Sal spiked a low grade fever again the day after we discharged. He was super lethargic, no appetite and distinct color changes in his face. Luckily meds cut it quickly and happy Sal came back quickly. 

Then yesterday we had a nice morning at the nature and science museum. Then about 11:30 Sal was very ready to be home. He ate so I was hoping he was just tired. However, he continued to go downhill. He started with what seemed like a low grade fever. Again, coloring went way off, he didn’t want to engage in much. Then he would bounce back and be super talkative. So confusing.

I ran out, getting kids advil, Tylenol, and a thermometer. Sure enough he had a 100.3 fever. I gave advil. Unfortunately the fever kept climbing with the meds in him. He got to 101.3. I dosed with Tylenol. Got down to 100.4 but still significant with two meds in his system. I sent messages to ID but by now they were already closed. I decided to wait since last time with that low fever they said the med he had would be the plan even with fevers. 

Sal asked to go to sleep at 6:50, not like him lately. We did our nighttime meds hoping sleep would help. Then, with some friendly pushes, the choice was made to call the on-call nurse to get the ID doc on the phone. By this point Sal sweat through his pillow once, asked to change, sweat through the second one, and his clothes were sopping. His fever broke but now he was chilled. Docs said absolutely bring him in. 

To the Emergency Department we go. Amazingly Ronald McDonald House said not to worry about our room, we could keep whatever was needed in the room. The relief gave made me tear up. Sal started perseverating on the arm noodle otherwise known as getting an IV. And so it starts. 

We got to the very very busy ED around 9:30pm. We went right back since they were expecting us. Some trauma but survived placing the IV. A 100.4 fever.  After absolutely zero sleep and me having to ask Sal to have quiet time many times, we got up to our floor at 4:00 am. Exhaustion is an understatement. 

This morning he seemed okay with wake up. We have anxiety meds and all needed docs on board. Then we started to see the color drop from his face and discomfort ensue. Ugh poor kiddo. 

Next steps: We started a new antibiotics that hits more systemically instead of generalized. We are able to give this orally however with the necessary dosage, it only comes in liquid form, which is close to impossible. Sal is the most amazing pill swallower, but liquid is torturous. We are coming back to the drawing board for this to get pull form. We will also get an MRI tomorrow to look for pockets of infection or any other indication of the root cause. 

Bloodwork looks decent. White blood cell count was high last night but normal today. There are a few other high inflammatory markers but nothing crazy. It’s really a wait to gather more information situation. This is all part of the Sal oddity. If you’re looking for the rare situation, here is Sal!

We have friends and family really taking care of us. I’ve had vehicles dropped, clothing, pillows, and blankets, food, visitors to relieve me for a bit, phone calls, meds dropped, texts, messages, special things for sal, treats for me, and all of the positive thoughts and love. Plus everyone holding up Corbin and Alex and helping out in so many ways. Thank you! 

Having the support will help us figure out what’s going on with this little kid‘s body. Hopefully this new antibiotic will help. We will know after the MRI what else we don’t know or need to know I suppose. Or hey, maybe it will give us insight into definitive next steps. In the meantime, we will start speech and OT in the hospital. Hopefully we do not have to stay too long however it may be that we are here for a bit. I am working on being OK with an unknown timeline. Not my strongest attribute. 

Once I have any info I’ll pass it on. Hospital life it is. Team Sal.