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Mar 30, 2010

Glimmer of Hope or Delayed Reality, Either is a Blessing

From Michelle:

Abby is doing okay today but is a little teary and tired. One of the tougher things about hospital stays is that medical conversations happen in the range of little ears. Most five year old's wouldn't understand half of what we were saying but Abby is one medically savvy little gal. I need to find some crafts or something to distract her tomorrow.

They are having me do chest percussion to help her cough up some of the thick muck in her lungs. Basically, I use my hand to thump on her chest and back. From what I learned so far I think am supposed to do it for about 45 minutes to an hour. Abby is cooperating but the look on her face tells us that she thinks we have lost our minds. Since her bones are brittle from the chemo, I am thinking she might be right. They make a vest that would be a little gentler but we will have to wait for a diagnosis and insurance approval for that.

We met with the new pulmonologist today. He was nice but I can't wait for Dr. Reyes to get back in town. He confirmed the asthma diagnosis and wanted to run some more tests before diagnosing Abby with cystic fibrosis. I love that they are confirming tests before they stick her with that awful label.

Abby will stay in the hospital until after they run a test tomorrow. The gold standard test for cystic fibrosis a sweat test. They look to see how high the salt concentration is in your sweat.

A result of 60 or higher means you have cystic fibrosis, 40-59 means you might have it and if you are lower than 40 you do not have the disease. A week ago Abby's sweat test score was 66. Not good at all.

The plan was to look at her medications to see if any would throw off the test, do the bronchoscopy and then redo the sweat test. If Abby is in the borderline group they will pursue genetic testing.

I am praying for clear answers tomorrow (Wednesday), strength for Abby and wisdom for all involved. It may take a few days to get the results but I am praying we know tomorrow. I will post when we do.

Thank you for all of your sweet messages to Abby. You made her smile on a pretty rough day. You are such a blessing to Abby and the rest of our family.

28 comments:

Marie said...

I was a nanny to a child with cystic fibrosis, and her medical team found it was much better for the child to use a nebulizer, then exercise vigorously for 10 minutes. I'm not sure if Abby's health is good enough for her to do that, but it's far more effective than thumping on the back. Ella had to exercise even if she had a fever, it was that important. Something to think about if thumping on Abby's back is hard on her. You can actually break ribs doing that so something to think about.

whenpigsfly said...

It was good to talk to you this afternoon Michelle. Thanks for being such an encouragement to me! I had called hoping to be an encouragement to YOU! We stay in your prayer corner,
Love
Linda and the crew

Michelle said...

although i am praying your little girl does NOT have CF, i lived next door to a CF family for most of my pre-teen & high school years.

of their 4 kids, 2 had CF.

one of them was a "typical" CF patient, and was often sick.

the other, however is 50 YEARS OLD and mows the lawn, does housework, and honestly there is no sign AT ALL that he's going to be slowing down anytime soon. the only way you know he has CF is that when he coughs, you can hear the stuff in his lungs, but it doesn't slow him down.

because Abby hasn't been sick with these symptoms from birth (or shortly thereafter) there's a great chance that IF she does in fact have CF, it may not affect her as much as it affects other patients. obviously her other medical problems make her case more complicated, and the chemo makes her even more vulnerable to infection, but the fact that she's this old and only now really on the verge of being diagnosed is good news... if you can call it "good news," in the midst of so much trouble.

praying...

- michelle

maddie/cadesmimi said...

Oh my, I am so sorry to hear that more challenges have come into play. I pray every day for God to give your family strength. Abby is one little trooper, to have endured all that she has--and that's only the little bit that we as readers know about.

I will continue to pray for all of you. Sometimes I think it's as hard or harder for the families of sick ones.

Just this past month the grandson of my first cousin was diagnosed with leukemia...he's four. Their journey is just beginning...

I've been a bit under the weather this week, and haven't written Abby my usual weekly letter...tell Abby that Ms. Kathy will get on the ball and get a letter in the mail soon. I hope that she has been receiving my packages...there is an Easter gift due to arrive any day. Love and prayers to all, Ms. Kathy in GA

Debbie said...

I will be praying for Abby and for the concerns you expressed regarding her care and treatment. I can't imagine how you are holding up with all that's going on. Abby is such a sweetheart. May the Lord bless her and comfort her as she goes through all of the tests.

Blessings and hugs to you,
Debbie

Cameo said...

Oh Michelle, I'm so sorry. I don't know what else to say. I can't imagine going through all of this. I'm so so sorry. If I prayed, I'd be praying for you and Abby but right now I'm asking sissy to look over you both. Please let us know via FB too what the results are!

Masto Mama said...

I haven't been commenting because I haven't had much time on the computer but wanted to tell you I read every post and am keeping you guys in our prayers. Sending lots of hugs and love...

Gena said...

Abby is such a little trooper. Bless her heart.
My thoughts and prayers are with you all.

Kim M said...

Abby, I am so sorry you are facing this battle along with everything else. I do know that I pray for you to get better and to be able to fight with everything you've got!

Isn't it exciting to know that Jesus is with you always and He is the one right there with you in the hospital.

