On Thursday, she woke up a little flushed, but no fever so she decided to go to school since she felt fine at the time. On my way to the Make-a-Wish offices to do a little visa paperwork for our trip, I got a call from her saying she wanted me to pick her up from school because she was dizzy, throwing up and just didn't feel well. My poor baby girl!
When I got there she was having a hard time walking, very sensitive to light, dizzy, and looked so pale with dark circles under her eyes. I could not understand how her whole persona changed so fast in a matter of two hours. She told me she felt weak like the time her hemoglobin was really low.
So, I decided to get the clinic to fax a CBC order directly to the Quest lab on Burnham so we could wait for immediate results to see if we needed to go to the hospital for a tranfusion. :( I also was instructed to give her a dose of decadron. We went home because she had to throw up, but I actually got her to eat a little soup a bit after so she could take her dose with a little something in her stomach. Thank goodness she didn't throw that up.
After her labs were drawn we waited for the tests results of the CBC with her laying down in my car and I got the idea to call Dr. Milne so he could help me keep her hydrated thru treatment since she didn't really want to drink too much water because it made her nauseated and I was afraid with her still being on treatment it would just dehydrate her and land us in the hospital that night for fluids. So, after we got her test results showed that her hemoglobin and other levels were in normal range. Yipee!!! So we drove to Dr Milne's office. He gave us a bag of saline infused with a little calcium and potassium since the cbc showed she was a little borderline to give to her to help her keep hydrated and make her feel better. YES!!!
I infused the saline in between her treatments until the bag was gone which took two doses, but by late that night she already had color back, she had not thrown up since earlier that afternoon and things seem to be better. I did keep her from school on Friday so she could rest. She slept all day! I guess her body needed it.
Still to this date we are not sure if she was fighting the flu, which could be very possible since it has been going around or just tumor breakdown or tumor growth which both cause brain swelling. I guess we will know better on the next MRI.
Saturday, she finally looked & acted like our Kass again. She wanted to be naughty and have wings. So we decided to comply with her wish. She always eats pretty healthy, but sometimes we have to allow her a little cheating room. On the way to the restaurant she said she didn't feel good again. Oh man, what the heck!!!
Ryan looked at her pump and the stupid thing had not administered her dose, the bags were full. ARE YOU SERIOUS!! Another pump bites the dust, we thought. So Ryan did a couple tricks with it and got it going again. At the restaurant it only took 30 minutes and she already looked better as the dose infused cause of course she didn't want to come back home. I think she was having a little cabin fever. She even looked better after she ate so when we got home we thought we were out of the woods and the pump had just been possessed for one dose.
|Wing night accompanied with our friend Sandy|
We weren't so lucky! At her midnight dose, the pump decided to flash system error 6.3. Oh geez, here we go again, have to go ANP ghetto style. Nope, we didn't have enough tubing to do so because we had used the last one to infuse her with the IV fluids on Thursday. Ahhh how did I miss that!! So, Ryan went into McGyver mode. We still had the old pump here at the house so he took some parts from the old one and mismatched it with the current one. Halleluyah, we were doing the happy dance.!!!
He then took the first night dose shift and checked every 30 mins making sure the pump was doing it's job and I took the second shift, but I cheated I decided to sleep right next to her and that way hear for it until her dose was done. So far this morning it has only beeped once, but has worked thus far.
We do know what this means. We have had it with the refurbished pumps; three pumps in three weeks has not been fun. This week we will have to figure out how we can get briefed on the new pump whether it be by skype or if I have to go to Houston for a day.
Please keep us in your prayers that we can figure out the pump situation so Kass can stay on treatment and that her symptoms go away. She still is having a bit of trouble walking, she wall surfs, but we are happy with the improvements and that we have avoided the hospital.