Monday, December 29, 2008

PICU Day 11

A crummy day...I am emotionally spent. Things continue to look bleaker and no one here knows if we will ever get Noah well enough to make it out of PICU. It all feels quite surreal, and I hope to wake up and discover it was all just a bad nightmare.

Our peripheral IV is still there for now, and our crappy central line is still functional enough to get some TPN in. Noah was also switched back to the CPAP settings today. We are starting very tiny amounts of tube feeds, as Noah's gut may soon be all we have left for nutrition. Those are all the good things.

But Noah is in a bad place right now and we are backed up against a wall, with no good way out of here. He continues to ooze blood, (although it is slowing once again) and needed another transfusion this morning. With line access being such a huge issue, we had a team meeting this morning. Unfortunately, with the holidays, many of the people who know Noah are away, but we had to put some sort of plan in place. It was time to discuss end of life plans, and what heroic measures we want done to save Noah's life. We were asked if perhaps this is the time to stop things, make Noah comfortable and let him go. The major reason being that Noah has no good line access left. We knew eventually this would become a life/death issue for him. I just never thought it would be now. But we did a floroscopy study this afternoon, and discovered his major vessels on the right side are all either clotted or very scarred, as well as his femoral veins. The line he has right now is right up against major scar tissue, which is why it is flowing backwards. Unfortunately, the left side is still an unknown. It may be a possibility according to ultrasound yesterday, but his circulation paths are now so changed that there is no way to know without taking him to the OR.

After many discussions throughout the day, thankfully, the surgeon has left the decisions up to us, willing to do whatever we decide. We have agreed to send him to the OR tomorrow afternoon to attempt one last line insertion. I am not done fighting for him yet, and we think this is his best chance at getting over this major hurdle so he can be assessed by Toronto. We have said no to the more heroic measures of a thoracotomy for line access (an incision directly into the chest cavity) as this is a highly painful procedure, with major post op lung complications, and if survived, can lead to a lifetime of pain issues. But even this regular line insertion is filled with risks as well and there is no way to know if it will be successful. There are just no good answers here, and getting a line in will not get us out of the woods, it may only lead us further in, but I am praying that it will buy us more time to figure out a better plan. Praying for another miracle...

I am unable to look farther than one day at a time right now...to think further than that is completely overwhelming. One day at a time...

Thank you friends for the goodies you brought by today. You made a miserable birthday a little bit brighter.

43 comments:

Carol said...

I am so sorry things have not gone well today. I will be praying so hard for all of you. May God keep Noah in his loving arms and may all of you feel His comfort, strength and guidance.

Carol ( aka oklamomof4boys)

laura.h said...

Oh Nichole,
We love you and wish you a happy birthday. I'll be praying for you tomorrow, that God would be able to give you the wisdom you need to make these tough decisions on Noah's behalf.
My hearts all emotional tonight as I rejoice with my brother Ryan on the birth of his new daughter at the same hospital where you and Noah are. But my hearts also so sad for Noah...I wish I could be there and see you both.
Laura

The Kincaids said...

Love and prayers from Seattle, Washington. Our Father in Heaven is so full of love for you and for Noah. He is so gracious. So gentle. So full of mercy. I pray tonight that you feel His peace and His presence like a warm blanket all over you. I pray for sleep for you and Brad and Noah. Our hearts go out to you. Hang in there. You are being such an amazing example to all of us. Love,
Kerri (used to be Martens) Kincaid

Anonymous said...

I just want you to again be assured that many are praying for you and Noah and the rest of the family, especially as you reach a time of making major decisions on behalf of Noah!
Remember that we serve a God who is full of compassion and love. My prayer is that as you come to these decisions that you would feel His love surrounding you and guiding you.
Rest deep into the heart of a Father, who cares for you just as you care for Noah. Know that He IS IN CONTROL!
Allow the Lord to walk you though this time and be assured everyone is standing along side your family no matter the outcome!

Praying for you all....

Anonymous said...

Happy Birthday Nichole,
I pray for you and Brad. I pray that you feel God's hands holding you. I pray that you may feel his peace. I want to pray words that I can't express, groanings only God can hear.
I was glad to visit Noah for a short time on Friday but I ached for you both when I saw him struggle for each breath. You are both amazing parents and you have a " David" in Noah. I love you all.
Auntie Bertha

Anonymous said...

