Apparently, Scarlett was not ready to be home. She missed her nurses and hospital friends, so she made sure we were back before too long.
Yesterday, Scarlett woke up early while Chris was getting ready for work - about 3:15 am. She gagged and sputtered a little, so I gave her a dose of anti-nausea medication, then changed her diaper to settle her back to sleep. As soon as I picked her up, I noticed she was burning up. We took her temperature a few times, and as soon as I saw 102 I called the on-call oncology doctor. The rules are clear: a temperature that high requires emergency room ASAP.
Chris had to go to work. I packed Scarlett up, threw on some shoes and headed for our local ER. We had been there once before, the day the tumor was discovered. I was not thrilled to be there under any circumstance, but even more concerned that they would not know how to handle Scarlett's specific medical issues. I was right.
We arrived at 4am. They found no fever, but wanted to do blood cultures anyway. I was hesitant, since Scarlett was supposed to have blood work and chemo again later that day; I didn't want to expose her to infection or hurt her more than necessary. Unfortunately, another call to the on-call oncologist made the choice easy - she said do the cultures. The nurse accessed Scarlett's port and drew the blood.
Fevers indicate infection of some kind. With her immune system compromised by the chemo, Scarlett is very susceptible to infection and even a run-of-the-mill illness can be life-threatening to her. Her port, while under the skin and only accessed in sterile conditions, is a likely source for infection, so any fever means that a sample of blood is drawn to see if her port is infected, and another is drawn from her arm to see if any other infection is present.
The arm sticks were really hard because her tiny veins are hard to find, and don't give much blood. The phlebotamist had to poke both arms and still barely got what she needed. Now both arms are bruised from the elbow to shoulder.
After a few hours, with no fever and blood cultures likely going to take all day, I was ready to take her home and take a shower before she would see her regular team at Stanford. That's when things got crazy. The ER traffic started to pick up once the sun was up - car accidents in morning traffic, a guy who took too much 5 Hour Energy and a guy screaming and jumping around in pain needed the nursing attention. None of the ER nurses knew how to de-access the port (the one who accessed her had left by then). They didn't know what medication to use to lock it off, what procedures to follow, and it began to make me nervous. When they handed me a 22-page print out of "How to Treat Patients with Venous Catheters", I called the oncology advice nurse, and she basically said to get the baby and go, leave her accessed and bring her straight to her regular nurses so we didn't risk excess bleeding or infection.
We did just that. I signed off that I was taking her with the port accessed and we drove across the bay. It was about 10:30 am when we were brought into the outpatient clinic for monitoring. Her fever was back, she had chills and there was a little blood in her diaper. Her blood work showed that she had very low blood counts and needed a blood transfusion. Low platelets make her bleed and bruise easily, and can cause bleeding in her intestinal tract. They redid all her blood cultures (including the ouchie arm draw- which again took both arms!) With her fever high and the other factors at play, she was admitted for at least 48 hours to figure out what is going on.
Overnight, her fever hit over 103. Tylenol brought it down, and it seems it has cleared. She does not want to eat, so we are feeding her through the NG tube. She is not feeling well; it is obvious just by looking at her. As much as it stinks to be in the hospital yet again, I am glad we got here before it got any worse. She hasn't been anywhere or with anyone other than family, so I don't know what has made her sick. It will be a while before the blood cultures come back with any results. It is scary to think how quickly and severely she can go down hill.
Hopefully more good news soon...