September 3, 2011

Day +3: Mucositis Sets In

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!

- Posted using BlogPress from my iPad

24 comments:

Ali said...

I'm sorry Kate is so uncomfortable! I hope she is feeling better soon. I shared Kate's story with my 2.5 year old (very simplified, of course) and she has been praying for Baby Kate and asking about her. She on Thursday she prayed that Baby Kate would be able to walk and eat treats soon. She may be Kate's littlest cheerleader!

Stefanie Blakely said...

Oh mama, I can't imagine how difficult all of this is, but it must be a relief that Kate's doctors have assured you that this is all normal for her treatment. (Although that certainly doesn't make it any easier...on you or on Kate.) My dad went through something very similar with his chemo treatment and he came through it like a champ, just as I know Kate will. Hang in there and know that we're all thinking of you guys and cheering you on!

Flutterby918 said...

Aww, your poor girl. It's all for the good, but what a path she must travel to get there. Thinking of you all and praying for healing and strength for your girl.

Megan and David said...

That all sounds awful. I am so sad to think about that sweet girl suffering like that. You are all in my prayers.

Looking forward to seeing pictures when you get them up!

Jennifer said...

My heart I'd breaking for you during this trial. I'm still praying for you all.

Charlotte said...

Aww, that sounds so very awful. I'm praying that all of her bad symptoms go away very soon!!

Oh and I didn't get any hair until I was 2 and a half and it was very blonde and thin so you couldn't see it, so I was bald too. Just put lots of headbands on her and she'll look fine!!

John & Michelle said...

Still praying in Athens, AL!

Heather from Ontario Canada said...

(((hugs))) to your darling little girl from Canada

Beth said...

As I read this, tears flowed because no baby or child should have to endure sores, vomiting, morphine pumps, loss of hair, etc. I pictured her laying in bed suffering. But then you add that she's out and about the halls of the hospital being Miss Social. She's amazing!!! I will continue to pray. God bless all of you and I hope that Kate continues to be strong.

Joyce said...

So sorry sweet Kate is suffering. It must be so painful to see this happening to your child, even when it's a normal and to be expected side effect of treatment.

Bald babies are beautiful, as difficult as it will be to see her lose her hair.

Jenn said...

Thank you for updating! I was getting worried when we hadn't heard from you. I hope Kate starts to feel a little better soon! Stay strong, mama!

Anonymous said...

I'm sorry to hear about your sweet baby feeling so poorly, and I will continue to pray for you.

About a decade ago, I was diagnosed with alopecia and have lost my hair and then grown it back in again around half a dozen times by now, in only ten years. I understand the scary unease of having bald spots and knowing it's all going to fall out. I know your darling daughter will remain as beautiful, precious, and wonderful as ever, if not more so.

You are in my prayers.

Katie @ Loves of Life said...

Kate is such a little fighter and I'm sure as a momma it must make you proud to see her up walking again and being the little socialite that she is again:) I'm praying the sores go away quickly and she can get some relief! xo

Katie @ Loves of Life said...

Kate is such a little fighter and I'm sure as a momma it must make you proud to see her up walking again and being the little socialite that she is again:) I'm praying the sores go away quickly and she can get some relief! xo

Hi, I'm Susan! said...

aww i'm so sorry kate is having to deal with this. she is such a little fighter! praying she gets relief from those sores soon. you are all in my thoughts and prayers!

smh72 said...

I was following your journey on twitter. I'm sorry people are so horrible. I think you are an amazing mom and you and your beautiful daughter are in my thoughts and prayers every day.

Lauren said...

Praying for a good night's sleep for all of you tonight! Love you herms!!

cjdubs13 said...

Lots of love to you and Kate. You are both such fighters, it's so inspiring. Continuing to pray for Kate and your family.

Lindsay said...

Praying for sweet baby Kate and you and Alex. Much love to y'all during this difficult journey.

Anonymous said...

I'm so, so sorry Kate is experiencing these awful side effects and that you as her mom must endure watching it happen to your baby girl. Sweet precious angel. She and you and your husband remain in my prayers. You are incredible people. sending you a huge virtual (((HUG)))
Erica

Anonymous said...

Praying for your sweet baby. I tried following your twitter, but it's set to private. I'll just check back here for updates. Stay strong!

*S* said...

Oh my gosh! I'm a first time visitor to your site, and I have to say that I'm very sorry for what is going on with your daughter. She's such a cutie pie, and I'll definitely be praying for her. I hope that she continues to get better!

Anonymous said...

Sending love from NJ.

satto said...

Hope all is well over there. Keeping your sweet daughter in my thoughts.

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