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5/23/2016 Latest post:
THE DIFFERENCE A DAY CAN MAKE
The Short Version: Kye got a bacterial infection in his blood. The bacteria attached to his mitral heart valve and formed a stringy growth of bacteria and scar-like tissue. Parts of the growth broke off, went to his brain, then scattered and lodged in a variety of capillaries causing a stroke. One of the places most affected was the area that controls his speech. Despite a relatively quick diagnosis and intense antibiotic treatment intended to slowly break down the bacterial glob on his valve, Kye had to have open heart surgery on 5/21 to remove the vegetation that continued to grow, was fragmenting/detaching further, was flapping like a flag in the wind with every beat of his heart, and was quickly destroying the valve causing blood to flow backwards.
The Extended Version:
T-6 - Wed, May 11: When I got home, Kye was already in bed with a fever and a headache,.. some mild chills. He told me it was a bad one. "Worst one ever?" "I don't know. I've never had a migraine, but maybe they feel like this." Temperature: 102* (*the temporal scanner reads one degree higher than an oral thermometer so his temp was actually 101; all temperatures below are recorded based on the original, temporal reading)
T-5 - Thurs, May 12: Kye stayed home from school. Headache remained; temperature: 103
T-4 - Fri, May 13: Kye stayed home from school. Headache was minimal, a little achy, chills; temperature... eventually 106. Now, before you make a final decision regarding my parenting abilities, read on. I Googled "when to bring teenager with fever to doctor" and Mayo suggested after three days of a temperature over 103. It had only been over 103 for one day. I also googled "Exorgen Temporal Thermometer." We had just bought one and this was our first time using it. Maybe we were using it incorrectly. According to google, the Exorgen one registers a temp closer to a rectal thermometer... which would mean is was at least a degree high. Though it was definitely more consistent than the ear thermometer, it still varied depending on what side of his face we swiped it... sometimes by 2 degrees or more. Next I googled "dangerous temperature," knowing full well from the stunningly scientific movie, Osmosis Jones, that 107 is near, if not, the absolute ceiling. I googled types of fevers and "diagnosed" that it must be bacterial. He hadn't and didn't have a sore throat or other related symptoms so I thought strep was unlikely. I asked about stiff neck thinking it might be meningitis. Not once. But 106 didn't sit well with me so I told him we were going to the clinic... he wasn't too thrilled about that so I told him I'd call the clinic nurse... assuming she'd tell us we needed to come in. She asked if he had taken any Tylenol. Now, if you know Kye the way some of us know Kye, you would have known what a waste of breath that question was. He HATES taking pills. Always has. She suggested giving him Tylenol, waiting to see if his fever came down, and putting a cool washcloth on his head. The Tylenol - chewable Juniors, of course - brought it down to 104.
T-3 - Sat, May 14: Kye's fever is 103-104 throughout the day. Day two of a fever over 103. One more day before I should take him in according to the Mayo website. Despite feeling unwell, he went to try on and pick up his marching band uniform then came home and went to bed. In the evening, he asked to go over to his friend's house. Uh... no.
T-2 - Sun, May 15: Temperature is 100-102. Going down. Phew. Mayo was right. The headache was mostly gone. He complained of aching joints. Lymes, maybe? No apparent tick bites.
T-1 - Mon, May 16: Temperature was 99.8. I told him to stay home one more day. But Kye LOVES school and persisted and prevailed in going. I walked out the door for work leaving him at home.... He called Grandma and Grandpa... and, even though I had already called him in on the attendance line... I okay'd them picking him up and taking him to school.
Day 1 - Tues, May 16: 4:05am. Kye came into our room (odd.) with his blanket and pillow and lay down on the couch. "Kye?" No answer. "Kye?" No answer. Bathroom light on. "Kye! Why didn't you answer me?" "Why won't you answer me?" Kye stood up. He had an odd smirk on half his face... nothing I had ever seen. I figured he must have done something he was ashamed of and didn't want to tell me. Steve was up by now. We continued to press him, make threats, and take any approach that might get him to talk. Nothing. He found a pen and paper in an attempt to write out what was going on. He wrote his name. Incorrectly. I replied, "What is this? We need to know what's wrong; you're scaring us. You wrote your name... and you didn't even spell it right." I call the clinic nurse who suggested calling 911. Thank goodness for nearby grandparents who came to take care of Kade. We didn't wait for them to arrive (Kade was still asleep) and took off for the emergency room.
