Feb 10th, 2009

Still here……..but will be going home tomorrow. We would have come home today but I insisted on cycling the tpn for 12 hours instead of 18 (the usual). A bit of an altercation happened this morning between me and the gentleman doing his fellowship. He couldn’t give me a good reason why we had to do 18 hours as opposed to 12. Another doctor and I had discussed the night before doing a 12 hour cycle because that accomadates us better at home and the “fellow” was not only unaware of that discussion but disagreed with it and again couldn’t give me a good reason why. All he kept coming up w/was concern for her blood sugar which has never been a problem so the nurse decided they should check her sugar anyway and everything came back fine. So the extra day is so that they can cycle the 12 hours for me so when we go home we’ll be somewhat on track.

Once that got all squared away I took her for a walk around the hospital and outside. The access we had wasn’t the best, the courtyard was a bit cool as the sun wasn’t shining down in that spot at the time. It was still nice to take in fresh air though. We came back to the room and our roommate was leaving. She had bought a cute stuffed animal for Danielle the other day. Such a sweet girl. Her mom and I have spent hours talking. It was nice to have a considerate roommate. Then our favorite doctor here stopped in again to say Hi. We love Dr. Morrow. He tried to bring Danielle a Valentine but the place that had them had run out. It’s the thought that counts….especially because Danielle wasn’t even his patient this admission. We need to somehow get him into MLD research. I know all of our mld families would love to have him on their team.

Really looking forward to going home tomorrow. Although that’s when the real work begins. Timing is everything now. I think this whole “sterile procedure” thing is really over rated…….LOL!!!!! It can make you a nervous nelly if you let it. I”ll be stressed out for a few days but thank goodness for Diane. She pasted her IV test at Maxim and is ready to go. Between the two of us we can handle it…..LOL!!!!! Plus, the docs decided to add 3 different antibiotics last minute. One of them is given once a day but the other two are 4x a day….all through the PICC line so that’s where the timing of everything comes into play. This will be for 2 weeks then it’ll just be the tpn/lipids for the next 6 weeks.

Here’s hoping for an uneventful evening and home tomorrow afternoon!!!!!

Thanks for checking in on Danielle today!

With love,

Megan