Tuesday, May 25, 2010

Long Days

Whew, what a day! Yesterday we left the house at 5am. Unless for some strange reason Lynlee is up,usually don't know the word exists at 5am let alone being ready to walk out the door at that hour, but somehow we managed! The trip to Pittsburgh is long. It can take anywhere from 2 1/2 hours (without traffic and without stopping) to 4 hours! We always give our self 4 because we never know how traffic will be and how many times Lynlee will need to stop. She always manages to poop all over her self and outfit at least once during the trip (TMI? Maybe, but hey it's my blog! LOL)

We actually managed to get there in 3 1/2 only stopping twice. Once for a bathroom break and once to change Lynlee. (Told ya!) Our first apt was at 9:30 with the neurologist. I usually refuse to have an apt earlier than 10:30 but since he worked us in I didn't argue. He wasn't to concerned with the excess water on the brain. He said that in babies that laid in NICU that long it was normal, but he did send us for another head ultra sound to get pictures to compare that it wasn't growing, etc.

Our next appt was with Genetics at 10:30. That appt usually takes at least an hour after we see our consular, nutritionist, and then the doctor. They were of course pleased with Lynlee's levels.. They decided that we could get the ammonia tested every other week and weighed every other week since everything has been so good. This makes me happy, but nervous at the same time. I live by those levels every Monday. But at the same time I know she can't get weekly blood work her whole life and somehow I'll manage. So around Noon we finally got out of there was heading down to the lab to get blood. Since Lynlee has the port they regular lab techs can't access it, we have to get the IV team to do it. They said it would be 2 hours before they could get there? ARE YOU KIDDING ME?? Seriously? If they would get me the heparin I'm pretty sure I could do it all myself. I'm not even exaggerating on this. It's that simple and I've seen it done that many times!

Ryan and I decided we would just go get the Head Ultra Sound done while we were waiting and go from there. I really wasn't looking forward to another ultra sound though. The last one was dreadfully long and Lynlee screamed the whole time! The guy kept telling me to sing to her, and make her stop crying. Yeah, I almost slapped him for that! But this time was better. It only lasted maybe a whole 5 minutes compared to the 30 minutes before and Lynlee never cried once. This tech was good!!

To cut a very long wait short we finally got the blood drawn. After a 90 minute wait on the results (yes at Weston it takes 20, go figure) it was a 55 and we could go home. I've yet to figure out why it takes so much longer at Children's and how we always manage to get a higher number there? But a 55 isn't bad. So at 4pm we finally got on the road home.

Traffic was terrible!! We stopped once at Ryan's brothers for dinner staying a whole 45 minutes, and pulled in our driveway at 8:30 last night.. LONG DAY!

I have to say Lynlee was a jewel! She only got real fussy the last 25 minutes of the trip, and I can't blame her. I was cranky way before then! Have you ever tried to get your child to nap in a hospital? It's not easy. And when I finally did get to nap while waiting for the head ultra sound, the receptionist would not give Ryan the bracelet to put on her. So I had to carry her up. Like they were going to do the head ultra sound on me and Ryan? (See told you I got cranky!!)

So now we wait for the results of the head ultra sound. I'm hoping to hear something today. I'm staying extremely optimistic on this!

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