
Looking back at the day, the number of people who came through to do what was appropriate for this one kid is astounding. Tonight I hold Brennan’s hand as he sleeps, offering thanks for every hand that has helped, every prayer uttered, and every positive thought that keeps him inspired. And whether or not I make it home with Christopher this weekend, I promise that I will break bread on behalf of all who live mindfully for others, picking them up when they need it most. God Bless.
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