This is such a special week, Good Friday is all about Jesus dying on the cross for us, but Easter Sunday is all about Jesus being alive again!!!

Michelle and Brent, I'm praying for peace and wisdom for you and for the medical community to have clarity in running the test and in reading them.

Praying from Michigan,
Kim

Mom to 9 Blessings! said...

Our prayers remain for you and Abby!

Much love,
Jill

Melissa, Multi-Tasking Mama said...

I hate that Abby has to face yet another big bump in the medical road she is on...it just stinks BUT God is bigger. Praying that you can feel that in the marrow of your bones, for the doctors to have wisdom and for peace in your hearts and Abby's. God bless!!

luci said...

Hi Abby! Hang in there! You are such an inspiration to me. Feel better!

JonesEthiopia said...

One of my best friends has a beautiful daughter with CF. Please let me know if you'd like to talk with her if that is in fact what Abby has.

Mamita J said...

We had a CF scare with my son years ago. I read up on it back then. One thing stood out to me. The fact that she's already 5 means that she is "beating the odds".

I'm praying that it's one of her other meds causing the numbers to be high. And I'm praying for your heart. I can't imagine how scary this is on top of everything else.

Sweet Joni said...

Because there are more than 1,000 mutations of the CF gene, symptoms differ from person to person. But if you lick Abby's skin and/or kiss her lips & she tastes salty chances are she has CF.

Ask if they have a CHEST CLAPPER rather than doing chest precussions. Also, chest massaage helps loosen the mucus.

Sorry I cannot write anymore at this time or my feelings will write rather than spirit... just know that I've been sitting here shaking my head & talking to God!

Much Love, Shoulder for you & hugs,
~Joni Lee

Melanie said...

I just had to post that altho we've never met, I sure love Abby and the Riggs family. I follow Michelle on f/b, and before that on adoption.com. Brent, Michelle, and esp. Princess Abby...you are all inspiring and encouraging! Lifting you all up daily in prayer, and sending lots of love from KY

Stoogelover said...

Brent, I've been following your journey / ordeal from a distance, but pray often for you. I simply don't know what to say to you, brother. We go back many, many years ... and I'm left without words. Strange to hear that from an ex-preacher, isn't it? I cannot imagine what it's been like and what each day brings. I can't imagine the drain on you, physically, emotionally, mentally, and spiritually. I can't imagine seeing my child (or grandchild) go through this. The one thing I do know is that Abby is SO blessed to have the parents and family she has!

Amy said...

Praying like crazy still today! LOVE YOU GUYS!

Ann Brown said...

Michelle,

I am praying.

Ann

Are These Kids All Yours? said...

Tears are streaming.....my mind is well beyond what I can comprehend, and my spirit is just praying!!!! Oh my sweet Abby!!! I just can't think of it. Lifting you up to the Father- Healer- Comforter!!!! Love you all soo much! Just PRAYING!

Blessed Again said...

I've been checking in our your blog to follow Abby's progress. Your family is in my prayers.

I noted Michelle's comment about having to learn to do chest PT for Abby. When our son was an infant, he has RSV and pneumonia. As a result, he needed chest PT also. While some of the therapists used their hands (cupped like you described in this post), others used the removable plastic part of an oxygen mask that covers a person's mouth (the kind they use to "bag" someone)...it is just the right shape (sort of triangular) and has a bit of plastic padding around the edges that made it softer when it hit his little chest and back. Not sure if that description makes sense, if you'd like to email me for me info, I'd be happy to share more.

Debi said...

Awesome Abby,
I just wanted to let you know that I pray for you and your family every day and I love you, even though I have never gotten to meet you in person.
I am believing God with you for healing from this yukky lung stuff and that you would be healthy and strong.
God loves you and is always with you. He has awesome plans for your life.
Love and hugs and prayers,
Debi

Anonymous said...

Hi, C*U*T*I*E!!!

A little song for you:

Peanut sittin' on a railroad track,
Heart was all a-flutter,
Round the bend came 99,
Toot, toot, Peanut Butter!

I am going to send you a song everyday! I hope and pray that you feel better every day and that you will be going home soon.

Keep smiling, sweetheart!!

Lots of love from Atlanta, Lynn

cosby2 said...

Praying for Abby to feel better soon and also prayers of comfort and strength for you both. Hoping to see her sweet smile again soon!

Kat said...

All our family, including our five children, constantly ask how Abby is doing. She is in all of our prayers and high on our hearts. Praying!!!!!

TheSooner7 said...

I am praying for you Abby, and your family too! You are a strong little girl and God loves you sooooo much! Praying for good news tomorrow!

Ohiomom2121 said...

As long as they don't reset the chemo clock, I just keep focusing on how close to the end you are getting. Abby just has to be able to deal with these side effects for 233 more days. Surely she can make it! Keep the faith, and feel the prayers for her success. Sherry

Mommy A. said...

Hi! I've been lurking around your blog for a little while. I'm an RT, and wanted to mention that if little Abby is having trouble with the chest PT done manually, then yes, the Vest is great, but they also make something called a exsufflator that may help in her young age. Here is the link to learn more: http://www.coughassist.com/

No, I am not a salesperson. Just providing an option:)