Monday, September 20, 2004

Monday, September 20, 2004 9:00 PM CDT

Hello - we all had a fairly crummy day! Nathan woke up at 5:00 am after wetting the bed and I couldn't get him to go back to sleep in another bed. As usual they were both cranky and fighting. I spent a good part of the day on the phone trying to get scans scheduled. I was extremely stressed out about it. Trying to get these three tests scheduled, in the proper order in the way that would cause Nathan the least amount of grief was next to impossible. It was more so because it was a three way conversation with me talking to the scheduling person at the clinic and she talking to the scheduler at the hospital. It was impossible to convey all the different scenarios that would work and not work. He ended up being scheduled for his bone marrow biopsy at 9:00 and then we were to go the the radiology center and have his MIBG scan at 10:00. There was NO way he could lie still on his back for an hour and a half after coming off of anesthesia with painful holes in his back! I was feeling guilty for needing to change it all around after the clinic's scheduler worked all morning getting it done so I decided to talk to the hospital myself and after initially thinking it was not possible we finally got a schedule that would work. I think I added a few new gray hairs and wrinkles in the process. It is so important that I be Nathan's advocate but it is also so hard. Fortunately all the people I dealt with today were understanding.

Anyway..... Thursday morning Nathan will have the bone marrow biopsy at 9:00 and at thay time they will place an IV and put him under. At 2:00 that afternoon we will go back to the hospital for his MIBG injection. Friday morning at 9:30 he will have the MIBG scan which will last 1.5 hours. He has an hour or less to eat something and then he takes his oral contrast at 12:00 and 1:00 and then has the Cat scan at 2:00. After that we will pull the IV and be done. Sometime in there I plan to collect his urine for that test. Hopefully I can do it Thursday morning if he doesn't wet his bed again (it has been 2 days in a row and 4 times in the last 10 days).

Once again today it was quite hot out and the kids had some fun playing outside with our new neighbors who are the same age as they are. That was the one fairly smooth part of the day. Dinner involved Julia throwing a fit about the meat I put on her plate (though it was really a control issue). She screamed in her room the whole dinner and then finally calmed down and ate all her meat.

The kids are happy to go to bed but are being just awful lately with coming in and out of their room for one excuse or another. EVERY night we have to yell at them after repeated request for help with toys they have dropped or other trivial things.

Have I complained enough? I guess so....we all just need a few good days so we can recuperate. I think it is not the acts themselves but the cummulative effect which is wearing away at Luke and I. We did toast to our anniversary with a glass of wine at dinner (to the lovely sound of Julia screamining). We will celebrate without kids soon, we hope.

Thanks for reading this far...sorry about the negative nature of the entry. I hope the next one is better.