Tuesday was another normal day at the hospital. Averi is continuing to have sessions with OT, PT, Speech, and Massage. Feeding is going about the same with interest in purees and not so much interest in drinking. Oh, and did I mention she didn't sleep that night?
I hate that I can tell when Averi is about to get sick and no one can do anything until some 'real' symptoms show up. She rolled around in bed crying all night and her head felt really hot to me but she had no fever. PT even mentioned that she felt warm Wednesday morning but she still had no fever. She wouldn't eat anything and literally fussed all day. When she couldn't even nap for more than 15 minutes without waking herself up crying, I demanded that something be done.
The nurse finally called the doctor for some Tylenol, but only after I told her that Averi is teething. I also explained that Averi got all four molars first and never got fussy with any of them, but all she heard was teething and then went and ordered some Orajel.
It literally took an hour and a half to get the Tylenol, and by then Averi had cried herself to sleep while I rocked her. Luckily (I guess) Averi finally had a fever by then (which the nurse also attributed to teething) and I asked that a doctor come see her. She makes me way too nervous when she starts getting fevers.
Of course, by the time the resident arrived, she'd had Tylenol on board for 2 hours, had no fever, and was happy as could be (for the first time in almost 24 hours). They said she looked fine and to call them if we had any concerns...um isn't that what I did 2 hours ago? They also said she couldn't have any more Tylenol (the only thing making her happy) because they didn't want to mask any symptoms if she got worse.
As only a mother can know, she got worse. By 10:00 last night she had a fever over 101. They took cultures and started her on 2 hard core antibiotics. All I could think was, "Please don't be septic!" She was hooked up to something all night, as she needed more platelets and antibiotics. The nurse and I took turns rocking her all night long. Her fever got as high as 102.6 and her whole body was on fire. My only hope was that her arms and legs were hot as well (sepses causes the extremities to go cold as the body works to protect the vital organs).
By this morning, I realized for the first time that she could be sick without being septic...duh, I know. The doctor explained that, as bad as it may sound, the best option would be for her to have a cold. So that's what I hoped for, all day long, as she lay in her bed refusing to even sit up.
As good things always come in pairs, I also noticed a large bump on Averi's bum as I changed her diaper before she tried to go to sleep last night. She screamed when I wiped it so I showed the nurse and he said that it was a hemroid. I asked him what we could do to treat it and he replied that nothing could be done unless it was really large and needed to be surgically removed...and that her's is pretty large for someone her size. Seriously, that's what you're going to tell a mom who thinks her child might be septic?
This morning the doctor explained that chemo breaks down the body, including the intestinal walls, and can sometimes allow normal GI bacteria to enter the blood stream. This could be reason for her to become septic and they are going to keep a close watch on her cultures for a GI bacteria that can cause respiratory problems, especially now that she has the hemroid. They also switched her to an even stronger antibiotic that targets GI bacteria.
The only thing that trully cheered Averi up today was when Music Therapy showed up. She loves music so much. She still wouldn't sit up, but she danced while lying down and shook her maracas and tapped the drum while the lady sang and played her guitar. Averi even smiled for a little while. It was a miracle. It was perfect timing (something was set up yesterday because Averi won't leave a mask on and therefore can't leave the floor to go to group music time and other activities) and I can't wait for them to come again.
Tonight there is still nothing growing on her cultures and I am hoping the antibiotics start kicking in soon. I really hope it's a cold!