Our Quiverfull - bumpity bumpity bump

Our Quiverfull

Oct. 28, 2009

bumpity bumpity bump

Posted in Noah Updates

Noah continues to bumpity bump along, doing a little better here, a little worse there. Many of his labs are considerably better - his CRP (an indicator of infection which should be 3 or less) was a.most 100 when he was admitted and is now 20-something. His coagulation factors are looking MUCH better (YAY!).

On the other hand, his ferritin was about 70 (normal) 2 weeks ago, then about 1,000 upon admission, and is now over 5,000. We're just seeing lots of strange and inconsistent labs with no clear picture.

The HemOnc (hematology/oncology)doctor are starting to take a more active role as there is increasing suspicion of a bone marrow issue such as a hemophagocytic syndrome. Dr. S from HemOnc ordered some labs yesterday and will be back this evening or tomorrow. Any "next steps" will probably be contingent on the results of those labs.

Noah is really, really, really tired. He can sit and play in bed for a few minutes (and looks pretty good while doing so) but needs to lie down and rest/nap very frequently. He went to bed on time last night (a bit after 9) and slept in until 12:30 this afternoon!

We've been unable to clamp off his g-tube as he has vomiting any time he isn't draining his stomach contents. We're trying again today but gave IV Zofran for nausea right away instead of waiting for him to start throwing up. We'll see where that takes us. It would be great for Noah to stay unhooked - not only would it be an important step toward returning to baseline, but it would be one less tube for him to get tangled in. Right now the little guy is getting (all IV) TPN, lipids, normal saline replacement fluids, D10+K, and 4 IV drugs - 1 via a bag and 3 via syringe pumps. That is a LOT of IV tubing going into one little critter and he is constantly getting tangled up! I sure hope we can cut down on some of those lines before he decides he is ready to get up and get moving.

I'll update when I know more. I kept waiting yesterday for HemOnc to come, thinking I would have more info, but really all he did yesterday was look at Noah and order labs.

Again, thank you for all of your prayers.

Blessings,
Kate

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Comments

Oct. 28, 2009 - Still Praying...

Posted by Jacque http://jacquedixon.com

that you will know what is going on and it will all be balanced.
Be blessed, and praying you all get the rest you need!

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Oct. 28, 2009 - Still praying

Posted by barrynmissy1972

Still praying for him in Jesus' Name!

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Oct. 28, 2009 - Untitled Comment

Posted by Anonymous

Praying for you all!

Hope Noah is better and that you can go home soon.

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Oct. 28, 2009 - Untitled Comment

Posted by Terri

Keeping Noah in prayer for healing! I have a big brood like you all do!!

(((HUGS))) and Prayers!
Terri
www.caringbridge.org/visit/jessegreen

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Oct. 28, 2009 - Untitled Comment

Posted by jewell

thanks for the update.
We are back home, still praying.
LOVE
MQ for the Stams

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Oct. 28, 2009 - Untitled Comment

Posted by Anonymous

Dear Kate ~
May I pray this for you?
~♥~
I have committed to pray three prayers each morning.
The first one is a confession: “God, I’m in desperate need of help this morning.”
The second prayer is, “I pray in Your grace that You would send Your helpers my way.”
The third prayer is, “And I pray that You would give me the humility to receive the help that comes.”

~Paul Tripp [“War of Words,” in The Power of Words and the Wonder of God, pp. 43-44 (my emphasis)], "Praying for Help and Helpers", posted: 16 Oct 2009,
'selected' & 'arranged' from original source: http://feedproxy.google.com/~r/between2worlds/~3/lB1ayRww57E/
~♥~
Holding you in our hearts this day.
grateful for Him who is Rock, Fortress, and Might,
HveHope

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Oct. 28, 2009 - Untitled Comment

Posted by hallfamily8

Continuing to pray.

Love, Dawn
www.caringbridge.org/visit/susannahall

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Oct. 28, 2009 - praying

Posted by Leslie in Alabama

I'm glad some of the numbers are better, but sorry that others are worse. We are continuing to pray for you all, and especially Noah.

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Oct. 28, 2009 - Untitled Comment

Posted by ChristineDaae

Hello,
I am a good friend of Hannah/Laura's here on homeshoolblogger and I have been keeping up with your blog and what's going on with Noah for a while. Just wanted to let you know that you are all in my family's prayers. I'm so glad to hear that Noah's doing better! I hope all of the inconsistency in his labs gets worked out soon.

Many Blessings,
Christine

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Oct. 28, 2009 - praying for Noah

Posted by Janet

I am continuing to pray for Noah and your entire family as you are separated from each other. I ask our Heavenly Father to please guide the doctors in finding what is causing these inconsistent labs on Noah. I ask Him to please continue to comfort and protect him as he fights this latest setback. God Bless.

COLE'S Prayer Team

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Oct. 28, 2009 - still prayin'

Posted by Anonymous

How frustrating it must be to not know exactly what's going on. Regardless, I will praise with you for the good stuff, and continue to pray for everything else! Our God is always faithful.

