Friday, June 4, 2004

Friday, June 4, 2004 7:18 PM CDT

**** just an added note that our family web page is updated for May if you want to take a look*****

Hi - well it was quite a day today....

First off - Nathan woke up a 7:00 so I was happy about that.

Nathan drank his oral contrast like a pro and we went off to the hospital at 9:00. We got to Cat scan and were told we needed to check in at the day hosptital. So we went off to do that (quite a hike) and returned. We waited for another half and hour for the scan. Nathan was very patient and played with his trucks.

During his cat scan they hook his broviak up to a machine that injects the contrast. As it was injecting we heard a very loud pop. We had to hurry up and do the scan and afterwards found that his proviak had a large split in it. It was his smallest tube and I think that machine was way too strong for it. Meanwhile before we found the crack the nurse tried to put a new cap on it and obviously was clueless about hygeine while doing so and even the proper way to put on a new cap. We got it clamped fairly quickly on my insistance. No one in the room really knew what to do and I jsut kept saying that we had to clamp it off ASAP. I finally told them to just put on any clamp and let me take him upstairs to the day hospital. Nathan was starting to get upset abot it all too. I took him upstairs and they took a look and said they would fix it after his MIBG scan. We ran back downstairs for that. As we waited Nathan was still very upset about his broviak and also about the long scan ahead of him. We had been planning to go to Times Square when we were done and so I told him if he could just lay still and do the scan he could get a new toy and that helped him calm down.

He did great in the scan. He watched Monsters Inc. He was perfectly still and did not complain. I couldn't really see the images so I don't know much about the outcome.

After the scan (around 12:45) we went back upstairs to the day hospital. We were both hungry but wanted to get the repair done. There was much waiting around and finally I had to call the surgeons in Colorado to find out the size of the broviak. After much looking - the nurse came back and told me that they had no size 9 french supplies so we could either go back home to get it fixed or take it out. Well - going home was obviously not going to happen so the surgeon's nurse came out to talk to me. She said they would remove it one Monday. The nurse had to hunt around for a clamp because Nathan had the scissor-like clamps dangling from him. She found a still pretty cumbersome clamp and put it on. We were then told a doctor would come talk to us. Finally at 4:00 we were told to come back Monday at 7:30. We asked if we needed to wait for the doctor but thankfully they said no. I don't know at what time the procedure will take place. Nathan will be off food and water due to the anesthesia. After he is done with that they will place an IV (while he is asleep) and then he will have his antibodies. The IV's can last 2-3 days. Nathan will have to get used to IVs. Also - he will have to get more finger sticks. He is not going to be happy. He knows his broviak will come out on Monday but he hasn't asked how he will get his "pain" yet. He will be upset about the IV.

So - after we FINALLY got out of there we hopped on the bus and went to Times Square. Nathan picked out a large toy garbage truck with motorized features. After that we went out to dinner and back to the apartment. After a little playing with his new truck he went right to bed. No line care of flushing...I guess we are done with that for now - for good if we are lucky.

So - that was our fun-filled day. At least it is the weekend and we are free to have some fun the next few days.

I had a message from Luke saying that Nathan got a paid slot at the school district preschool for fall. This is wonderful news.

So - I will have to try to keep the scans at the back of my mind all weekend. I hate to even imagine them. Yesterday Nathan was asking me why he got his "back bandages" I explained they were looking for cancer. He asked what would happen if they found cancer and I told him he would need more chemo. He told me he didn't want to lost his hair again. I told him some chemos don't do that, but we hoped he wouldn't have to even worry about that.

I hope you all have a good weekend !