Tuesday, March 16, 2010

Clarification

Today, it was clarified to us that the plan for any future bleed does include surgery. The GI doc said that Maggie's pattern is a bleed every 48-54 hours; if she follows this again, tonight into tomorrow morning would be the time. Everyone is ready. Or, she could not follow her schedule.

The main ICU doc said that if Maggie is like other 2 year olds, she would know that all of these plans are in place and she would decide not to have another bleed. Let's hope that's what Maggie decides to do. If she bucks the pattern and gets through tonight and tomorrow without bleeding, that would be a hopeful sign, per the GI doc. We are hoping that the medicines that they've started will help her ulcers to heal.

Overnight, Maggie had a fever of 102. So they've added more antibiotics and an anti-fungal to her medicine regiment. They are also testing her to see if she has any congenital immune deficiencies that would explain why her regular pneumonia turned into ARDS, why she continues to spike fevers without positive cultures, why all of this has gone the way it has.

Our hopefulness in this situation really fluctuates. We are finding it tempting to sleep the day away--looking for reprieve. We are afraid of the potential surgery. We are sad to see Maggie go through so much. We are overwhelmed and tired of watching her monitor for her heart rate to increase, for her blood pressure to drop, or for her oxygen saturation to drop. We're tired of all of this and can't imagine it ending anymore.

That's all we have so far. Pray for no bleeding, but for healing.

33 comments:

O'Briskie Family said...

praying. not only for maggie but for you and your family- you all must be so tired, emotionally drained etc. I also pray for her doctors nursers and everyone else involved in Maggie's healing.
i love you

Unknown said...

I'm posting this again since you just published an update and I want to make sure you know:

Prayers coming your way, of course..that's a given. In addition to that, if there is anything I could do to make your stay at CCHMC more comfortable, do not hesitate to call. This means: fresh pillows, dinner, lunch, a non-hospital blanket, cards, anything distracting, books, comfy clothes, pop that isn't gift-shop/vending-priced, snacks, movies...I know those things are small and don't help the bigger picture, but sometimes the small things bring the smallest comfort. Again, please don't hesitate to call.--
Michelle Maegly

Anonymous said...

Praying for Maggie, for you and the family, and for the doctors & nurses. Can't imagine what this is like for you. It is difficult for me to read without getting tears,so I just can't fathom what you are feeling and experiencing. Know that many, many people are praying for all of you, holding you up to the Lord, and asking for his healing for Maggie and for comfort for all your cares. We will keep praying. Love, Cousin Carol

Joyce Nosker said...

Still praying upon every thought of Maggie and both of you, which is about every ten minutes. It must feel like torture to mostly only be able to wait and watch. God grant you rest, strength, courage, peace, support, and comfort in knowing that He is with you and Maggie always. My daughter Elizabeth (Whitney's former student)is also praying like crazy.

Jo-Anne said...

We will never stop praying for strength and healing for you all and Maggie. You're all so amazingly strong and it's truly inspirational. Thank you so much for the updates.

Michele said...

Praying for healing and strength always.

Jack & Michele Collins

Anonymous said...

I know it must seem that there is no light at the end of the tunnel..
Miracles DO happen. They do....Praying for all of you.

T.

Anonymous said...

We are all praying for you- hang in there.

Kendra said...

I read up above that someone was asking if there was anything tangible that we can do, food, blankets, etc. I had actually thought the same thing. I wanted to send you something just to let you know more that we are right there with you praying each step, but didn't know what requirements the hospital has. I would be there in Cincy with you if I could be. Praying for rest and strength for you all, and healing for little Maggie.

Anonymous said...

I have never met you and have been praying daily and nightly, several times every day, for your sweet little girl. I am a mommy too and my heart aches for both of you and your little peanut. God bless and keep being strong!

Anonymous said...

I am so glad to see this post. It sounds much better than the last one. Of course, what do I know. I am praying for strength and that you two can find time to rest and sleep. I pray for Maggie that there will not be another bleed and that there will be healing. I was over at our church chapel at 6:20 this morning praying for Maggie. God is faithful.
Love,
Sue Archer

Anonymous said...

This must be so unbelievably hard for you all. Maggie and you both are in my prayers.
-Delanie Isaacs

Anonymous said...

You don't even know me, but I'm praying, praying, praying! Your little Maggie is so precious. Praying for healing in Jesus' name!!
-Beka

Anonymous said...

I have prayed for complete healing for Maggie all day! I pray this break from bleeding is the beginning of a miracle! You two are wonderful parents. I pray that you can get some rest and have an uneventful evening.

