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Mar 9, 2010

Duct Tape Medicine

From Michelle:

Abby's primary doctor (oncologist) has brought in many specialists to evaluate Abby. The specialists have then in turn requested more specialists look at Abby. She is currently being followed by 8 pediatric specialists and has been seen by 4 other types of doctors (not including her pediatrician).

To say Abby is complicated is a gross understatement.

Friends often ask how Abby is doing but how do I honestly answer them when my daughter is being held together with spit, wire and duct tape.

Abby's oncologist is coordinating her treatment but we haven't been able to see her for months. She has been on hospital rotation when Abby has been home and in the clinic when Abby was in the hospital. Abby has seen other oncologists/PAs/nurses but not her primary doctor. They talk to her doctor and the she decides what to do. The other oncologists are great but they only know a small portion of Abby's medical history/status.

I am frustrated/worried/tired. Abby is hurting again. Her headaches are back because the medication to treat them was decreased. It made her CO2 dangerously low and we could have lost her. It needs to be increased to prevent brain damage but it needs to be managed much better this time.

Abby's breathing is still horrible. The CO2 problem causes slow breathing, her airway is weak because of damage from the chemo and she has asthma. No official asthma diagnosis yet but 3 doctors (who are treating different parts of her anatomy) suspect she has it and I have seen many signs that support their opinion.

I don't think we can safely care for Abby at home without medication and medical equipment to help her breathe but I can't get them without a doctor's order. Abby has an appointment with one of our favorite oncology PAs today. I am praying I will be able to express my concerns clearly and that she will be able to help Abby.

We need your prayers more than ever.

45 comments:

Mom to 9 Blessings! said...

We will pray steadfast today for Abby and all decisions!

Blessings and love,
Jill

Sonia said...

Michelle,

I know how it feels about so many providers and not seeming to have anyone closely following who knows the whole story. They all only see their little piece. My daughter just spent most of the last month at Duke for what was supposed to be an outpatient procedure. She has Alagille syndrome with major heart defects and needs a liver transplant but can not get one at this point. I feel like I am constantly bringing new providers up to speed, having to explain the quirks and intricacies of her system, and about the time I get the newest folks up to speed, someone else enters the picture. Bless your heart! I have expressed my frustrations, too. And they usually hear and respond appropriately. If not, I've learned to keep on going.

I am praying for you and yours and have been for a long time. Right now I empathize with where you are, the fatigue, the weariness, and total frustration that it feels like you are the only one who really sees the whole picture and is on top of it detail by detail. Sometimes I just want to scream that I want to see my child's doctor, the one in charge of her care. And that's all.

Please know you are being thought of and prayed for today regarding this. And, of course, Abby too.

Sonia Yarboro
www.caringbridge.org/visit/claireyarboro

Becky said...

I will be praying for Abby, and all the family. She's much a strong little girl, she's come this far, I know God will help her through the rest. I will pray the Doctors make the best decisions possible for Abby at this time.

Becca Harley said...

praying praying praying. Praying for healing and peace for Abby. Praying for wisdom for the doctor's as they coordinate her care. Praying for you both as you take such wonderful care of abby as you juggle a large family and work responsibilities. I only wish that we lived closer and could take some of your burden from you.
Hugs and prayers from NY
Becca
ourjourneyto6.blogspot.com

Oh well, hey! said...

My prayers will be with you today that the PA's heart, mind, ears and spirit are open and listening to you and your concerns. I know that our faith has brought you so far. May He continue to give you the strength that YOU need. I pray that the Great Physician above will send one of his earthly angels to you today to give Abby relief from the pain - and healing for YOUR and Brent's hearts. Thinking of you and lifting you in prayer - Juli

Rod and Amy said...

Praying in NC.
Amy Sharp

Anonymous said...

Praying!

Deciduous Heather said...

SO much of medicine is exactly that, spit, wire, and duct tape. I am praying that you will be able to be a firm advocate for Abby today. Sometimes it takes a little longer conversation to convey what is going on to the Dr. Press on....and I am praying the Dr is receptive and will make some changes so that Abby will make a turn around for the better. How frustrated you must feel...continued prayers for you and your family and sweet Abby! <3

Trennia said...

praying

Trennia said...

praying

Marlo said...

We've been in that frustrating maze of doctors wishing that there would be someone to take control and manage the ENTIRE child. I don't think the current system of every doctor treating every child is necessarily the best way. Let them know your complaints. I HATE to complain, but it always seemed like the squeaky wheel got the grease.

Anonymous said...