So began a day of more tests than I can count. First a spinal tap/lumbar puncture (that seriously took 30 pokes before it worked), blood tests, and CT scan at Hudson. No clear results so they sent us by ambulance... just to be on the safe side... to Children's in St. Paul. I figured at most Hudson would admit him for the day. I couldn't believe we were headed to Children's; that's where other people's sick kids went. Children's is as amazing as you've heard, by the way. Lots of blood draws, an MRI, high dose antivirals (acyclovir) and antibiotics (vancomycin, gentamicin, rocephin), more tests. More specialists than we've ever seen. Of course, we've never really had to consult with anyone other than our general practitioner; Kye has always been a healthy kid. I can count on one hand how many times he's been on antibiotics. Even the tonsillectomy/adenoidectomy was elective. Certainly they would figure this out and we'd be able to go home later that day.
No conclusive results.
Day 2 - Wed, May 17: The blood culture taken in Hudson is growing bacteria. The brain MRI showed scattered lesions and swelling. The cerebral spinal fluid showed numbers of white blood cells in the normal range (phew). Though his symptoms seem to fit a diagnosis of encephalitis to a T, something still seemed off and concerning to the doctors. The search continued.
One of the doctors referred to his condition as "serious." The first of word of many to knock me off my feet.
The speech therapist arrived and Kye was able to speak several words, make word associations, filled in the blanks of her sentences, etc.. He was TALKING less than 24 hours later after being unable to utter a sound. His voice sounded like Kye, but the enunciation was a little garbled and he was often having to search for the right words. Still, he was talking and all motor function seemed to be in tact.
Day 3 - Thurs, May 18: Neck ultrasounds (of the carotid arteries to check for clots), more xrays, another MRI, an echocardiogram. This was the first day the word "stroke" had been used. Twice. Two more times I was knocked off my feet. Clearly they were just being thorough and leaving no stone unturned, right? Healthy 14 year-olds don't have strokes.
The second blood culture was positive with the same bacteria. The third had yet to grow anything. The doctors told us there were close to narrowing down the bacteria. They stopped the antivirals. Encephalitis still seemed to be the diagnosis of the day (maybe it was just my diagnosis... at one point I told one of the neurologists that I felt bad hoping for a diagnosis of encephalitis), but the focus had shifted to his heart and the stroke. We were asked over and over again by different specialists (cardiologists, cardiac surgeons, neurologists, neurosurgeons, infectious disease, pediatricians, and more) if he had had any recent dental work, open wounds, or any previous significant medical events.
Speech therapy continued. Kye was talking in short phrases and sometimes spontaneously (without prompting) throughout the day... he was even able to name the phases of Mitosis in order (this science teacher Mom's chest swelled with pride, of course.)
The results of the afternoon echocardiogram were all that was needed to make the final diagnosis: Acute Bacterial Endocarditis. In short, Kye's blood developed a bacterial infection. The particular bacteria (Streptococcus viridans sanguin), prefers living on heart valves (for those of you wondering, this is NOT the same bacteria that causes Strep Throat). They chose Kye's mitral valve. On Tuesday morning, a chunk or chunks of the bacteria (that had been cocooned to the valve by his immune system's fibrous tissue in an attempt to keep it in place and hold it down for further immune system attack... even though white blood cells rarely spend time in the heart... so it's essentially in vain) and fibrin broke off, traveled to his brain and caused a stroke. He had many small, scattered areas of lesions (areas of brain cells that had been destroyed) surrounded by swelling. Unlike a traditional stroke which tends to be caused by arterial plaque, which is fairly rigid and is most often seen in adults, or the bursting of a vessel in the brain, the more pliable bacteria/fibrin chunks sprayed through his brain, lodging in capillaries. Thankfully (?), if a regular stroke can be compared to lightning striking a tree and blasting off half the tree, a very large limb, or destroying it entirely, Kye's "tree" lost random leaves and twigs throughout. One of the areas most affected was near the speech center of his brain.
