a
May 27, 2009
Dear Family and Friends,
I somewhat regret shutting down Daniel's blog site so soon. As he has continued to make progress and also as he has experienced discouraging set backs, the blog could have continued to communicate these happenings to our friends and family. I naively thought when he came home that things would go back to normal, with a simple prescription of rest, friends, and no motorcycles, rock climbing, or swimming...at least for the summer.
I recall the second Sunday he was home, he walked into church assisted by only his cane. His arm couldn't fit through his white shirt so he put on one of his plaid ones. Of course, he hadn't shaved, and he had put on a pair of badly wrinkled pants from his laundry basket, with coordinating sandals and no socks...a sight for an OCD dad to behold. But, as you might expect, tears ran down my face as I watched him sit quietly on the bench. As people would ask how he was, I would point him out in the congregation and they would quickly run over and embrace him. All our wonderful friends who had come to the hospital, prayed for him, and had extended great kindnesses to us, were experiencing, seeing, touching, and feeling the boy they loved.
Within days of his coming home, Daniel had started walking up and down our street with Christine and his personalized sidekick, the cane. He wanted a cane that was a bit distinguished from the utilitarian ones that home health offered. I knew if I sent him to Shapirro's that he at least wouldn't come back with one that had a concealed knife or a flask. Within a few days he had tossed that to the side as well. He found mom's leather chair and ottoman more comfortable than anything else, so he abandoned his hospital bed. Alex quit sleeping in his own room and quickly grew attached to his new "adjustable" lounging cot (the hospital bed), and then one day that was gone as well.
Daniel continued to have issues with his liver. At first, the tube in his side was draining and then it subsided...usually a sign that everything was going as it should. Again, upon examination, one of the trauma team decided something didn't seem quite right, so he ordered another CT scan, which revealed yet another abscess in Daniel's liver. He continued to flush out his liver with a saline solution, three times a day, but soon it quit eliminating the fluid. Daniel insisted that the bag was malfunctioning, so they re-installed a new bag, but it still didn't work. They then discovered that the 3-way valve had a crack in it which caused it to lose its suction.
In the mean time, the insurance company called and insisted that we change hospitals, as well as doctors, because the University Hospital was out of their network. Mendy dug in her heels and said that we could not cooperate under the circumstances. She reviewed the details of his case with them and expressed that the medical care related to each of his injuries was ongoing and insisted that an interruption of the care from all of his medical teams could prove to be disastrous. Daniel's doctors have taken such an interest in his critical care and have watched over him with great expertise. We have observed the teams of doctors, nurses, and interns work together to develop great insight into how to treat the complexity of his multiple, compounded injuries. They have been remarkable and have instinctively searched for and discovered critical developments in his organs that could have otherwise been easily overlooked, had another group of doctors taken over his case. For the moment, we have qualified our concerns to the insurance company and Daniel's doctors as well are offering whatever assistance they can to persuade them to allow his care to continue with his established medical teams, without interruption.
Yesterday, at a scheduled appointment with the trauma team, they decided to make one last conservative step to drain his liver (to avoid an invasive procedure) by injecting something into his liver to break up the dead tissue and thin the infectious fluids. Apparently the dead parts of the liver actually dissolve and create fluid that must be drained from the body. Even though his tube was discovered to have been perfectly placed, the fluids and particles were just too thick to filter through. When the medication was injected into the abscess, the abscess or cyst burst and all of the infectious, sludge, puss, and fluid spilled out, into the abdomen cavity. Quickly Peritonitis set in and bad things started to happen. Then fever, nausea, and intense pain, as well as constant chills took their turns. He had been picked so many times that they couldn't find an open vein, so they decided to wait until he had been sedated and insert a central line through his jugular. We began to imagine what could have happened if Daniel had been alone at home, when the abscess burst.
