ER trip #3

On Sunday night about 11:30 p.m. Neil noticed Will was burning hot – I suppose one of the benefits of letting him sleep in our bed. We took his temp under arm and rectal and we were up to 102.8. Gave him some Motrin and packed up and headed for the ER.

Of course, we arrived in the ER with no temp and I felt like I had imagined the whole thing. We finally got into a room about 6 a.m. and found out that his temp was back in the morning, 100.7. He ate a great big breakfast and all his labs were coming back normal.

On Monday, around 11 a.m. his fever spiked up to 103.9. We started cold compresses and he finally crashed for a nap. We had a slew of doctors come in about an hour or two later and checked him out. He was still looking very bad so we’ve been alternating Motrin and Tylenol. Late afternoon his fever finally lowered to about 99.8.

He remained low grade and fever free all night and through Tuesday mid-morning, then the dang fever came back. Tuesday was spent up and down on fever with some highs and lows. We re-ran all his labs and everything came back normal. We also did a suppository and he had a nice big BM, in the potty “hat” – yes, they capture all his urine and BMs in a plastic cup that fits over the toilet. It looks like a cowboy hat.

The poor kids hand looks like a pin cushion. He’s been a real trooper, but Monday was not a good day, at all. We’re obviously concerned about new brain lesions around this fever, but just need to focus on getting him fever free, rested, hydrated and eating better. We are on isolation so everyone who comes in is required to wear a mask, gloves and a plastic gown. It freaks me out in the middle of the night so I can only imagine what he thinks when they come in thirsty for blood at 4 a.m.  

We were admitted on to floor 8 – I’m not a fan. Dr. Koenig moved us up to pedi NICU on 9 and we’re much happier. It’s quiet and the people know what they are doing. On 8, they just put his EPI-743 out on the counter… I had mentioned about five times that it can’t be exposed to light and needs to be kept cold.

I spent the night Sunday and Monday and Neil is on duty tonight. I have serious doubts that we’ll be released anytime soon. My hope is for Thursday or Friday so it would give us the weekend to get him back up to speed at home.  

Child Life aids brought up a little car / scooter and Will enjoyed scooting around a bit on that.

As of Tuesday night about 10:30 p.m. Will is being a bit of a rascal for Neil and not going to sleep. Hopefully that little turkey gives it up soon and they both get some rest.

Will keep you posted on progress. Hopefully we'll get some sort of diagnosis, if not, I guess it's just a weird fever.

Update: Wed. 10:15 a.m. - Will did not have a very good night's sleep, but was in a good mood Wed. morning. The doctor came by and everything is coming back negative or normal so they are stopping the antibiotics and will with the IV fluids and Motrin as needed. While he continues to have fever, the numbers are trending down, so that's a good sign. Hopefully today he will trend to low grade and maybe by Friday we'll be discharged.

Update: Wed. 4:30 p.m. - Will had a low grade fever 99 for a bit. He got a sponge bath. His IV was leaking so he got a new one put in. At a pretty good lunch. No nap and has been watching a lot of Barney today. Might have to get the young man a new Barney movie tonight on the ipad. For sanity purposes. You can only listen to Baby Bop sing "No no no no no" so many times.