Tuesday, March 17, 2009

Just Another Tuesday? Never.

There, I got to use my usual Tuesday title. And each and every Tuesday is always different.

I would first like to say that although we have really liked all of our nurses, this morning we started off with a girl I went to Cedarville with, so that was fun, and now we have our nurse, Amy, back today, who we really like. How fun! She has even decided she will not be taking vitals, and neither will anyone else (the nurses aid etc.) while he is resting during the day. We are sitting right here, and I know how to look at his monitors (heart, blood pressure, etc) and they know I will let them know if I see anything suspicious. He is back off his IV. No weight check yet today.

I have been trying to do everything I can for him, along with #1 of course. We do his feedings, changings, wrap his IV port, record his ins and outs, and give him his medication. I need to feel like I am doing something here and the staff seems to be happy to share the load.

This morning at 8am we went to radiology for a little vacation. Hospital vacations are when you get to leave your room for more than a short stroll to see the fishtanks. You get to do exciting things like ride the service elevator that has pictures painted on the ceiling, sit in waiting rooms with snotty nosed little kids that you are trying to keep away from your kid, wish you had brought things from your room that you forgot, meet other hospital staff, and drag an IV pole around. I'm telling you, hospital vacations are just so relaxing. On this particular vacation we got to go with Katie, a little friend Baby J has here.

His two friends are Katie and Lily. They have both been here since we have. Katie probably gets to go home today. Lily has her family visit for a couple of hours in the afternoon, but she is pretty much alone the rest of the time. She is 7 months old and the nurses LOVE her and carry her all over. She hangs out with them most of the night too, as she screams when she is left alone. We are so fortunate that I stay home and can be here 24/7 and that #1 has sick time built up so that he has only had to work one night that we've been here. We don't ask too many questions about the other patients, and really they aren't supposed to tell either. We collect bits of info though. I just can't imagine having to leave him here by himself, that would break my heart. I do feel terrible about how much we have had to cancel Draycare lately. The parents have been very understanding.

Anyway, back to radiology. Baby J was given barium (unflavored for those who have been there) to drink, but he was so starving from being back on "NBM" he didn't seem to care. We went back 4 times for x-rays...once every half hour after they had done the initial one. Or maybe it was 4 times all together. I lose track. Anyway, they got what they needed and we are back in our room. The doctor down there showed us the x-rays which are all computerized now, and she said he passed with flying colors. He has no scarring. This can mean two things.

1. He has Celiac but it hasn't permanently damaged any bowel functions

2. He doesn't have Celiac at all.

#1 is playing Madden 2004, some football game on the Playstation 2 that is in our room. Baby J is sleeping with such an angelic expression, and I am going to order some lunch...and pump...again!

Oh! I have lots of pictures from out hospital vacation today...you know, our trip to radiology. I will try to post them later.


Kim M said...

Great info - vacations are always what you make of them. I too am glad you can be there around the clock - heart wrenching when you can't.
Praise God for another good report - onward to tomorrow's biopsy report and then "how do we get his little insides healed so he can absorb nutrients?" One day at a time -
Aunt Kim

ktheath said...

Great News Jennifer...still holding on for a miracle...I completely understand letting the little guy rest...vitals are sooooo agravating - but I understand necessary. Many prayers...keep up the great reports...Love you bunches...Katie