That was a whirlwind trip. We're kind of disappointed to be back here and not know anything more than we did when we left.
I'm going to start by running through the events of the trip, then I'll add more of my personal reactions to everything at the end.
Sunday: We flew out of Sitka at 6 am, arrived in Seattle, picked up the rental car, checked into the hotel, attempted to take a nap (failed), walked to the grocery store to get food, ate dinner, and went to bed. Really all very boring stuff. We had wanted to go do something but were all too tired from the trip.
Monday: Walked to Children's Hospital, which was directly across the street from our hotel. Very convenient. That place is huge! It's also built on a hill, which makes it very confusing to get around. We had to take specific elevators to get to the right floor. Finally we found the GI department, checked in, and waited for our first appointment with Dr. Fahl.
We didn't wait long, then they called us back. I filled out paperwork while Daryl and one of the nurses took Aven to get weighed, measured, etc. Then we waited for the doctor. He and his two nurses came in and talked to us. He asked us all sorts of questions about our family, the pregnancy, and Aven and her eating patterns. Then he examined her (which was really a quick look-over) and attempted to get a stool sample, which didn't happen. I asked about the metabolic issue that our doctor in Sitka had mentioned, but Dr. Fahl said he hadn't seen anything on her paperwork they sent down that indicated that. I said it was in her urine, and they even called Sitka to confirm they had the right reports, which they did, but he said he still didn't see anything that indicated that. I wanted to tell him the specific name of what they'd found, but couldn't remember it at the time. If I had been able to, things might have been different.
He told us that from what we said and from examining her, he didn't think it was a GI problem and wanted us to see and endocrinologist. So he ran down the hall to their department and was able to get us an appointment for that afternoon. That was a huge relief, because when he was gone his nurse told us that what the endocrine department usually liked to do was prove that the child wasn't gaining weight before they saw them, which would mean admitting her to the hospital, inserting a feeding tube through her nose and teaching us how to use it, then sending us home to come back in a few weeks. So we were happy to have an appointment that afternoon!
Still Monday: After lunch and a nap, we were back at the hospital to see the endocrine doctor, Dr. Motaghedi. She asked us many of the same questions about our family history, Aven's growth and eating patterns/issues, and our health. She then showed us her weight and height charts, and how Aven's weight had dropped off first, and now her height was dropping (not that she was getting shorter, but on the chart for her age, it had dropped on the percentile curves - hopefully that makes sense). She said that the labs they did here in Sitka showed an elevated level of ___ (something I can't remember - medical people, any ideas?) which could indicate a vitamin D deficiency, which could explain her height not changing, but not her weight. Dr. Motaghedi said she wasn't sure what was causing her weight loss/poor weight gain. She sent us to the lab to get blood drawn, and said we should have the results of that by next week some time.
Don't worry, this is still Monday: We went to the lab where they had us wait until the orders came through from the doctor (then forgot to check for the orders until I went up and asked about it, keeping us there for an extra half hour). In the lab room there was a TV which kept Aven quite distracted until the first poke. I don't know how anyone gets blood out of tiny baby veins anyway, but maybe at a children's hospital I figured they would be better at it. Nope, not really. The lab tech stuck her left arm first and dug around for awhile, even managing to poke the needle back out through the skin, then gave up and moved to her right arm. She kept the needle under her skin this time but still couldn't get anything. She went to get another lab tech, who came in and tried a vein in her foot, finally getting what they needed. All this time, of course, Aven was screaming and looking at us like we'd lost our minds - why wouldn't we just pick her up? Why were we letting this happen to her? Daryl and I both felt sick to our stomachs. As soon as it was over she was happy, though. Sweet baby girl.
Oh hey Monday, you're still here: Back at the hotel that night, Daryl and I talked about everything that had happened. We both agreed that we were disappointed that we didn't get any answers yet about what was going on. We were both frustrated that neither of the doctors seemed to have any idea as to what could be causing her weight issues. I continued to be bothered by the fact that Dr. Fahl didn't mention anything about it being a metabolic issue, as our doctor in Sitka had indicated. (After we left the hospital I had called Kat, our nurse in Sitka, and asked her what they had found in her urine. She said it was reducing substances.) We decided that it wouldn't hurt to call Dr. Fahl again the next morning and ask what he thought about the reducing substances.
Tuesday: We enjoyed breakfast that morning and I called the GI clinic and left a message for Dr. Fahl's nurse. We started packing and Aven took a nap. A little while later, I still hadn't heard back, so I called again. This time I actually got the nurse on the phone. I told her how I was concerned about the reducing substances, and wanted to make sure Dr. Fahl was aware of them. She said she would check Aven's lab info that had been sent and ask the doctor, then call us back. When she called back, she said that somehow Aven's information from Sitka hadn't been entered into their computer, and since it was just the paper copy, it had been shredded after our appointment yesterday (as was their policy). She had called Sitka and they were sending it again. Meanwhile, she said, Dr. Fahl wanted her to come back before we left to get a urine sample and full-body X-ray of her bones. We packed up quickly, checked out of the hotel, made it to the hospital and had those things done, then hurried to the airport. Aven handled both much better than the blood draws the day before, but wasn't a huge fan of the X-rays. They did X-rays of her head (front and side), chest, hands, knees, and back.
We made it in plenty of time, had some lunch, and got on the plane.
I'm sure after the last couple months Aven thinks all we do is fly!
I had prepared myself for not getting many answers while we were there, so I'm not really surprised at the outcome of our trip so far. It did annoy me a little that neither of the doctors had ideas as to her weight loss. I am glad that I called back in the morning and asked about the reducing substances. It would have bothered me if I hadn't. I also think it's interesting that Dr. Fahl didn't mention having those things done yesterday, but thought they were necessary after I had called in the morning.
Now we're just waiting. Thank you so much to everyone who has been thinking about us. We really appreciate the prayers, and want to say keep them coming! We don't want anything to be wrong with Aven, of course, but if there is we want to find out so we can know what to do. We'll keep everyone informed of results as we know them.
Hey, at least this is making me keep up with my blog!
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