I feel so bad that I haven't updated in so long but things have been busy.
Kate has officially been diagnosed with mucositis. The majority of BMT patients have mucositis to some degree so we are not shocked by this at all. Kate was on such an intense chemo regimen that it would be nearly impossible to avoid it.
Basically, mucositis is the inflammation and breakdown if the cells lining the GI tract. This means Kate's mouth is swollen and starting to develop lots of painful sores as are the rest of her GI organs. Currently, the underpart of Kate's tongue is completely raw and the insides of her cheeks are so swollen (which is causing her to bite them and create more sores). She also has pretty bad diarrhea and the skin on her bottom is breaking down as well.
The doctors decided to start her on a continuous morphine drip today after a really hard night last night. Kate's body is producing tons of thick mucous/ saliva as a defense mechanism to the sores. The mucous pools in her mouth/throat causing her to cough, choke, gag, and vomit. Since she isn't eating (due to the pain and some lingering nausea from chemo) her vomit is very acidic and extremely painful given the open sores in her mouth.
We've notice an improvement in her demeanor with the increased morphine dose and have the ability to push a button to send an extra bolus of meds before diaper changes and after vomiting.
Typically, mucositis is at its worst on days 8-10 post transplant and then gradually gets better. It totally relates to her white blood cell and ANC counts. The lower the number, the worse the symptoms. Kate's WBC and ANC are at zero now and it will be several days/weeks before they start to increase.
Another sad (but expected) thing is Kate's hair. She is starting to get bald spots and I would expect she loses it all by Monday. I honestly think the anticipation of it falling out will be harder than the day most of it comes out.
On a positive note, Kate is walking again! It makes me so happy to watch her walk all over the unit! I think she is trying to fill Caleb's shoes as the unit socialite since he was discharged Thursday! She's also taken a liking to being pushed around on a pink bike. Caleb was always riding a bike in the unit so I'm guessing Kate is trying to be just like him!
Hopefully I will catch up on pictures soon! I have a few cute ones from this week/weekend.
Alex and I continue to be amazed by the support our family is receiving. We are so blessed to have so many people thinking about and praying for Kate!
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