The end of April, 2008; "Becoming an External Organ"

[Allison Porter]

When Lyra was first admitted into the Pediatric Intensive Care Unit at Oakland Children's Hospital two and a half years ago, we were clueless as to what was happening. She had been airlifted from Memorial Hospital in Santa Rosa, California, where a team of twelve emergency room staff members spent two and a half hours stabilizing her condition. She had slipped into a coma immediately after admission into Memorial.

Lyra, Ron and I had spent the day before this in a different hospital emergency room, and a very different scene. Lyra was exhibiting classic signs of kussmal breathing, however the medical staff did not recognize it as such. We stayed four hours, were given several doses of albuterol breathing treatments, then we were sent home with a nebulizer.

When we were discharged on that day, I knew the breathing treatments were not helping, but I had no idea how to insist that they try something else, or what to insist they try. As we were walking out, a well meaning nurse looked at me and said, "I think she's looking better." I did not agree, and had a definite sinking feeling in my gut.

We were up all night, Lyra with labored breathing, and our fear palpable. Leading up to this moment, I had taken Lyra to our doctor twice with diabetes related symptoms; diaper rash that was not going away, and soars in Lyra's mouth. Each visit yielded some treatment that did not affect Lyra's condition.

What the doctors failed to do (three times) is look at Lyra as a whole. They were looking at her as 'parts'. They did not assemble all of the different important facts and puzzle pieces to come to the hypothesis that could be proven or disproven so very simply.... a simple quick and easy blood test. I'm not sure why it wasn't considered. I do wish I had thought to ask for one.

Not that an earlier diagnosis would make life managing someone with type 1 any easier. Every day is filled with rigorous blood checks and carbohydrate counting. It may not sound like much, but throw in a three year old dancing princess and a six and three quarters (I was corrected today) year old wall climbing singer, and you have a recipe for exhaustion.

Where it does matter is in the long term affects on her organs. Her body had been slowly shutting down for three weeks. Her organs may have taken a toll. In fact, when we arrived at Oakland Children's about an hour after she did, we were not allowed to see her for some time, and were told that she had a 50% chance that all of her organs would function.

That was just another terrifying moment.

When we finally got to see my baby's sweet little body, she was hooked up to IVs (several in every appendage), breathing tube, eyes taped shut, tubes in her nose. High pitch beeps, low pitch beeps, fluorescent lights, blinking lights. And sweet, beautiful little Lyra.

As soon as I had permission, I climbed into bed with her and softly sang into her ear. And I talked to her. I wanted to make sure she knew we were there, and loved her so very much. She did not gain consciousness for several days.

That was our entry into the world of functioning as an Islet of Langerhans (endocrine cell of the pancreas). It was actually a relief to find out she had type 1, and that she would have fully functioning organs after all this.

I am only just now starting to understand the delicate manner with which the staff at Oakland Children's had to use to bring Lyra's pH back to normal.

Around Lyra's first birthday we went back for her first follow up appointment and brought her doctor and nurses birthday cake. Our next appointment will be back in Oakland, two and a half years later.