Monday, 25 June 2012

Day 3

1:00 am rolled around and our great night turned into a nightmare. Millie started screaming in pain. The only time I have heard her sound like that was when she had her kidney stone back in January. It was mortifying. Remember our handsome nurse, Eric, well now she wasn't enthralled by him anymore and she was yelling at the top of her lungs for him to DO SOMETHING. She was screaming HELP ME, PLEASE HELP ME over and over again. Other then keep her steady on the toilet and hold the garbage can in front of her there wasn't much I could personally do and I felt so helpless. Eric was great and although Millie was furious with him he got her pain and nausea under control. Before Millie fell back asleep she begged me to call her dad. She wanted him to come give her a blessing and I am so glad he did. I know that God hears our prayers and Millie didn't wake up again that night. This morning she is her happy playful self and she actually just got done doing my hair. She told me it's the new fashion, and my bangs are sticking straight up!

Our nurse today is one of our initial favs, Kathy. We haven't had her since February when Millie first relapsed but I was so happy to see her face this morning. She just premeditated Millie with some benydral and is now getting ready to administer platelets. Her counts are really low today and she got a minor nose bleed last night. So glad it wasn't worse, they are nearly impossible to stop when their platelets were as low as Millie's are. 

Millie's test results are back and we know what has been causing all the pain. She got a bacteria called C-Diff. it's from all the antibiotics she is on. She has gotten it once before and usually it takes 2 weeks for it to heal, but with her transplant she will have it for the duration of our stay here. Her body can't fight anything off so once she gets something it sticks with her. They did start her on a new antibiotic which is a ironic to me since that's what caused it in the first place, but hopefully it will at least help with the symptoms and things won't get worse.

Millie is also hooked up to her IV pole 24 hours a day. We have rigged it up so that she doesn't have to move it around as much,  but it does cause a problem when her cords get all tangled up, but it's better than her having to drag that dang thing around with her all the time. It hasn't slowed her down too much, other then her dancing. She feels like she can't dance now. 

Today she will receive:

TPN and lipids
Amphoteriein (iv antifungal)
Actigoll pill (protect liver)
mouth care (4x day)
zofran (nausea every four hours)
meropenem (iv antibiotic 3x day)
Flagil pill (c-diff antibiotics 3x day)
Ativan (if needed, usually once a day or so)

My Austin man is spending the day with his Aunt Kim and her kids. I hope he is a happy boy, Brady mentioned that he was very sad this morning and just wanted Brady to stay home with him and snuggle. This is draining on Austin too.

As for the rest of the day it went smooth considering. Millie did throw up a handful of times, but I just feel like things could be so much worse. 

Pictures... my phone is still giving me issues, but I'm working on it. I'll post when I get them. 


Chelsie said...

Oh Amanda, I'm so sorry. Those screams are something you should never have to hear, and Millie should never have to say.

I'm glad they got things somewhat under control for now. I hope that continues.

You are all the most wonderful, gracious, loving, and supportive people out there. You support each other and those around you. Incredible.

The Sneddons said...

Amanda, I am new to your blog but I fell in love with Millie and your whole family from the moment I read the first post! I have a 7 year old daughter, Hannah, who wants so badly to help Millie in some way so she is going to have a lemonade stand this weekend and all proceeds will go to Millie whom she hopes to meet someday! Your family is in or prayers and tell that beautiful baby girl how much she has touched our hearts! We love you flamm family! Xoxo The Sneddon family, Brigham City Utah.

lindsay Roscoe said...

That breaks my heart. I imagine that "cute" nurse wanted her happy really fast. If Millie is hurting, you know she is really hurting.

Jesse C said...

That breaks my heart. I'm glad they were able to figure out what is going on and get the pain under control. We are with you.

Danalisa said...

oh my! words you never want to hear from your child! So sorry it was a rough night but I am glad that they got it under control. I hope and pray it continues.

Colleen Hoyt said...

Dear Flamm Family,

I too, am new to your blog. However I have been keeping up on Millie's progress through a mutual friend, Maddie Barker. I had the opportunity to meet you and Millie briefly at Brooklyn Barker's Birthday party last December. I was there doing Glitter Tattoos and painting nails. I had the extreme pleasure of meeting Millie that day when she kept me company while I was working and proceeded to talk my ear off,(LOL)about everything under the sun except her Leukemia.

I had no idea she had been sick until the end of the evening when Millie had asked about my availability for her "Kick Chemo Party" in February.

When I heard that Millie had had a setback, all I could think of was "What can I do to help?" I saw that friends and family members were coming together for Millie's Princess 5K Run.

Of the many things Millie and I talked about, she mentioned her love of glitter. It was truly a bonding moment for me, as I too love glitter. So, I thought let's get our glitter on for Millie. I contacted Christine Bowman and received a lovely invitation to participate. So, I will be there with bells on, applying my Glitter Tattoos to any and everyone. I know that this will be an amazing event and I'm so proud and happy to be a part of it. I'm so excited to be helping out in some way. It will be a day to not forget.

My cup runneth over with peace and love for you and your family. Your strength is a inspiration to me, and I thank you for sharing Millie's story. She is truly a ROCKSTAR!

Much Love,
Colleen Hoyt
Glitteriffic Tattoo Parties & Events

Ashley Richards said...

Oh Amanda,

I am so sorry about all of this. When you said that you felt so helpless and that sometimes you feel so mad that she is going through this, I felt the same things just reading it. I just wish I could take it away.

I found your blog through Keri Evans Cannon. I have just fallen in love with Millie, and your entire family. What a fighter that sweet Mills is. Honestly, Amanda, I can tangibly see and feel her spirit through your words and pictures. Almost as if she had been prepared for this fight. She is one special daughter of our Heavenly Father.

Don't give one more thought about Austin and feeling guilty for not being there for him. He will so completely understand, and things will be normal once again. They will. Hold onto that. This will not last forever, although I'm sure the days seems to drag. How I wish I could fast forward 2 months, or take the mouth sores away from Millie. I would take them for her.

We are praying for all of you. I believe in the Priesthood power of God. He can and will help her through this. Oh, how mindful he is of all of you at this time.

Please call on me anytime. I have an almost 3 year old and almost 2 year old, and man would they love Austin. I just live in the neighborhood above Granato's in Holladay / East Millcreek area.

Know how loved you all are, and that so many are uniting their prayers on Millie's behalf. This will end and you will be home as a family once again.

I love you!

Ashley Richards
(801) 597-2722

Shawna Wilson said...

Oh that C-diff. I can only imagine the pain it causes. Tenley had it only once when we were done with treatment, and I knew by her cries that it was a horrible pain :( I hope the new antibiotic will help, and I KNOW that priesthood blessing will definitely help. Those blessings are what got Tenley and I through a lot of hard times. Once again, I think of you guys always and can't wait to see the amazing turnout of love and support this Saturday! I love this Colleen lady already and her glitter she is going to share! SO AWESOME!!!

Hope you have a better night tonight!
ps - Kathy is one of my top favs too :)

The Church's said...

Oh C-diff is no fun! Just make sure you guys wash your hands!! I am sure that night was horrible for you but I am glad they got it under control. Hang in there!