Love,
Bethany

Anonymous said...

Maggie is such an inspiration to me and so are you both. Prayers to God for little Maggie to heal her bleeding and strengthen her body's defenses and God's peace to you both. Following your blog has changed my perspective on life. All the petty day to day things are so insignificant to me now. Thank you Maggie, Mom and Dad. Keep strong in hope and believe in miracles.

Anonymous said...

"Hear my cry, O God; attend unto my prayer. From the end of the earth will I cry unto thee, when my heart is overwhelmed. Lead me to the rock that is higher than I ... " Ps. 61:2 My heart goes out to Maggie and the journey God is with you in this time. His benefits are many. God is a refuge for us. I am praying for no bleeding and Maggie's healing.

kensingtonlawyer said...

I know you are so exhausted. ICU is such a draining experience, and living the life of watching those monitors is a nail-biting experience. I am so sorry for all you and your precious Maggie are having to endure. Praying for wisdom for the doctors, and strength for all of you to get through the days and the extra long nights.

Love and prayers,

Monica Miyashita, Mom to ^Liddy^

Anonymous said...

Sending my love and prayers constantly.
~Janette

The Moores said...

Just want you to know the Moore family continues to hold you all up in prayer... many times throughout the day. Andy & Whitney, you are wonderful parents to a most precious little child of God, Maggie! We pray that God's peace which surpasses all human understanding will be with you & that Maggie has no more bleeds along this path to total healing! Amen & Amen

Anonymous said...

praying for maggie and remaining hopeful. much love~mz

Susan DiGiorgio said...

I am so glad the doctors have a plan depending on the path Maggie's body takes her on. I pray that her bleeding stops and that her body begins to heal. I pray for your healing as well, as you have to be drained completely.
When I look at Maggie's pictures on your website I see her sweet happy smile, chubby cheeks and all, and can't wait for her to heal so that smile will light up again. May God bless you tonight with some rest and some ability to take your eyes off the machines and take a breath! God bless you!
Susan DiGiorgio

Anonymous said...

All I can do is pray and ask others to pray, too. Sometimes that is all we have...prayer. But to whom we are praying makes the seemingly simple words fill with power and might! God is able to heal Maggie and give you both the peace and strength to get through this long journey. May our prayers continue...fervently!

Debbie said...

Sending our love and prayers for healing for sweet Maggie. We ask for direction, guidance and wisdom for all the medical team attending to sweet Maggie

Debbie said...

Praying for freedom from infection, no more bleeds, healing of the ulcers, lungs and of course, the leukemia. Praying for strength, energy and peace for you and your extended family. Praying for wisdom for the medical team and that they just get to remain on the sidelines.

Debbie M.

Anonymous said...

May the arms of our loving Lord hold you and sustain you and provide His healing touch for Maggie. Our prayers continue.

Anonymous said...

Praying for your little girl...as well as strength for you.

Anonymous said...

I have run out of words to express my sorrow for what you are all suffering.

Do want you to know I continue to be praying for you.

Love and prayers always.

Great Aunt Phyllis

~Tina Miller~ said...

Dear Andy and Whitney

I agree with Great Aunt Phyllis. It is very hard to find words to express our thoughts for all the unbelievable suffering and traumatic things you have and continue to endure.

Please know that we are constantly praying for precious Maggie to be healed of all of this! And continued prayers for you both as well.

~DON'T STOP BELIEVING~

Warm Hugs & Much Love To You All

Hang in there!

Love Tina and Bill

Anonymous said...

I hope that no news is good news this time and that Maggie has not had any more bleeds. I pray that she continues without a bleed and can get that fluid off and her lungs heal. Praying for your strength as well and recruiting all our friends in prayer.
Karen Cooley

Dick Barrett said...

Andy, Whitney & Maggie,
You continue to be in our prayers and we will lift you up once again this evening at our Time for Prayer.

Pastor Dick Barrett
Oak Grove Mennonite Church
West Liberty

Anonymous said...

I too am hoping no news is good news.......

Anonymous said...

Just want you to know that we are thinking of Ms. Maggie and you during this "waiting period". We are praying for no bleeding and healing.

Love, Jason, Sara & Nan Bouchard

Anonymous said...

Waiting to hear news and praying for you all and that there is a light at the end of this long, dark tunnel. You are all heroes, your darling Maggie especially in this heroic fight. God bless her and may He heal her in His infinite mercy.
Christina