12:52 pm: Our day began bright and early with a room change, we are now in Room 222 on the same floor. They do this so they can deep clean the rooms. Right as we got all of our things into the new room, they came to get us to go down for Phoebe’s MRI. She was not scheduled for this today, but 2 days ago I noticed a pocket of fluid on her scalp right beneath her incision area from the brain surgery. The Neurosurgeons originally were not concerned, but last night before bed I felt her head again and the mushy pocket had turned to a firm goose-egg. Phoebe’s neurosurgeon stopped by this morning to check it out and decided that she needed a quick/un-sedated MRI to check her fluid build-up in the brain. So, off we went.
Phoebe did great in her little 3 minute MRI and actually fell asleep, but not before she danced a little jig for the MRI people and clapped her hands to the Dora music they played over the speakers. She lives up to her name meaning: “Bright, illuminated light”. Right after that we were taken over to get prepared for Phoebe’s lumbar puncture and sisternogram. They will test her spinal fluid to rule out infection as the cause of her persistent fever and she will have scans every couple of hours to follow the progress of the dye they injected during the sisternogram.
Mom and I went down to the cafeteria and had some lunch while we waited for Phoebe. I have now tried almost every single food item in this hospital. They just wheeled her back into the room and now we are headed back downstairs in a few minutes to get the excess fluid drained from her head.
After that we are supposed to have a consultation with the GI team because Phoebe’s liver enzymes are high for no reason that they can discern. I look forward to discussing pro-biotics with them and how we can get her tummy flora back in balance. I know that her GI stuff has been all out of whack since she was on the anti-parasite medicine and I’d like to correct that and see if doesn’t completely heal her tummy issues.*sigh…when it rains, it pours. We have been going since 6:30 this morning and Phoebe is pretty pooped.
9:52 pm-After the Busy Day: Amey still doesn’t have internet so she text me to update everyone tonight. It was a day of tests: The MRI didn’t show any fluid buildup in the brain..only the excess fluid on the incision site which they drained today. They want to see if it builds up again and then make a plan from there. The instant test for bacterial on the spinal fluid was negative (Praise God) but they will do a 3 day grow test to get definitive results. We still have not SEEN the GI doctor but he ordered the Doppler ultrasound on her GI tract tonight. The doctors will look at the results and discuss with us tomorrow why her liver enzymes might be high. Like the game, “where’s Waldo,” we could say that about the GI doctors. We have Neurosurgeons, Oncologists and Endocrinologists coming and going but it has taken almost a week to see a GI doc? The X-ray showed that her bowels were less backed up than a few days ago but still a problem. Her stomach is not as big as it has been so her breathing is a little easier. She still has a fever but she hasn’t been on Antibiotics for a few days indicating to the doctors that the fever is from her hypothalamus not regulating itself.
I went to see Phoebe tonight. When she saw me, she asked for my son, Robert. We played Patty Cake for a few minutes. Her face is rounder from the steroids but she was worn out. She fell asleep quickly, talking in her sleep, but as soon as she was quietly sleeping, she had to wake up because it was time to go downstairs for another test. This is the first time that I have heard her cry. Poor baby is so exhausted.
The Oncologist came by and confirmed that there was no sign of the tumor on the MRI. I asked if she would start chemo tomorrow, as planned. She said that the team would have to meet to discuss it. They want to get it going since this is an aggressive, fast growing disease but the fever is worrisome.
Please pray for Phoebe’s temperature to stay normal. Please pray for her to have no bacteria in her spinal fluid and her digestion and liver enzymes return to normal. Please pray for the fluid in her head to not build up. Please pray for wisdom for the doctors and nurses.
I thank the Lord for all of you and your prayers.
Please pray for ANSWERS today. Why does she still have fever? Does she need a shunt to drain the fluids off her brain? What is causing her elevated liver enzymes? Is there anything we can do to help her tummy flora and thus her tummy pain?
These are the current concerns and issues we need covered in prayer. We are being blessed by some incredibly generous givers who are helping to meet our financial needs during this season. Thank you for being a part of Phoebe’s care. And to all of you who are praying your hearts out, sharing Phoebe’s story in your churches and Bible study groups and with your friends and family, thank you! This is awesome to see. It’s so wonderful to read through the guest-book entries and see the ways that we are connected to you all…