Jan 1st and Our Yearly Medical Money is Gone

The next really eventful thing that happened was on Jan 1st 2003. Ellie was 6 months old. We were at Grandma G's for New Years Day. Ellie just slept and slept and slept all day long. She wouldn't wake up to eat, we even gave her a bath and she slept right through it. She also wasn't urinating or pooping at all the whole day.

Finally in the late afternoon I decided to drive her to Primary Children's Hospital because something was definitely not right. My Mom came with me.

Well they ran a bizillion tests and one Dr. mentioned Botulism. We spent hours and hours in the ER. I think this was our first ER visit. They decided to admit her to the hospital.

They kept running tests and on her 3rd night in the hospital she went into full respiratory arrest. They called "Code Blue" over the loudspeaker and you have never seen so many Dr.'s, nurses and equipment get to one place so fast. There were over 60 people there within 30 seconds. It was amazing, but very frightening.

They quickly intibated her (put a breathing tube down her throat and pumped the ambu bag to push breaths of air into her. As soon as they had her stable enough, they took her down to ICU.

They had neurosurgery come talk to us in a little conference room. They said they thought she stopped breathing because she had too much pressure on her brain from the hydrocephalus. He said they neede to drain the fluid in her head. They were going to do it right there in the ICU, not even in an operating room. I asked if I could watch and they said no.

I gave consent and they left. They let me see her and she was still intibated and was now hooked up to a ventilator. I was very scared. I think I gave her a kiss and then left her to have her first operation. The name of the procedure is an EVD (External Venticular Drain). So it is a tube that goes into the fluid in her brain(the ventricles), then drains into a bag (externally).

When they were done we got to go see her. She had the breathing tube and ventilator, a tube coming out of her head and I think she might have even had an IV in her head. (She used to be really hard to find good veins for an IV.) She looked really bad.

One of the residents or fellows or someone had saved the hair that they had to shave off. He told me he picked it up off the floor for me. He put it in a baggie labeled "biohazard". It was her first haircut. It was very touching and thoughtful for him to do that.

They said that the fluid looked clear and that was a good sign. Over the next few days they didn't see a lot of pressure or fluid draining. So they removed the EVD.

The head of the ICU department was Dr. Chris Maloney. He suggested that her body was growing bigger and that her brain just couldn't keep up any more. I could not accept this. He showed me scans of her brain. I had no idea how little brain matter she actually had.

Everyone has ventricles and fluid in their brain. Pretend like the following is a normal brain.

This is what I thought her brain was like. Enlarged ventricles, but she had a bigger head, so I just thought that all of her brain matter was there.

This is what her brain is actually like.

They still didn't seem to have any answers as to why she was not waking up, pooping or urinating. There was always a looming "botulism" diagnosis. THe only way to diagnose botulism is to obtain a poop sample, inject a mouse the poop and see if the mouse dies. Well first they couldn't get any poop for a long time. Once they got some, the mouse didn't die for a long time.

But they never came up with any other explanations, so the best explanation was airborne infant botulism. Only infants under 6 months fo age contract this. Botulism spores live everywhere on the earth in dirt. Infants contract it when they are transitioning from bottle or breastfeeding to eating from a spoon. We had just fed her one time, right before she got sick. There are only 100 cases in the US per year and 25 of those are treated at Primary Children's because of our dry dusty environment. You breathe in the Botulism spores. THey go to your intestines where they grow and mutiply. They then travel through your bloodstream throughout your whole body. They attach to every muscle and paralyze them. They do not let the nerves send electrical signals to each other. It does not leave your body, you just have to wait for your body to grow new electrical senders and receptors. So you become completely paralyzed.

Maybe it was because we were refinishing our hardwood floors. Maybe it was because they were tearing down the old McKay Dee Hospital (that we live right by). Who knows.

She did not contract Airborne Infant Botulism because she has special needs. She was just "lucky".

The results of Airborne Infant Botulism last anywhere from 10 days to 1 year. Ellie's lasted longer than that.

At about 3 weeks they told me that they needed to give her a tracheostomy (or Trach). This is a tube that goes through your throat and into your windpipe. Then you can hook the ventilator up to that. She wouldn't need to be intubated any more. I just kept hoping that she was going to get better. The other reasons they gave me for traching her was that being intubated can cause permanent damage to your vocal cords. And being trached is much more comfortable. People who are intubated have to be on sedatives to make them sleep all of the time, or they just gag. I fought it for a few days, but finally agreed. At the same time the ENT put tubes in her ears.

About 3-4 weeks later she went in for surgery again, this time for a Nissen Fundoplication (Nissen) and a Gastrostomy Tube (G-tube). I fought this one again. I still kept hoping she was just going to wake up and everything was going to be fine. But they just keep sending in Dr. after nurse after specialist after therapist to talk you into it. So finally I consented. A nissen is where they surgically tie part of your stomach around itself so that you can't reflux. Because she was paralyzed food would just come right back up, there were no muscles to hold food down. A G-tube is a tube inserted directly into the stomach and food goes right into the stomach. Up to this point she had a tube down one nostril feeding her and a tube down the other nostril draining.

Right before she left they tried talking me into a PIC line (A more permanent IV Line). I absolutely put my foot down. They had talked me into all of these other surgeries and I felt like everthing was out of my control. I wanted to be in control of one thing. So I absolutely refused.

Looking back, of course she needed all of the surgeries that she got. But at the time I felt like I had no choice in the matter and I hated that.

Ellie was in ICU until March 1 (2 full months) then South Davis Rehab for 3 weeks waiting for home health nurses to become available. (When you are on a ventilator it requires 24 hour care/surveilance).