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Mar 17, 2010

Mom's a Mess

From Michelle:

Thanks for praying for Abby and me on Monday. She handled the lumbar puncture (spinal tap) and chemo beautifully. She doesn't like them but cooperates and is not scared. Thank you for praying. They used to terrify her. I will never take this blessing for granted.

Abby's intracranial pressure is up again. It was 24 (normal is 8-14). That explains her headaches and grumpiness. She is normally a joy to be around but for the last couple of weeks, the pain has made it harder for her to handle noisy siblings and busy environment. I am scared to give her many of the extra doses of morphine because of her breathing problems.

They recently decreased the medication needed to treat her pressures because it was causing a dangerous side effect that could lead to coma or death. Yikes! Now they are playing with the doses for the medication to treat her pressure and the one to counteract the side effect. I hope they get it right soon.

This one makes me a little nutty. Your body tries to fix the side effect (low co2) by causing you to breathe very slowly. That is the last thing a child with asthma and obstructive apnea needs. And how can you get the rest you need if you aren't getting enough oxygen while you are sleeping?

Abby's oncologist did prescribe a rescue inhaler. It is a huge relief to have it for the times when Abby is in trouble. Thank you for praying specifically for that.

I have been trying to take care of Abby's needs for specialists in our hospital's network. It makes sharing of medical records/test results between offices so much easier. The only problem is that it was taking forever to get an appointment with a pulmonologist. Two of Abby's doctors want her seen by one as do I.

I finally took a "big girl pill" and called the pediatric pulmonologist who took care of my daughter, Katie. I love this doctor and trust him completely but I hoped I would never again have to bring another child to his office. Walking back into that world has opened the floodgates on my emotions and I have cried more tears than I thought possible. I guess the wounds from losing a child never fully heal.

Thankfully he will see Abby on Monday. Also, as part of her chemo cocktail she will get steroids for the next 5 days. They were prescribed to fight her cancer but will also help to calm her asthma down.

So for today, I am trying to focus on being with my kids and just trying to make it through the next few days. I miss Katie, but I have a family here who needs me now.

Your prayers and encouragement are the glue that are keeping my heart pieced together. Thank you for continuing to stand by our family.

26 comments:

Kelly L said...

I will continue to pray.

Love to you
Kelly

Kathy said...

Life is a series of ups and downs...yours is just very intense, isn't it? You have every right to be "as mess". I think you must be "super mom" to do all that you do. I am glad that Abby has an appointment with the dr. on Monday. There are a lot of us out here continuing to pray for all of your family, not just Abby. Thanks for the updates. Just take life one day at a time...Hugs and prayers, Ms. Kathy in GA

Shannon said...

Michelle,
I am praying for you. Praying that the Lord will carry you along with Abby and the rest of your family.
Blessings on you sweet woman!
Shannon

Jesse, James and Lindsey's mom said...

Prayers to you Michelle! I am glad Abby is doing ok now. I know what you mean about seeing your late daughter's doctor. I had to do that with Jesse (see one of the docs that saw Chelsea) and the first time was the worst for me but then it got better. Big Hugs from Alaska!

Stephanie said...

I am sorry to hear about your sadness over Katie. I send you {{hugs}}. Maybe when things calm down you can share more about her, if it would help to talk about it.

I'm glad to hear that the doctors are trying to help Abby. I still pray every night, especially for wisdom, courage, patience, and stamina for you and Brent.

My daughter has asthma too. I read that kids who eat the most whole grains and fish don't get asthma as often. I can't even get my daughter to eat tuna....sigh She had a bad year last year. She missed a lot of school and scared me to death a few times (retracting-I think it's called). We homeschooled her this year which has kept her healthy-only one cold this year and she got through it with only a few doses of inhaler. We got a peak-flow meter which really helps me decide if she needs the inhaler. I took her outside today though and her nose started, so I guess she has some allergies too. Asthma in kids is on the rise along with diabetes, kidney stones, cancer and everything else. I just don't feel like God intended us to have all these ailments, especially our children. I pray for you and I'm sorry you have to watch Abby suffer.

Much love from NC,
Stephanie

Mom to 9 Blessings! said...

Michelle - my heart breaks for you and Brent...and for Abby!

Our prayers remain for you and as I host the study of His names I am now constantly reminded who is standing by us as we go through every single day!

Elohim (Abby's creator)
El Roi (The God who sees Abby)
El Shadday (God Almighty)

He is all we need and will take perfect care of her according to His plan and will for her precious life!

I love you!
Jill

Kelli said...

Hugs and prayers to you always.

Carey said...

Oh Michelle, I can't imagine your heartache! I have tears in my eyes just thinking about it. Praying for you. Lord grant Michelle wisdom and peace. Also, Lord God, could you throw in a little laughter and fun? Wrap your arms around this family and heal their hurts. Specifically, Lord, please heal Abby. If it is your will, give her a long life on this earth. Thank you that Abby is such a blessing to those around her.
Amen

Nora S. said...