Love and prayers being sent to Noah and your family.
I pray that you have a good outcome from tomorrow and that whatever the best plan for Noah to go forward from this bleak place he finds himself in is possible.
My heart breaks for you all
Mandy

Anonymous said...

So sad to hear Noah is doing this poorly and my heart goes out to your entire family.
I am hoping, wishing and praying for things to take a turn for the better.
Hang in there Nichole.
Linda

Amber said...

i have been following your blog for a long time, especially keeping up to date this christmas. i don't have any words to say, except that i am praying for and will continue to pray for noah & the rest of your family. he is such a special little guy.

Pete and Brenda said...

Wow, Brad and Nicole, you are such strong people! Noah is so fortunate to have such great parents looking out for him. We have been praying so very hard for Noah and also for each of you. God is a big God, and He can do big things, do not lose hope. Keep the faith and keep looking to Him. We will pray like never before! May you feel the arms of Jesus wrapped around you and your precious bundle.

Love and prayers,
Pete and Brenda Wolf

Anonymous said...

Prayers for healing, strength, wisdom and peace being sent your way.

kimmylaj said...

still praying

Matthew said...

The McIntosh's are praying for your family. Knowing the miracle of prayer in our own special needs children, we offer up hope and peace to your family in this time of struggle. We pray our heavenly father will be with you each step of the way and that his angel's will guide the doctor's in all of their decisions. Peace be with you and your family!

Matthew and Naomi (aka macntosh)

Anonymous said...

Praying that today would be a better day & knowing that God is the greatest physician out there!
Val Penner

Maroo said...

I am so sorry! I am sorry for your birthday being so awful. And Christmas.

I hope you guys will get some answers today.

We are praying fervently for you guys. I am praying specifically for peace.

Jamie said...

I'll be praying for you today.

Anonymous said...

We are shedding tears for you! We will continue to pray for all of you and the decisions you need to make.

Wendy & Darcy

Grandma daisy said...

Psm 121-- Our strength comes from the Lord.---may He continue to give you His strength as you watch Noah struggle. We are praying for you and that Noah will be comfortable during his surgery. May you feel God's Love holding you up through all this.
Emmy and Dave

Anonymous said...

Sending you lots of hugs from Charlotte, NC. We're praying for Noah Bean. Praying for answers and a powerful miracle. God is still in control. May HE continue to hold you and keep you all strong.

Love you guys bunches!

~Rissa and family

James said...

Jesus I pray for Noah and Nicole. Be with them today, giving them peace. Hold little Noha close, allow him to feel your presence and be strengthened from it. Fill their room with love and light, Jesus I pray.

Jaime, following for a long time from BC

Anonymous said...

Words seem so inadequate when I read of all that you are going through. I continue to cling to that promises of God that He will never leave us or forsake us. My prayer is that you will experience His prseence and that He will give you wisdom as you make these desicisions. Your dependance on God has been a testimony to me. God's peace be with you. Our prayers here at La Salle Community Felllowship continue...

The Keowns said...

always praying. Praying for peace and guidance as well as continued comfort and strength.

crystal_crtr2 said...

Nichole I am praying for your little guy that he will pull through this and give you a great big smile.

Rosalee (Buttercupladies) said...

Dear Nichole,
My heart breaks for sweet Noah and your family. I will be praying for you and be asking for the best outcome. I know all the Buttercups are praying for you too.
My thoughts are with you at this terrible time.
Rosalee in Montreal

Kathy said...

You're on my mind and my heart frequently today. I will continue praying for you, especially today.

Anonymous said...

Praying for you all

Jaylee said...

I have followed your blog for awhile now..when I read this post my heart breaks for little Noah and your entire family. You are an amazing and strong woman who seems to somehow always be able to hold it all together..Praying that everything goes smoothly today..

Leanne said...

I'm so sorry to read this news. I'm praying for all of you, for the decisions that have been made, and have yet to be made. How exhausting. I pray for strength and peace.

Kim said...

