Nathan started to run a fever late in the afternoon, Malia had said at his chemo earlier this week that it looked like his molars were coming in, and that since he get’s fevers when he’s teething we may wind up in the hospital. We headed to the ER at 4:30 after Nathan’s fever spiked up to 100.5.

Early on Dr. Othman told us that if for any reason Nathan got a fever over 100.4 that we were to head directly to the hospital. It didn’t matter if he was teething or not, since he has cancer they can never be sure until they check him out. So we found ourselves sitting in an ER exam room around 5:30. Things went well, I had brought my tablet and laptop for movies and Nathan was watching Mickey Mouse Clubhouse. We had put his numbing cream on his port so when he get’s accessed it won’t hurt as much. They accessed Nathan around 6p, they had gotten the needle from the ped’s (22 gauge) floor but based on how he was acting Malia and I knew he was in pain.

This had happened when they first installed Nathan’s port. The needle was too big and was pushing against the back of it. So for the next several hours we tried to make him as comfortable as possible. Every time he would move he would cry, because the needle was poking him. They checked his ears, they ordered a chest x-ray and we talked with at least two different ER doctors. We had hoped we would get to see the pediatric hospitalist but that never happened.

You can certainly tell the difference between an ER doctor who is dealing with someone who has cancer and a cancer doctor dealing with it. They are two completely different animals and it turns out you can’t really tell the ER doctor that he’s wrong, he doesn’t listen.

So, the ER doctor came back around 10p and told us that Nathan wasn’t neutropenic and that they didn’t find any infection in his body. We told him he had a fever because he was teething but he just kept going. They were going to give him some IV anti-biotics and that as soon as that was done we should be able to go home. This was good news, because about an hour earlier the same doctor said we would be spending the evening on the pediatric floor. They hung the IV at 10:15 and it went for about 30 minutes.

Once his IV was done they got us the paperwork to discharge Nathan, and the only thing left was to de-access his port. Keep in mind Nathan has been having his port accessed nearly once a week since this all started in March. Malia and I both know when he is hurting, at the cancer center they access him and he really only cries because we hold him down, the same thing goes for the de-access.

Before they de-access him they have to flush the port with Saline and Hepron, since they don’t deal with chemo kids they had to go find someone who knew how much to give him. Then when they went to push the saline the plunger wouldn’t move. Every time the nurse would push, Nathan would scream. This is when we knew something really wasn’t right, she tried to tell us that this is just how kids act and he’s angry that she’s messing with him.

The other nurse in with her said, it felt like the needle was backed up against the port. This is the second time that this has happened at the hospital. They had to pull the needle out a little bit so they could flush it out and remove it. We didn’t leave the hospital until about 11:30 and I told Malia if he gets another fever give him Tylenol and we’ll visit the cancer center on Monday, we’re NOT doing this again.

That trip to the ER was the single most painful visit we’ve ever had, Nathan was in pain for at least 5hrs and nobody would listen. If this happens again I think I’d almost rather have them give him a regular IV. Definitely going to demand that they get smaller needles, and certainly not going to let them tell us this is just how kids are, he’s been accessed 21 times and outside of the first time (hospital again) this was the worst.