Michelle,

It's hard when so many issues are facing you at one time. I pray Abby's meds. can get balanced so her pressure will come down, she will feel better and yet not be at risk for breathing problems. Gald you got an appt. w/the pulmonologist--tough retracing such sad steps.

Take a moment to be alone, call up your wonderful friends, and hopefully that wonderfully supportive husband will be home soon.

Prayers are with you today.
Nora

Mandy said...

Your momma heart has been through so much. I am praying for you and Abby.

Holly said...

Big hugs and prayers. I had no idea you have a daughter in Heaven!
Praying for relief,
love,
Holly

Pam, mom, honey, said...

Do you carry around a notebook with all the information. I am amazed and encouraged by how well you keep up. praying for strength and healing

Wendi Taylor said...

Oh honey, I wish I had the words to comfort you. Hope this hug will help... (((((((((((((((((((((((((hugs))))))))))))))))

The Gobble's (Lanetta) said...

prayers, love, and hugs always..

dg darling said...

I know you have mentioned Katie before and I was wondering if one day you might tell us her story (maybe you already have and I missed it). I'll be praying for your family!

Anonymous said...

Does Abby have a nebulizer? We have found that more medicine tends to make it into our daughter with the nebulizer than with an inhaler. With a rescue inhaler I guess you need the medicine in her asap though. When our daughter is not sick, we use the preventative inhaler. When she is sick, we give her the same med (pulmicort) with the nebulizer and then an additional treatment with albuterol. Notsure if Abby can have either of those meds but just thought you might want to ask about getting a nebulizer.
Many prayers for you and your family.
Love from TX, Angie

Debi said...

Michelle,
Thanks for taking the time to update us.
Praying as always for you, Abby and your family. Praying for your physical, spiritual and emotional strength and wisdom for every decision Praying that the empty places in your heart where sweet Katie was would be filled with the presence of God Himself and that He would comfort you and give you peace.
Love and hugs and prayers,
Debi

Michelle said...

BIG warm HUGS! And of course, Many many prayers
Love,
Michelle Mann

James 1:27 Family said...

Oh, Michelle. You are not a mess. Not even close. And you don't require any "big girl pills." You might be the big girl pill dealer or the big girl pill inventor, but you certainly don't need any. We are all learning about how to take life with grace from you.

I did not know about your daughter, Katie. I'm sorry for your loss and glad for this opportunity for remembrance and grieving. Tears are good!

I am praying that our loving God continues to hold you close.

Love in Jesus,
Amy

Masto Mama said...

Hi Michelle, I'm so sad that things are so rough for you guys right now--I'm all teary about it right now! I'm praying for all of you, especially for you and Abby; sometimes it's just as hard on mom as it is on the sick child, albeit in different ways. May God's peace hold you firm as you continue to press on.

(((Hugs)))

Ann Brown said...

Michelle,

thinking of, and praying for you all. You are so kind to lend me so much support when you have so much going on! Glad you are seeing a pulmonologist. Has an ENT been consulted?

Hang in there! We're praying, and sending hugs!

Ann (and Elke)

Anonymous said...

I am so sorry for all you are going through, and the past that hurts so bad. I will be praying for you and your family, God is our only help. Being a mother myself, my heart aches for you.

Anonymous said...

I am so sorry for all you are going through, and the past that hurts so bad. I will be praying for you and your family, God is our only help. Being a mother myself, my heart aches for you.

PJ said...

Hey Michelle! Y'all are still on my Prayer Line and will continue to be. I will add more to your prayer though and ask God to give You peace and solace in your heart for Katie. It is Never meant to forget that person, but I don't think that God intends for us to Grieve the rest of our lives either. I told a friend of mine the other day, that I don't mean to sound callous but I really believe in my heart that even though we will mourn and miss our loved one whom We lost, we are to "Rejoice" in our spirit, because they are with the Heavenly Father and we will see them again.
I hope that didn't sound too cliche-ish, but I felt that you needed to hear that in my spirit.

My heart goes out to you and my prayers go up for you.

Love and Prayers,
PJ

Christy said...

I am praying for you guys right now. WOW, my heart goes out to you. Have you written about your daughter Katie? I like to know the testimony of her story. I will be praying that the Lord gives you great peace as you see the doctor on Monday... the peace that only HE can give. May that peace wash over you and Abby from head to toe. I pray that you are strengthened through the JOY of the LORD. FInd rest in the ALmighty... he has already seen you through this hurddle as well... he has walked this road... and is now walking with you, rather carrying you through. May the Lord bless you with some sort of visual sign of HIS goodness on Monday... to the doctor.

Wendi Taylor said...

I hope everything is okay. I always worry when I don't see updates, that maybe Abby has been hospitalized again. You are in my thoughts & prayers. ((( hugs )))