Where we left off...

I am going to pick up where I left off: we were getting transported to a larger hospital...

The ambulance ride was terrifying. They made me ride up front so I couldn't see her. It was later explained to me that they were afraid that she would die on the way and they didn't want me to be right there. They kept giving me updates from the back. We were flying down the interstate with me getting very angry with the rude drivers that ignored the ambulance, lights, sirens, etc and stayed in our way.

As soon as we arrived at the hospital they wisked her off to the Pediatric Intensive Care Unit (PICU). I had to wait in the waiting room just outside. This is where my husband found me.

After what seemed like hours but was probably less than one hour, they took me in to see her. She was wired from top to bottom. They explained that they had calls in to specialists to get a consult because they had no idea what was going on or really how to stop whatever it is. We were assigned the nicest nurse. He explained that he had actually gone to school to be a nurse practioner but loved the PICU so he still nursed there and used his advanced skills to help babies. I really think his confidence kept me going while she was there.

It was explained that her seizures were uncontrollable and they had to continue administering phenobarbitol to bring them under control. The massive amounts of pheno basically put her into a medically induced coma so they could do testing and try to figure out what was going on. I think that is the smartest thing they could have done and I credit it as one of the reasons my baby is still with me.

She was in that coma for a week. Over the course of that week she underwent so many tests. It was so hard for me to see her laying there lifeless not knowing if she would ever leave the hospital. But I oculd not even explore that possibility.

They performed MRI's, CAT scans, optical scans, EEG's, and tons of blood work. They ended up giving her a central line ot cut down on the number of needle sticks. At one point the IV line draped across her leg and her system was so sensitive that the IV line caused a third degree burn. The staff was so apologetic and promising me that cosmetic surgery would be free to fix her. I remember being flabbergasted! I wanted her to wake up and live, I could care less about her leg at that point in time or cosmetic surgery. All of the preliminary tests showed nothing conclusive. The hospital was great. They gave me my own room right down the hall from the PICU and I pumped and froze the milk in order to maintain my supply.

The explained that she had four times the safe limit of pheno in her system so we would have to wait for it to wear of to wake up (or not).

I knew everything about my baby at this point. How many heartbeats she had, how her breathing was regulated by machinery, what every beep and bleep of the equipment meant. That is why about five or six days in I noticed a change in her EEG. It wasn't looking the same. There were a lot of wierd spikes.

I was hoping it meant that she was waking up. I immediately mentioned it to her neuro, who took her right down for another MRI.

Somehow I knew, when the phone rang in my room, that it wasn't good.

The neuro asked if I was available to meet. Who was he he kidding?!? My life revolved around doctors, nurses, and shift changes.

He came right up and took me to another room down the hall. For any of you who have never been through that, it feels like the longest walk ever. They don't take you to a special room for good news.

He put her scans up on the viewer and pointed to it explaining that it was the scans of her brain. He then proceeded to show me the large white areas. Those white spots were dead brain matter. He explained that sometime since her last scan she had stroked which was another way to say that her brain was deprived of oxygen. He explained that her damage was extensive, more than 60% and it affected both sides of her brain. Oh, and he wasn't done crashing my world...the parts that were damaged basically controlled everything, sight, vision, hearing.

I asked the all important question: Will she wake up?

He did not know. Honestly, not a very good possibility and I may want to explore making arrangements in case.

But we will not give up. Because of all the other children (she was my seventh child) regardless of her outcome we needed to try to figure out what caused this.

Genetic condition, environmental, etc. Trauma had already been ruled out through all the other examinations and testing.

She was still very much unconscious. They checked her pheno levels several times a day. It would have to just wear off before we would know if she would regain consciousness.

Well, that is all I have time for today. The next stage is figuring out what caused this horrendous tragedy.