Blessings!
JRA in CO

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Oct. 28, 2009 - Still praying

Posted by hillarym

I usually don't comment, but thought you need to know our family is praying for yours. My children love to see the pictures of your children at the top of your blog when I check for updates. :) Praying you get some clear answers, direction and healing.

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Oct. 28, 2009 - Untitled Comment

Posted by Jean

Thanks for the update. We continue to lift you all in prayer.

Jean for the rest of the Halls

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Oct. 28, 2009 - Untitled Comment

Posted by Aria

Poor baby. :(

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Oct. 28, 2009 - Praising God for the good progress

Posted by Kathy

Thankful to hear Noah is making progress in some areas. Praying that God divinely gives wisdom to the Drs. as they figure out "enigma" boy! :-)
Hoping you as well got good sleep last night. Praying for God's healing hand to be upon Him in a mighty way. Hoping the rest of your family is staying well on the home front. This has been a week full of crazy things happening to a lot of dear ones I know. Praying the LORD puts a hedge of protection around these dear Christian families as well as our families.
Glad that God is Sovereign and nothing happens that doesn't pass through His loving arms first. Believing to hear more improvement and insights regarding Noah soon. In Christ Alone we find our Hope.

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Oct. 28, 2009 - has dear Noah been screened for MENINGITIS?

Posted by Anonymous

Dear Kate ~

In doing some research (unrelated to Noah), I came across this site that spelled out quite a few similarities between Meningitis & what you've described recently about Noah's condition. Perhaps there is NO correlation, but on the off-chance, I've included the site address so you can check it out yourself. The similarities became more apparent as I looked at each topic within the subject of Meningitis.
grateful for His mercy, HveHope

http://children.webmd.com/vaccines/tc/meningitis-topic-overview?page=2

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Oct. 28, 2009 - Apology

Posted by Joy K.

Kate,

I am so sorry I didn't make it on Sunday. On the way up I became ill with headache/stomach ache/ sore throat and had to stop several times. I decided against coming since I didn't know what was going on with me, and didn't want to pass it along to Noah. I still have hte sore throat even now. I am watching the blog everyday and praying.

Love you all,

Joy

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Oct. 28, 2009 - Still praying....and knowing God is good

Posted by Anonymous

Lord, give the other children wisdom and forbearance to be much more grown up than anyone thinks they should really have to be...and still be able to be kids too -- sometimes :)

Praying Noah can enjoy a DVD when he's awake and resting quietly...so Mama Bear can rest a little too.

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Oct. 29, 2009 - Untitled Comment

Posted by icecastle

Continuing to pray!

God bless,
Deanna

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Oct. 29, 2009 - Untitled Comment

Posted by Anonymous

Continuing to Pray here...... Have Blessed Day !! Jessica in Fl.

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Oct. 29, 2009 - Praying for you

Posted by Joanne Struss

A fellow MOMY from the MOMYS yahoo group let us know about your little, precious Noah and asked us for prayer. I do pray you will find some comfort in knowing that my 6 children and I are praying for you, your family and your little blessing, Noah, morning and night. I know Jesus loves the prayers of his little ones! ") I wish I cold give you a big, big hug from one mother to another! May the God of all peace and comfort grant you His strength as you and your entire family endure this time of uncertainty...may He, (Jesus!), be beside you to lean on, before you to guide you, behind you to protect you, above you to watch over you and below you to carry you. We bless you in the name of Jesus!!! With much love,

Joanne Struss, mommy to 6 in sunny Manitoba

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Oct. 29, 2009 - Noah's Bumps

Posted by Carla

Still praying, Kate. Glad to hear Noah's feeling a little bit better. I know that eases your Mom's heart some.

Wish I could spell you a bit and give you a big 'ole squishy hug!

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Oct. 29, 2009 - Untitled Comment

Posted by Anonymous

I came across your blog from the Coles Foundation website. First of all i wanted to say that Noah and all of your children are beautiful! Second, I wanted to ask if the idea of an Allogenic Bone Marrow Transplant has ever been suggested to you? Since your son has some DNA defects, I wonder if a transplant could be curative, since a person's DNA can be changed through a bone marrow transplant. I don't know much about your son and his condition, so forgive me if this suggestion is off base. Maybe you could ask Noah's doctors if this may be a possible treatment option?

Wanda

www.caringbridge.org/visit/cartercummings

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Oct. 30, 2009 - Untitled Comment

Posted by Anonymous

Praying for you.

Michelle Christianson
Wisconsin
www.colesfoundation.com
C.O.L.E. Prayer Team

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Oct. 30, 2009 - Untitled Comment

Posted by Robin in New Jersey

Praying all is well with your precious son.

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Oct. 30, 2009 - Prayer for Noah !!!

Posted by Anonymous

Father we place Your Word in 1 Peter 2:24 in Noah in Jesus name, By Whose stripes he was healed in Jesus name...We praise You for his total healing in Jesus name !!! Thank You Lord that Your healing will be manifested in his body in Jesus name amen !!! All Glory to You O Lord !!!

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Take a look at our sometimes crazy but always blessed life as we homeschool our eight children, run a homeschool business, and serve God as He leads us. You can also follow our baby Noah as he struggles with some serious health issues - we covet your prayers for him.

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