This week, Miya has been fabulous! Her neutrophils are steadily increasing and this week, they will be doing some tests which determine how she is engrafting and if these are Miya’s neutrophils or the donor’s neutrophils.
On Monday, Miya ate a little piece of a Nutragrain Bar and on Tuesday she ate more Nutragrain Bar and drank some juice. On Wednesday, she came off the background of IV morphine and was eventually disconnected all together in the evening. She ate one slice of toast with butter and jam and drank some juice.
Despite having a little appetite back, Miya is still receiving two bonus Pediasure milk feeds and an overnight Pediasure feed through her NG tube. Some people are a little confused about the difference between the NG tube and the Hickman line (which gives IV access). The NG tube is a tube that goes up her nose and into her stomach. It is used for milk feeds and giving oral medication. The Hickman line is linked directly to a vein and gives venous access to IV medications.
On Thursday, we we advised that her counts were definitely on the rise and if they continue, Miya will be taken off supportive medications at the beginning of the week (ie. anti sickness medicine). We were also told Miya is the only child on the ward NOT on / never been on TPN!! TPN, as I explained in a previous post, is Total Parenteral Nutrition and is given through the Hickman line (intravenously). It is nutritional support for children who do not tolerate milk feeds and / or who are vomiting a lot.
On Friday, Miya’s mouth seemed a bit better and her voice wasn’t as hoarse. We were also advised that if she is doing this well next week, WE MIGHT BE ABLE TO GO OUT FOR A WALK OUTSIDE!!!!!!!! Also, we will start converting IV drugs to oral medications!!!! This is a HUGE step in the recovery process.
I had mentioned on Facebook that if Miya’s neutrophil counts were above 0.2 for three consecutive days, she may be allowed out into the corridor. Miya will not be going into the corridor because of the possibility of catching viruses that may be going around the ward and because of the possibility that she may pass a bug called C Diff to other patients. (Miya was admitted with a bug called C Diff in her poop. Please see earlier posts regarding our admitting process if you don’t remember.) Fresh air will be good for Miya and it is better than walking around a hospital full of sick people.
Fingers crossed, this week coming will allow us to convert IV drugs to orals and allow us to go outside!!
I have started thinking about Christmas and have even purchased a few items for Miya!! (Thanks, Lisa, for letting us use your house as a dumping ground for this stuff!!) My mum has sent me money to get Miya a Little Tykes Kitchen and we have bought her some BSL (British Sign Language-Baby Sign) books. We also want to get her a toy Silver Cross stroller. I am SO EXCITED for Christmas this year!! I LOVE TOYS!!
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