Xander starts running a high fever, in the 103 F range. His older sister, Katrina, just recovered from a bout of roseola and an ear infection the previous week, our immediate assumption is that he has also come down with roseola. A major symptom of roseola is high fevers several days before the chickenpox-like rash appears. His fever doesn't come down with Tylenol, so I called the doctor's office and spoke to a nurse, explaining the situation and asking her if we should treat his fever the same way we did Katrina's, or bring him into the office. She tells me to treat it the same way (Tylenol every three hours, Ibuprofen every six) and if he isn't better the next day, to bring him into the office.
Xander seems better, and even smiles and coos this day. We aren't too concerned, but still expecting him to get somewhat worse with the roseola.
Xander takes a turn for the worse. His fever goes up again, even medicated. He is listless about eating and throws up what he does eat. The only thing that soothes him is the swing, so he's placed in there. When he throws up again even though he hasn't been fed, we decide it's time to go to the doctor. We call at about noon, but the nurses are out to lunch so we just schedule an appointment. The earliest one available is at 3:40 in the afternoon.
When we get to the doctor's office, he's gone beyond fussy whining and is now giving a high-pitched, pained cry whenever he's moved, is pale and pasty, and his breathing has started to be labored. When the doctor exams him, he says we're probably right, it's probably roseola, but he needs to be admitted and have a spinal tap to check for meningitis just in case. Mom cries just at the thought, but knows it's necessary. Still, we're not too worried yet, just a bit upset.
After admission, the nurse places a urine bag on him and goes through all the preliminary checking -- weight, height, head circumference, temperature, etc. His urine is pretty concentrated. Then the nurses take him off to the treatment room for an IV and the spinal tap. Mom thinks about going with them (Dad and Katrina have gone home to get clothes and things for Mom and Xander), but since they didn't say anything, she's just not sure about it. After an hour, though, she goes looking for them, and finds them just finishing up. The doctor is encouraging at first, saying although the tap was a little bloody because they hit a vein, the fluid looks clear.
An hour or two later, the doctor comes back saying that they did indeed find bacteria in the fluid. Shortly after that, the nurse comes in to move Xander to the Pediatrics Intensive Care Unit (PICU), because all cases of meningitis must be there for at least 24 hours. Mom is more worried, but none of the staff seem exceptionally concerned yet, so she's expecting some days in the hospital on antibiotics, and then home. In spite of the fact that he is listless and cries whenever he's moved, mom continues to try to nurse Xander whenever he seems interested. At about midnight, she tries to nurse him a little bit, then when he goes to sleep, heads off to the PICU sleeping room for parents herself, asking the nurse to wake her if he seems hungry.
At three in the morning, mom is woken by the nurse because he seems hungry. Mom attempts to nurse him, but his attempts are half-hearted and feeble, and he soon goes back to sleep. Mom goes back to bed herself.
At 5:40am, the nurse does her routine checks, then steps out of the room for just a few minutes. She comes back in and goes to check him again, and she notices his left pupil is completely dialated. As she watches him, he begins to have seizures. The doctor and other nurses are immediately called, but the parents are left sleeping until the seizures are under control.
At about seven in the morning, a nurse wakes mom. She is told that there's been a problem and the doctor needs to talk to her, and nearly runs all the way to the room. As she gets there, she is told that he's having trouble breathing and needs to be intubated and placed on a ventilator immediately. He's also been on Phenobartibal, Adavan, and Versed to control the seizures. The Versed also sedates him for the intubation and is there partly to prevent him from remembering some of the things that are happening to him later.
Xander is moving his arms and legs around a lot. The movements seem somewhat normal to his parents. He's taken for a CAT scan early to see if there's any swelling on the brain. The radiologist doesn't see any. Back in the PICU, the doctors decide his movements are actually continuing seizures, because the movement doesn't stop when he's held down. Dilantin is added to his drugs, and the Phenobarb is increased, and the seizures are finally under control at about 12:30pm. The neurologist looks at the CAT scan later and decides there is some swelling in the brain, although it's subtle enough that the radiologist missed it.
During the seizures and afterwards, Xander's blood pressure starts dropping lower and lower. The doctors don't want to try increasing it with more IV fluids, for fear that will increase the pressure on his brain. He's started on Dopamine to increase the pressure, but it doesn't seem to be helping much, his pressure is still dropping. The doctor starts discussing giving him a blood transfusion, because he is now too weak to make his own blood cells and they have to continually draw more blood to check blood gases and other things. By this time, the poor baby has been stuck so many times that he flinches whenever someone touches him. His blood pressure drops until it reaches the 40/20 range, and he is finally given the blood transfusion. About two-thirds of a unit of packed red cells. A central line (IV that goes through the jugular vein through the left shoulder right to the entrace to the heart) is placed so blood draws will be easier and they can better monitor his internal blood pressure. His temperature goes up to the 104 range, but the doctors actually see this as a good sign, of his body trying to fight the infection. During the afternoon, his right pupil also becomes dilated and fixed.
One of the antibiotics he's on, Vancomycin, is a strong, broad-spectrum antibiotic that is being used until the doctors know what antibiotics his particular bacteria is sensitive to. This causes a reaction of his head and face flushing down to his chest, about at the nipple line. Everything that is flushed is very dark red. The rest of his body is very pale. The tests on the bacteria show that it is Strep Pneumococcus, most likely picked up from Katrina's ear infection.