They wanted to get him immediately into surgery, but there was no operatory available. The doctor had also assumed that Daniel had eaten breakfast or lunch and would be at too great of a risk if they were to begin the surgery immediately. Within a half hour an operating room became available and Daniel opened his eyes to tell us that because he hadn't felt well the day before, he had not eaten anything since midnight. They began immediately to prep him for surgery. Coincidentally (or not) Dr. Morris, who had previously performed operations on Daniel, and had continually monitored and overseen his care from the beginning, was on the last leg of a 5 day rotation. He performed the operation. He expressed that he was baffled as to why the abscess burst, after having been developed there for so long, but also expressed his gratitude that Daniel was still alive and that he was glad to be the one who would perform the surgery. He said that ordinarily he would expect the liver to be fused to the abdomen wall because of scar tissue, but that the scar tissue had softened, which allowed him to peel the liver gently from the abdomen. As he did that, the abscess was exposed enough to address the surgery with greater accuracy.
Everything fell into place as well as possible and Dr. Morris completed the expected 2+ hr. surgery within 50 minutes. Daniel said he told him that he washed everything (14) times. He inserted (4) separate drainage tubes into the liver cavity and plans to remove them one at a time, as the liver completes its healing process. Approximately 1/3 of the dead portion of Daniel's liver has already regenerated. Dr. Morris expects him to have a 1-2 week hospital stay and assured us that they would watch him like a hawk. Even though his elbow is being held together by a long metal plate and lots of screws, they expect that over time he could possibly regain up to 95% of it's capacity. His pelvis looks great. His lungs are working perfectly. His knee has healed beautifully. His kidneys are functioning well. His ribs are not hurting as badly, and his mobility is incredible.
Daniel has (3) more surgeries to go, totaling (10); however, they just discovered yesterday that the stint in his liver has begun to move into his large intestine, and if it continues moving, he won't have to have it surgically removed, thus narrowing the surgeries to only (2). The reconstructive surgery on his arm is still pending, as well as the repair of the hernia in his bowel. Apparently the impacted force of his body being projected into the car, caused his large intestine to push through it's cavity and partially wrap around his spine, which created a hernia. Compared to his other injuries, this was considered incidental and can be repaired after things have settled down a bit.
Mendy has finally admitted that she is ready to have her own little breakdown. When I arrived at the hospital, she was bright red and very unsettled. A few weeks ago, while Alex was rock climbing with Geoff, he slipped and fell about 30 ft. from the side of the mountain, but since his rope was tied in, he felt the swing was kind of exhilarating. Then, last week I discovered 17 messages on my cell phone from our family in Tennessee trying to reach us to let us know that Stephen was undergoing an emergency appendectomy. Of course, I couldn't be reached because I was out of range all day, and Mendy unknowingly had turned her phone off. Add to that, all of the hospital stays, treatments, scans, middle of the night scares, lack of sleep, and dealing with ME, she has definitely qualified for a melt down. We are all just kind of numb right now.
Christine has been amazingly stalwart and calm throughout this entire experience. What a way to begin a marriage. She just landed her first CNA job, at the Huntsman Cancer Institute and will work on the Oncology admitting floor where patients begin their chemotherapy and radiation treatments. I'm sure these months of taking care of Daniel will prove to be invaluable to her as she begins her nursing career. She has now transferred from BYU to the U of U and has applied to their nursing program.
Daniel is truly a miracle boy. Many doctors and nurses, who never expected him to survive, are now smiling with relief and comfort, having seen his great progress. I can only imagine how they must feel when they lose a patient and then in contrast, how they must feel at times like this, when after working so very hard to keep a patient alive, with God's help, they experience success. Surely nothing else can compare.
Again, our love and appreciation to everyone. We continue to be amazed at how many people genuinely care for our family. The world is so very vast and there are so many troubling situations that people face almost daily, yet in spite of it all, the human spirit proves superior and most people continue to rise above their own problems to reach out and come to the aid of those of us in need.
Love,
Aubrey and Mendy
