Xavier explained what happened best, so I will let him tell it. He wrote on January 27, 1998, at 3:00 in the afternoon:

Just wanted to let you know. My daughter is in children’s hospital in Dallas with acute myocarditis-an inflammation of the heart. It appears to be viral, and the prognosis can be good, but we will not know anything for 4 or 5 more days.

We will be up at the hospital for a while, so I won’t be current on my e-mail, but I will probably come home now and then and post updates.

We took her to the doctor’s office Monday morning at 9:30 because she had not been taking in fluids voluntarily for about 48 hours, and vomiting occasionally. She had a viral infection about three weeks ago that probably suppressed her immune response, and then contracted another virus that began to attack her heart muscle. Right now, the myocarditis seems to be principally viral in nature – as opposed to congenital, or congenital in combination with a virus. This is good. She is heavily sedated, and they have her on a ventilator. She can breathe on her own, but they are trying to let her dedicate all of her energy to fighting the infection. She has had two little transfusions (just to boost her hemocrit and hemoglobin levels by adding more red cells).

Stubborn Little Shits

We were admitted to Children’s in Dallas on January 26, 1998, Super Bowl Sunday of that year. Things quickly went south from there, though, and the doctors hooked us up to a heart-lung bypass machine so that our heart could rest and the machine could pump our blood for us. They initially estimated that it would only take about four days, but it quickly turned into a terrifying ordeal for all involved because we are stubborn little shits that kept fighting the damn sedatives. So it quickly turned into a game of hurry up and wait.

Eight quipped when he read through Xavier’s account the first time that he could make a drinking game out of it: take a shot for every time they had to chemically paralyze the body. You’d be absolutely hammered by the end of it. We got so good at fighting the sedatives that our medical team had to start putting us on some crazy dosages to even attempt to keep us down.

According to everything we were told growing up, we were on enough meds combined to knock out every single adult present for an untold number of hours. Xavier himself mentioned that a single one of our boluses (boli?) would incapacitate him for ten hours, and he was not a small man. We also had to be restrained by tiny handcuffs because we’d wake up, wiggle, get pissed off, and try to grab shit. Additionally, Xavier wrote in his account that we had to be put on methadone to ease the withdrawal symptoms from the painkillers they had us on. We were not going to die, by gods. We were cheating death every goddamned day. No day more so than February 23, 1998, a day we now “celebrate” annually as Brainhole…

All Hail The Motherfucking Brainhole

After getting off of heart-lung bypass and weaning off of most of the meds, we had a sepsis scare. Now, the scary thing about heart-lung bypass is that there’s a very high risk of stroke if things go wrong because the procedure uses a carotid artery to even work. After we were all finished with the heart-lung bypass, they had to clamp and tie off the carotid artery they used. They used the one on our right side. Shortly afterward, there was a sepsis scare.

Xavier tells the story of what happened best because he was there and documenting everything that happened, so I’m going to let him do the talking again. He wrote the following day, February 24, 1998:

“Brief synopsis of yesterday. It doesn’t look like it was sepsis. She got

better too quickly for it to have been sepsis. She responded well to the

intubation and the medicines, but the staff feels that this was an example of

how little cardiac reserve she has. In short, her heart was tested, and it

did not do very well on the test. 

We met again with Dr. Fixler, the head cardiologist on the transplant team.

He informed us that [Hera] and I have the option of increasing her status on

the transplant list. Basically, if [Hera] and I feel that a transplant is

inevitable, we can ask that they not refuse a heart that is available.

That was yesterday. 

[Hera] and I went home to get some decent sleep last night and left

instructions to call if anything happened. They called us at 3:30 a.m. to

tell us that she had taken herself off of the ventilator by pulling out the

tube. Her oxygen saturation level was fine, and she was breathing on her own.

Considering that [the cardiologist] wasn’t sure if she could

ever make it off of the ventilator, we took this as good news. 

[The cardiologist] called at 7:30 this morning to say that [birth name] has apparently had

a stroke. The movement on her left side is diminished. The theory is:

[birth name]’s heart function is such that there are areas where the blood doesn’t

move as effectively as it should. When the blood pools, it has a tendency to

clot. A clot (or a piece of a larger clot) that had formed in her heart broke

free and plugged one of the vessels leading to her brain. Considering that

the major artery to the righ side of her brain is severed and tied off, the

clot either passed through the other artery, through the Circle of Willis, and

lodged in a vessel. Either that or it passed into one of the collateral

vessels on the right. They are not yet sure what the extent of the damage to

her brain was as yet. They are performing an echocardiogram to determine if

there is another clot in her heart, and they will perform a CT scan right

after. After that I we talk to the neurologist and find out what has

happened.

Names in brackets have been changed for privacy purposes.