Doctors in Denver's Presbyterian/St. Luke's hospital are being consulted continuously, but at this point they wouldn't be doing anything there that's not being done at Poudre Valley Hospital in Ft. Collins, so it's decided that subjecting him to the trauma of the trip isn't necessary. The Denver doctor has the opinion that the dilation of his pupils is due to some localized swelling in that area of the brain. Sunday evening, once his blood pressure comes back up some, it's also the Denver doc's opinion that if he gets through the next twelve hours without anything else major happening, he'll be over the worst of it and hopefully start to get better.
Xander is not doing better today. He is getting less and less responsive, and he has started peeing out enormous amounts of urine that is very clear. It looks like pure water. The doctors start muttering about "diabetes incipitus". Kirk's parents and sister and brother-in-law have arrived from Wyoming. Partly because the baby is so seriously ill, and partially to help take care of Katrina while Mom and Dad spend time with the baby.
Mom is sitting in the PICU, gently stroking Xander. She is doing this a lot, because of the amount of time spent poking him and hurting him to try to save his life. She wants to help let him know that her gentle hands are still there; that she still loves him. Dr. Hanson comes in, looking very grave, and asks to speak to her. Michelle looks up with a heart fluttering in fear, knowing that with a face like that, the news can't be good. He explains that the high urine output means diabetes incipitus (the full definition of this term doesn't come clear for some time yet), which means his kidneys are not properly regulating his urine output. Since there is nothing wrong with his kidneys, this means the portion of the brain that is regulating his kidneys is not functioning properly.
He hesitates a moment, and then says, "I think it's getting to the point that...that he might even die from this."
It's too much. All the fear and anguish of watching her son being poked and prodded and tortured. The lack of sleep, with no interest in food. And she knew, she KNEW, that from the way he said that, he didn't mean "might". He meant, "He's going to die." Michelle puts her head down next to her baby and just sobs. Nothing else he has to say even matters after that.
The nurse brings Kirk into the room, where the dire news is repeated. Michelle walks around for the rest of the day half bent over, as if she was punched hard in the stomach. That's certainly how it feels.
All the out of state relatives had been called to inform them of Xander being seriously ill. Now they all have to be called back to be told he is dying. A few times, Michelle just can't get through the call and has to hand the phone to the doctor. How man times can you say, "He's dying. If you want to see him alive, come now." without breaking down?
Some hours later, rather than getting less and less responsive until he falls into a permanent coma, Xander starts to wake up some and become mroe active. After lunch, with several members of the family in the room, he does something amazing. He yawns. That's pretty difficult with a big tube in your mouth to begin with, let alone impending brain death.
Everyone blinks in surprise. They start asking each other, "He did do that, right? I'm not imagining it?" The gut feeling is this is a good thing. It's a correct feeling. Dr. Hanson comes back in, and is surprised when he is informed that the baby yawned. The neurologist comes in shortly after for a routine check, and when he is informed of the yawn, his response is, "He WHAT?" with quite a shocked look on his face.
This was our miracle.
After several hours, Xander continues to improve and get better. Finally, Dr. Hanson summons the family together and says, "I'm not AS sure he's AS likely to die now."
You know your day has really been bad when that's the GOOD news.
Dr. Hanson continues on to say that since it no longer looks like he's in imminent danger of death, it's time to transfer him to Denver to be under the care of the specialists. The Flight For Life helicopter from Denver is on it's way up to us in Fort Collins.
The flight paramedics arrive and pack up the baby. He's so wrapped up and with so much equipment on the stretcher that you can barely see that there IS a baby there. Michelle is given permission to ride down with the helicopter, since she doesn't take up a lot of space. Kirk stays behind to help coordinate various family members currently there for the trip, not to mention all the stuff Michelle is leaving behind since none of it will fit on the helicopter. Also, with seven family members currently in transit, he needs to make sure that the people who just flew into Denver and drove to Fort Collins are redirected back to Denver.
After the helicopter arrives and Xander is being admitted to the PICU at Presbyterian/St. Luke's Hospital for Infants and Children, Michelle is first taken down to get his paperwork done, then brought back so the nurse -- a very nice young man named Martin -- can type in the answers to a whole bunch of questions. He also says they encourage parents to do as much of the child's basic care as possible, so they don't feel too excluded from what's happening.
Dr. MacEntee, one of the doctors who has been giving telephone advice until the transfer, arrives and the first thing she tells Michelle is not to stare at the monitors so much as she might go blind -- in a generally good-natured tone. Michelle, not feeling very good-natured at the moment, refrains from snapping back that since those monitors are showing that her baby is still alive, staring at them until she goes blind is all she WANTS to do. At any rate, Dr. MacEntee starts doing some reaction testing. Snapping, clapping her hands, touching him in various places. His various reactions or lack thereof tell her which parts of his brain are functioning well and which are currently impaired. Encouraged by his reactions, she repeats her earlier opinion that the swelling seems to be localized, and that this is a good sign.
Family members start straggling in a few at a time, and at each arrival, Michelle keeps rattling off this litany of what all the monitor numbers mean and how he's doing. The night shift nurse comments that she feels like she's on rounds.
Because small children aren't allowed in the PICU in this hospital, it's decided that Kirk's family will take her to their home until Kirk or Michelle can be available to leave the hospital again. They decide to travel in the morning, since it is now quite late. The rest of the family makes arrangment to stay in various places, with the bulk staying in small apartment owned by the hospital for family members of patients. By this time, relief that Xander is still alive and looks to stay that way has set in, and everyone is rather giddy and silly. The security guard that drives the family over to the apartments is quite amused and happy for them.
Michelle shouts out at one point, "My baby boy is going to live!"
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