Praying for wisdom for everyone involved. Peace be with you.

Debbie said...

of course our thoughts and prayers are with Abby and all of your family. I can't begin to imagine your physical and emotional exhaustion. Do your best to hang in there...

Nora S. said...

Michelle--I'm sorry Abby is having so many difficulties right now--I can't imagine 13 doctors (my daughter has 6 and it's difficult.) I can imagine your frustration, fatigue, and worry as you work to get your daughter the proper care. Is there any way you can get in to see her primary oncologist who knows most about Abby's big picture? I will pray today's appointment is fruitful and that a plan to help the breathing and pressure problems is decided upon. Let us know how it goes today. Know we are praying for you and and send a long distance hug...

Nora
CT

Kat said...

I've got tears in my eyes. My heart is breaking for what you guys are going through. Sweet Abby....

Please know we will be praying for wisdom, clarity, and discernment for you all...and especially for Abby's healing.

Anonymous said...

My heart breaks at the pain of a little 5 year old girl whom I love so much without even meeting her. I am praying and praying. I am also praying for your entire family, I know how tiring all this medical stuff is, but little Chrissie is nothing compared to all of Abby's hurts. Take comfort that God is sovereign. Tell Abby that Mattie loves her!
Mattie Patterson

Vanessa said...

Michelle, I'm praying for you!! I can only imagine how tired you are!! HUGS!!

Amy said...

Just want to let you know that I continue to pray for sweet Abby daily. I will continue to pray for your strength and peace as well. Hoping you get the orders you need from the Dr. today. I finally got what Hannah needed on Friday...after much push...steriod injections in her knee to stop the swelling so her leg discrepancy won't be any worse than it already is. I also finally got an order for her shoe insert so that maybe she will finally be able to run and play again. Why does it take so much to get what we need??? Doctors need to listen to the Mama Bears better than they do!!!

PRAYING!!!

Holly said...

oh Michelle. Sweet Mama. I am praying. Praying. Praying.
Comfort. Peace. Healing. Wisdom. Discernment. Grace. Truth. Revelation. Encouragement. JOY.
Laughter. Relief. Provision.
In JESUS' name.
Love,
Holly

whenpigsfly said...

My heart breaks for you Michelle and I know God's heart is so tender toward you , Abby and your entire family. It almost sounds trite to say that we do pray for Abby every single day, butwe do. Naomi often asks me when she gets up in the morning 1) if I have heard from Liberia and 2) how is Abby? and then we pray. i so wish that we lived closer so that I could tangibly help with something, meet for coffee, let our girls visit more often..... but all that aside, we DO pray for you faithfully and often!
Love
Linda and crew

My Cottage Charm said...

I am new to your blog and don't really know what's going on, but I do believe we have a mighty God who is still in the business of doing miracles. It sounds like your Abby needs a true touch from HIM. I will pray for you and your family. Bless your hearts. Keep your chin up and your faith in God.........he is ultimately in control of all things and he is faithful and merciful to what is right.
Have a blessed day :)

Wendi Taylor said...

Father, I lift Abby up to you in prayer right now and ask for your healing to wash over her body, for your wisdom to guide the hands of her doctors, and for your peace to fill her mother's heart. I know that you can heal Abby completely right now. I don't know if that is in your plan for her. I do know that regardless, you are in control, and it is ultimately your plan that will be accomplished. In Jesus name, amen.

James 1:27 Family said...

Oh, Michelle. I'm so sorry. I know you must be just so broken inside. You want to "fix" her and you can't. That is a deep pain that one can only know if they have been there. I'm so sorry. I'm thanking God that you know Him and can rest in His peace. How do people do this without Him?

I will continue to pray for the whole family and of course for miraculous healing for Abby.

Much love,
Amy

Pam, mom, honey, said...

praying, this is so hard, hoping you get some answers today

Emma said...

I don't know what to say now other than I'm praying for you and Abby. It sounds so insignificant, but that is all I can do being in this location. I know though that God can do much bigger things than I can anyway so that's probably the best.

Sharing the love from across the ocean in Orkney islands,

Emma

Amy said...

Praying for sweet Abby and for you.

Are These Kids All Yours? said...

PRAYING! That is sooo hard to deal with. No idea what it feels like, but we will continue to pray!

Hope said...

(((Hugs)))
I'm always praying for Abby, your family, and her medical team to make the best decisions.

Please email me if you ever want a shoulder.

Masto Mama said...

Praying for you guys...(((hugs)))

Renee said...

