Friday, September 24, 2004

Friday, September 24, 2004 7:39 PM CDT

Hello - I thought I would update sooner but it got away from me. I will try to recap...

To start with all things medical:

Thursday morning Nathan and Julia woke up at 6:30 and immediately the crying started because Nathan wasn't allowed to eat ro drink. He pretty much cried and whined until we left at 7:30. We went to the hospital and after registering and not being able to convince the gy we were not being admitted we were admitted to the PICU. Several phone calls later by the nurse practitioner and the admitted status was fixed (thank goodness because it would have been an insurance mess). They put Nathan in abed and he was quite happy. The intesevists (ICU doctors) came around and one was quite upset that Nathan's procedure was scheduled for 9:00 but then the DR who did the scheduling shoed up and all was well. After much hanging around they finally out in his IV.. The first one did not go in successfully (of course - it always takes 2 pokes). Then the second one was put in and thanks to the Child Life woman it wasn't too traumatic. I took off for a waiting area while they did the procedure and read. Nathan was mad when he woke up because he wanted to leave ASAP. They wanted to observe him a little longer and he threw a huge kicking fit. I think it paid off for him because after about 10-15 minutes of that they said he could go. He was CLEARLY fully awake from the anesthesia by then. We were still wanting to collect his urine because he woke up too early and went in the morning at home but we could not convince him to go at the hospital. We then went to a restaurant where he finally did want to go and managed to get a sample and get pee all over my shirt. We then had to hurry back to the hospital to turn in the sample in the time alloted. We had to re-register at the hospital since the oringial person admitted us and didn't belive me when I told him I would be seeing him later if he wouldn't register me for both things. So at least I got a "told you so" out of it! We went to Nuclear Medicine and got NAthan's MIBG injection and were on our way. Nathan requested a stop at Dairy Queen and so we had some ice cream and then went and got Julia.

I will backtrack real quick to say that Julia was sick all day Wednesday with a fever. It has gone now and no on else is sick *yet*. We are crossing our fingers. Of course, in some ways we sould like someone else to catch it because intermittant unexplained fevers were Nathan's first symptoms so we don't really care for those around our house. Believe it or not, Julia is almost the same age as Nathan was when he was diagnosed!

Today was a better day until the later afternoon. We went in to get his MIBG scan and he did a great job with that. Afterwards we stopped by my old workplace (non-profit day care center) and he went with the kids his age and played and had lunch with them while I talked with my friend and former boss Diane. It was a nice break in the day and good to catch up with her. Then we went to a park and he took the first of his oral contrast doses at noon. He barely complained and was very compliant about it and then played at the playground for the next hour. At one he had the rest of his oral contrast. He didn't want to take it but relented without a fight, just some playfull running away from me and smiling because he knew he had to do it. We went over to get his cat scan and while we were waiting we were told he would have to go back to the hospital tomorrow and rescan for his MIBG. At this point I started worrying some and then when they did his cat scan it seemed to me that they took a while and took an extra scan and I was peering through the glass the the tech's faces and it seemed to me they had worrysome looks. So after that I was pretty upset and Nathan had his IV taken out and we went to Target to buy him a toy as promised. I put a call into his doctor's office and had to leave a message. We got Julia and came home.

Not too much later his doctor called me back and was able to explain that they rescan soemtimes if not enough of the radioactive isotope is excreted from the body and too much is still showing in the digestive track. He said that if they were concerned about something they would have called him. He also got on the computer system and the cat scan report was already entered and it was completely clear. He told me that I had been around doctors and techinicinas enough by now that I can read them all and I would know if something was wrong. So I am feeling a lot better about it all. We are not thrilled about going in tomorrow morning because it changes our plans for the weekend a little but we are all four going to go in together and after we are done we are heading up in the mountains to Grand Lake to my brother's vacation home to visit and we will stay the night.

We went out to dinner tonight and I had a nice big margarita which has helped me calm down from such a stressful end of the day.

On a personal note I am now a member of the church choir. The director of the choir told me I had a beautiful voice and thanked my friend Tonya for bringin me in and so that was really nice to hear and I am excited about getting to sing twice a week!

So - we will be awaiting the rest of the scan results. We will hopefully have at least the MIBG on Monday. While it is reassuring that the cat scan is clear, it doesn't mean MIBG or bone marrows will be.

Please say some extra prayers this weekend for clean scans for Nathan.