ADI Day 41

[UPDATED: Fri 7pm] After going so long without a hospital stay we almost expected it to stay that way but guess what - ETU!

Nathan had a fever yesterday at the clinic but it was only about 38.7. Since they are familiar with Nathan and know that the ARAC that he is on makes his temperature bounce up and down they weren't that worried and sent us home since we had to be back at the Cancer Center on Friday anyway. Well Nathan wasn't feeling that good and he finally fell asleep on the couch for a nap at 6pm and when he woke up at 7pm he was running a high fever of 39.7C (almost 104F). We gave him Tylenol but an hour later he was still at 39.7 so we phoned Dr Mpofu and he asked us to come down to emergency for blood work. We were, and still are, concerned about taking a child with no immunity into emergency but it wasn't too bad last night. When we arrived at 9pm there weren't many people and we got sent over to pediatric emergency fairly quickly and got a privateish room there.

That, of course, is where the good vibes ended. They had to do blood work on Nathan but seemed to not really know how to go about it. First they sent in a guy to take it from Nathan's arm but we explained that he had a port and they were to do it that way. Then the nurse came with a port access needle that was for an adult, way too large for Nathan. So they phoned the ped ward and had a childs one sent down (but why wouldn't pediatric emergency have a child's one - it is PEDIATRIC). Then the emerg nurse tried to access Nathan and even though she did it relatively quickly and painlessly for Nathan, it didn't work. Then comes the attempts to re-adjust and THOSE hurt. Finally they called a nurse from the ped ward to come down to access his port. Nurse Iris came down and she was very deliberate. She felt around for quite awhile trying to get a handle on Nathan's port and that comes with discomfort and apprehension for Nathan. She finally was ready to do the access and Nathan counted .. but she didn't poke. So they had Nathan count again but she did not wait for his count and poked at 3 instead of 5 and that makes him angry/surprised/hurt. Thankfully she got it in correctly the first try. They were still having trouble drawing the blood until we had to mention that they usually push some fluid in before they can withdraw and that did the trick. So 2+ hours later they finally had some blood to send down. They said 10 mins to get the results but of course it was closer to an hour. When they finally came back, Nathan's Neutrophil counts were extremely low at 0.06. They then ordered a bed for him in peds and our night was about to become longer.

It took a little bit to get a bed ready for Nathan and we got upstairs to the ped ward around 12:30am. We had to then tell the whole story to a doctor (intern) there and that took over a half hour. After he left, the nurse came in and we had to tell her most of the same information (for the fourth time that night - admitting, emerg doctor, ward intern, ward nurse). By then it was 2:30 am and both Shelley and I were pretty tired. Thankfully Nathan fell asleep shortly before midnight in the emergency room but that did mean I had to carry a pretty big boy through the hospital (or wait an hour for an orderly).

Shelley stayed overnight and Nathan's fever had broke at about 2am but was back by 5am - darn! I got back to the hospital by 9:30am and both Shelley and Nathan were still sleeping. Today was a long day of not knowing anything. Right from last night at midnight they kept telling us that Dr Mpofu would be in to see us but he did not show up until almost 2pm. The story for the stay is that Nathan will have to fever free for 24 hours and his Neutrophils have to be at least .5 (they are .03 right now) before we will be released so we really have no idea when it might be other than at least 24 hours from now.

Nathan had a not very pleasant late afternoon. He napped for a couple of hours but woke up coughing and ended up vomiting. His fever had also returned at 39.2. They brought him Ondensetron at 5pm and Tylenol at 5:15 but he threw that all up about 5:16. It wasn't very long but it was too long for them to give him another dose of Ondensetron - but they did try different Tylenol that we took a little more slowly. Nathan kept that down and it seemed to do the trick as he is feeling a little better now. He is still not eating or drinking very much but at least now he is trying a lot of different things. One bite of fries, one bite fish, one bite of crackers, one bite of carrot, one bite of crispers - just nothing is really seeming tasty to him.

Nathan had a steady stream of people through his room today. Doctors, nurses, Cancer center nurses, volunteers, playroom coordinator, both hospital school teachers and on and on. I am surprised he was able to sleep through some of it this afternoon.

Hospital staff were not the only visitors. Nathan's cousin Michelle came to visit late this morning and stayed for a couple of hours which Nathan enjoyed. Then Shelley went and got Carter and Justin and brought them back after Carter's music. Nathan and Carter were both pretty excited that Nathan got to bring the Wii into his room since he can't go out to the playroom.

And on that note, people piss me off! All of the DVD players that had been in the rooms were stolen. The original Wii system had its controllers stolen. Two of the three new Wii systems don't work from abuse. Why do idiots out there have to do that? Nathan's favourite hospital game, Spongebob Spoons has 1/3 of the cards missing and the Uno deck is half gone. I just don't understand why people treat things for sick kids like this.

To finish up this long post, we are in the hospital for a few days at least. Right now we do not have any time line of when he might be released, and so it becomes a day by day thing again. All this with only three weeks left in his last major phase. The other decision that was made today was that Nathan will continue to get treatments while in the hospital. They had originally told us that they would probably halt his chemo but decided in the end to go ahead.

Shelley will be staying tonight again and I will take the other two boys home. Carter has hockey practice first thing in the morning which Justin will come to and then we will head back to the hospital. Thank you to everyone for your support and offers of assistance - we truly do appreciate it.