None of this made much sense to anyone. He had no heart murmur (the bacteria tend to stick to valves that are congenitally damaged) or heart history, he wasn't over 60, he hadn't had any recent dental work (the source of infection for many since this bacteria is commonly found in all of our mouths... though endocarditis can be caused by a variety of strains, even fungi) or recent injuries, and he certainly wasn't an IV drug user. Everyone was baffled as to how this could have occurred. The odds of a healthy kid with no heart murmur or history of heart defects developing a vegetation (the bacteria/fibrin thing attached to the valve) were astronomically low. The odds of it breaking off and traveling to his brain (his left kidney also may have been affected) after developing it were less than 5%.
Still, the reports and stats we were getting looked good. His temperature was decreasing, the proteins that indicate swelling were decreasing, we had a culture with no bacterial growth, the cerebral-spinal fluid was normal, they told us we caught it early (usually takes 4 weeks to diagnose, I guess), he was recovering his speech, the MRA showed no sign of weakened vessels or aneurysms in his brain... his prognosis was looking good (untreated, endocarditis is always fatal). The plan was to continue intense IV antibiotic treatment in order to slowly break down the vegetation (which I refer to as the flappy thing and Steve refers to as the frickin' flap) even though there was a possibility more could break free and cause another stroke(s). Antibiotics are the standard treatment in cases that haven't resulted in congestive heart failure or extreme valve damage. Surgery is also sometimes needed for neurological and organ complications (vegetations that embolize can shoot in any direction, though the pattern is sometimes somewhat predictable based on the valve on which they are located), but Kye was regaining his neurological function, had all of his motor function, and though we didn't yet know of the small spot in his kidney he won't likely require any intervention... hopefully ever.
Yet, the idea of being moved from St. Paul Children's, which specializes in neurology, among other things, to Minneapolis Children's, which specializes in cardiology, among other things was a difficult pill to swallow. It required a mind shift of sorts. In a sense, it seemed counter-intuitive to go anywhere other than the hospital that specialized in neurology since healing his brain seemed to be the primary focus. Both the heart and brain are important, of course, but it was becoming increasingly clear that his heart was posing a risk to his brain. Up until this point, I guess we had been hoping and assuming the antibiotics were going to make that nasty flap disappear. Though we didn't want to consider it, the possibility of heart surgery to remove the flap was clearly and strongly being considered. They put him on Keppra (another kick in the gut of sorts) to prevent any seizure activity and thus minimize the possibility of the flap breaking off. In addition, we hated to leave because the care we had received at Children's St. Paul was incredible.
Later that night, we moved to Minneapolis via ambulance (Ohmygoodness! Why don't those vehicles have suspension systems... of ANY kind!?!?). The CVCC (Cardiovascular Critical Care Unit) is a LOT different from the neurology floor in St. Paul. I don't know what we were expecting, but I guess doors (as opposed to a giant window/door), a shower in the bathroom, and a room where the vast majority of lights could be turned off were on the list. In addition, it's a noisy, busy place. Don't get me wrong, we're glad it is; these people are dedicated beyond belief. We're just sad it has to exist at all.
Day 4 - Fri, May 19: The day started as the previous with a variety of tests. The only one that really ended up mattering (another echocardiogram) produced results we didn't want - the vegetation had grown from 7x3mm to 17x5mm. Surgery to remove the flappy thing was looking to be the best of a only a couple worst case scenarios: 1) remove the flappy thing surgically through open heart surgery to remove the possibility of any more pieces coming off and causing an additional stroke(s), or 2) keep treating with antibiotics and pray the vegetation doesn't disconnect. Every sneeze was a thing of nightmares... yet no less than the prospect of surgery. Clearly, open heart surgery is a big deal. And while they do them EVERY. SINGLE. DAY. here, this was MY baby who was going to have his own heart and breathing stopped for 45 minutes so someone could cut into his heart. And I've watched too many Discovery science shows for my own good in this case. Not only is open heart surgery extremely invasive (think about what they need to get out of the way in order to reach the heart, now imagine how they might go about doing so), it's one of the hardest, if not, the hardest surgeries from which to recover.