Nichole, Brad, Kailyn, Joshua and Noah - I'm praying for all of you today. Praying for a peace that only comes through Jesus. May you feel His presence with you, His strong arms holding you up in this very difficult time. I'm praying for wisdom for the doctors as they too care for Noah. Blessings on your family today...Love you Bean!

Anonymous said...

Nichole, thought you might appreciate this.
God bless your family and Noah.
Before I was a Mom I never tripped over toys or forgot words to a
lullaby.
I didn't worry whether or not my plants were poisonous.
I never thought about immunizations.
Before I was a Mom - I had never been puked on.
Pooped on.
Chewed on.
Peed on.
I had complete control of my mind and my thoughts.
I slept all night.
Before I was a Mom I never held down a screaming child so doctors
could do tests.
Or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night watching a baby sleep.
Before I was a Mom I never held a sleeping baby just because I didn't
want to put them down.
I never felt my heart break into a million pieces when I couldn't stop
the hurt.
I never knew that something so small could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a
Mom.
Before I was a Mom - I didn't know the feeling of having my heart
outside my body.
I didn't know how special it could feel to feed a hungry baby.
I didn't know that bond between a mother and her child.
I didn't know that something so small could make me feel so important
and happy.
Before I was a Mom - I had never gotten up in the middle of the night
every 10 minutes to make sure all was okay.
I had never known the warmth, the joy, the love, the heartache, the
wonderment or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much, before I was a Mom.

Anonymous said...

Brad, Nichole, Josh, Kailyn and Noah.."Fear not, for I have redeemed you, I have called you by name, you are mine. When you pass through the waters, I will be with you. amd when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned, the flames will not set you ablaze. For I am the Lord your God, the Hold one of Israel, your Savior. I give Egypt for your ransom, Cush and Seba in your stead. Since you are precious and honored in my sight, and because I love you...Do not be afraid, for I AM WITH YOU..Isaiah 43:1-5 Blessings to all of you

Anonymous said...

Brad, Nichole, Josh, Kailyn and Noah.."Fear not, for I have redeemed you, I have called you by name, you are mine. When you pass through the waters, I will be with you. amd when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned, the flames will not set you ablaze. For I am the Lord your God, the Hold one of Israel, your Savior. I give Egypt for your ransom, Cush and Seba in your stead. Since you are precious and honored in my sight, and because I love you...Do not be afraid, for I AM WITH YOU..Isaiah 43:1-5 Blessings to all of you

Christie Tuttosi said...

We are praying...it is so hard to give control over to God, but I know He knows what is best for Noah, and for you all. I pray Noah is not in any pain, and that God allows you some peace during these difficult moments.

Christie Tuttosi said...

We are praying...it is so hard to give control over to God, but I know He knows what is best for Noah, and for you all. I pray Noah is not in any pain, and that God allows you some peace during these difficult moments.

Christy said...

Just wanted to let you know that you're in my thoughts and prayers.

Christy (aka camarks/disboards)

Tim and Kelsie-Lynn said...

We are praying for you all. We believe in Noah!

Dianne said...

praying

Janelle said...

haven't stopped thinking about Noah today. and my daughter Kamryn and I just stopped to pray for him again. you are being covered in prayer, and though many of us can't imagine how heavy your heart is right now, we can pray peace & understanding & strength over you. and we WILL. :)
be strong Noah! :) you are a very brave little boy, and we are all so proud of you!

Andrea said...

Keep your head up. My families thoughts and prayers are with you.

Anonymous said...

My heart goes out to you & my prayers are with you.

Wenona said...

Hi. I follow Jaime's blog and have followed your blog for a while without commenting, but always praying. I just want to let you know that there are so many people praying for your very special little boy and we won't stop! God bless you!

Tara said...

My thoughts and prayers are with your family during this very difficult time. I'm so sorry for all that poor little Noah has had to go through.

God Bless

Anonymous said...

So sorry - I hope that you feel God's presence as he walks beside you (and carries you when things feel bleak and you are at a loss). Knowing today will have been difficult, I pray for you, your family and Noah.
Myrna

Amy (mom2lilnick) said...

Continued prayers for Noah.