Praying for wisdom for the Dr.s, healing for Abby, peace and encouragement for you all.

Much Love

Charisa said...

Praying for you and Abby. Hope that you are able to get somewhere with the doctors today.

Much Love,
Charisa

Sandi Lerman said...

How frustrating for you this must be on a daily basis, and how incredibly exhausting for the whole family! I am sending extra prayers for comfotable, smooth breathing so that both of you will at least have more peace and energy to cope with the rest of the complications.

Laurel said...

Praying for you!!!

Wrote out a prayer for you over on Linda's blog.

Big Hugs!!!

Laurel & the gang :)

Kylie and crew. said...

Praying for Abby! It's frustrating to me that her primary oncologist hasn't seen her months! That doesn't seem right to me. I'm praying that as you stand your ground and fight for your daugther that she will get what she needs! She is blessed to have you as her mama.

Anonymous said...

I am so sadden to hear this about Abby. Each time i check your blog, i am hoping to hear she is better. My prayers are with Abby and your family. Only God can give the comfort,strength and understanding that you need. My heart breaks for you all. Abby has endured so much, i pray God will touch her little body and heal her. I lost my husband to cancer 2 yrs. ago and it is terrible to have a loved one go through that, but a little child, i can't imagine what all of you are going through. Somehow when we are so low, we have to squeeze Jesus's hand a little tighter...He will be there and carry us through.God bless you Abby and your family is my prayer.

Debi said...

Joining my prayers with so many others for amazing Abby and your family.
Praying for the appointment and clear communication and grace and strength and healing.
Love and hugs and prayers,
Debi

Janie said...

I have never met you or your Abby, but feel that I know you because I've followed your blog for at least a year. I am praying for Abby, for you, and for that PA that he will not be tired or in a rotten mood when you get to see him. I pray that his ears, heart and mind will be open to listen and act on your concerns. Only the Parents know best for their baby.

You are in my thoughts

maddie/cadesmimi said...

God bless all of you. I know this has to be tough. I will continue to pray for all of you. Ms. Kathy in GA

Oh well, hey! said...

I wanted to share a thought I had for you/Abby after a Professional Development Day at our school system...Biofeedback. Our presentation focused on "warming the hands" and she was able to achieve great success with adults and children suffering from migraines,ADHD, anxiety, test stress etc. I don't know if it would help alleviate some pain for Abby or not - it might be worth looking into at least. If you are interested I could send you information that I received. I would have emailed personally, but my computer crashed and along with it - your email address! Juli Higer

Biofeedback is the process of becoming aware of various physiological functions using instruments that provide information on the activity of those same systems, with a goal of being able to manipulate them at will.[1][2] Processes that can be controlled include brainwaves, muscle tone, skin conductance, heart rate and pain perception.[3] Biofeedback may be used to improve health or performance, and the physiological changes often occur in conjunction with changes to thoughts, emotions, and behavior. Eventually, these changes can be maintained without the use of extra equipment.[2]

Biofeedback has been found effective for the treatment of headaches and migraines.

Donna said...

Oh Michelle and family - we are praying! We are praying so hard for Little Miss Abby and her doctors and her parents, for your strength and their wisdom and her healing.

Shannon said...

Oh Brent & Michelle...I am praying! I know that we serve the God who went to the cross and understands all that we are burdened by. I am praying that He is holding you up by His mighty hand. Please know that you come to mind often throughout the day and I am praying for you!!!!
Blessings,
Shannon

Blessed Mom of Four, Now Five said...

It's been a while since I've checked in.

You and Abby will be in my prayers...praying as I type...for a miracle, Jesus, the kind that takes the world by surprise, that you may receive honor and glory!

Yesterday, I was pleading with friends and family to pray for our Ellie. (Ellie, who has lots of doctors for completely other reasons. ) He showed up today in a BIG way. May you see His light!

Carrie said...

Praying without ceasing...I wish I was closer so I could help you more. God hold you all close and give Abby strength and healing. she is a brave strong girl.
Love and Blessings,
Carrie
www.hiswillandgrace.blogspot.com

Ron Cooper said...

Prayers coming your way!

Otter Mom said...

My daughter has asthma. She is nearly 18 and was diagnosed about age 2 1/2. It was very hard at first, we eventually got into a routine and got it under control and now she is in what is considered to be good but good is not always what it sounds like. She has very few problems now, but it took many years of treatment including allergy shots to get her to this point. I can not imagine how much harder it would be for Abby, with all her other health issues. She is constantly on my mind and in my prayers.