Today was so hard. My own heart, and Steve's, shattered at the mere possibility.
Day 5 - Sat, May 21: To add another data point, Dr. Overman decided we could do one more echocardiogram. Maybe the vegetation had been mis-measured yesterday? Maybe it had shrunk? Maybe the other labs would be so amazing that we could be guaranteed the damn thing wouldn't break off (because a 17x5mm glob would lodge in a very big vessel and cause catastrophic damage) and wouldn't need surgery.
The problem with surgery, besides the obvious problems with open heart surgery, was that Kye had swelling and damage in his brain. Because of the blood thinners required to perform this type of surgery, the risk of bleeding in the brain was the real worry. Another stroke(s) caused by bleeding at the damage sites... or worse... were more than we could bear to consider. My brain swirled with horrible images and thoughts.
The data point was not at all what we had hoped and prayed for. The flappy thing hadn't grown, but it was clearly fragmenting; it looked like a deeply forked snake's tongue and had pushed the damage and mitral regurgitation to a level of "moderate" (there's only one level above this: severe, and we were headed in that direction). He came in with none. In addition, there appeared to be evidence it was detaching. I thought I might throw up when we were told this was our only option. As Dr. Overland had said the day before, "there comes a time when we make the difficult decision for you."
Surgery was scheduled for noonish. We put on a brave face and told Kye. His heart rate remained stable. Thankfully, we weren't connected to monitors. They would have told a different story than our faces and tone.
The surgery itself (starting from the moment of incision) was scheduled to last three to four hours, as was the recovery. Thankfully, we were provided regular updates. Even so, it was the slowest and somehow the fastest day I've ever experienced. Honestly, most of it is a blur.
Thankfully the surgery was a cardiac success. The vegetation was, in fact, close to detaching. Part of the valve and septum had to be taken out because of the damage from the bacteria (which burrows). Once removed, Dr. Overman was able to see that Kye was, in fact, born with a slight defect called an Isolated Mitral Valve Cleft. Amazingly... and this guy is a real-life super hero... Dr. Overman was able to take tissue from the other side of the valve to replace the tissue that had to be removed. The repair was made with Kye's own tissue and the amount of mitral regurgitation was listed as "trace."
The amount of machinery he was connected to was overwhelming and unnerving. Seeing him on a respirator and intubated was as horrible as we had imagined.
Then began the several hours long wait to see if there appeared to be any additional stroke damage. First the reflexes were checked; all positive. A little later, motor skills starting coming back. He could move his toes, give a thumbs up, open his eyes, give peace signs, nod, squeezed our hands... all upon request. He was breathing on his own. Upon getting out the breathing tube, he verbally told us and motioned that he wanted the bed put down from the elevated back position. He talked!
Day 6 - Sun, May 22: For better or worse, I don't remember much about this day, even though it was just yesterday. I remember Kye being in pain and my emotions crashing. We continued to watch for regained neurological function; it all appears to be as it was before the surgery. His voice sounds the same, but some of the enunciation will require some work (though there appears to no decline from prior to surgery). He also needs extra time at times to find the word or words he's looking for. These things, of course, are manageable. We'll deal with and work on them. I'm sure there will be (and already are) many appointments - OT, PT, Speech Therapy - to come, but his prognosis is good. Today (5/23) the senior medical director stopped by and described the beginning of his journey to total recovery like this: If you have 20 employees and only 8 of them show up for work, you've got a problem. However, if 18 of them show up, you're still going to get the job done.
Despite the damage, Kye is determined to "get the job done" and even make up for any "lost work."