Monday, March 26, 2007

Weary along the way...

Have you ever run a marathon? You start out strong, your outlook – optimistic. Steady strides & fixed focus move you forward towards your goal. You may even run for quite a while, but eventually, fatigue begins to set in. Often times, you just mentally regroup, perhaps even stopping for a water break. On again you run.
And then it hits. That point where you just don’t think you can go on any more. Muscles throbbing & breath escaping you, the road ahead somehow seems to grow longer & steeper before your very eyes. In your mind, you know that if you remain steadfast, pushing through the pain towards the finish line, that second wind will come & you’ll find the strength to make it through to the end. But you honestly don’t know if you have the strength to take another step, let alone another stride. Everything in you longs to give up as the strain of moving forward seems more than you can bear. Will this road ever end?

Such has been this past week. For whatever reason, this fourth week in Chapel Hill seemed to carry with it a heavy blow. Each day brought new concerns & setbacks to our boy’s progress in recovery, feeling much like one step forward & two steps back.

For several days, Isaac’s oxygen saturations fluxed to concerning lows. He also experienced increased volume & viscosity in his secretions. These conditions made breathing more difficult with Isaac often gagging on the mucus in his throat & lungs. Thus his ventilator settings needed to be adjusted to provide greater assistance to Isaac in breathing. This will most likely delay extubation further & possibly increase his need for the trach. This however is a catch-22 as future open-heart procedures could be affected by having the trach in place. So it’s now a matter of determining the lesser of two evils.

Increased fluid in his lungs, a low-grade fever yesterday, & the finding of bacteria from his ET tube culture indicate that Isaac has the early stages of pneumonia. Doctors have begun a 14-day treatment of Vancomycin & Zocin for this as cultures have confirmed the presence of staph in his lungs.

Following the Broviac operation, Isaac has not tolerated the breast milk feeds, causing him to go back on IV nutrition. He repeatedly spit up for a few days, a result of his stomach being unsettled & gagging on mucus that was caught between the ET tube & his throat. They have just turned his breast milk feeds back on tonight w/an ND tube now in place. This tube bypasses the stomach so that food can go directly into the digestive tract, thus avoiding the nausea spells. Once he shows consistent tolerance to the feeds, the tube will gradually be worked back towards the stomach. The tube may need to be reinserted by radiology under the assistance of fluoroscopy, as it seems to be coiling in his stomach & thus not passing into the bowel.

We discovered that Isaac has an ingeuinous hernia on Friday, which will most likely require a surgical repair. With more critical issues pressing right now, this will be put on the back burner until he nears discharge. So for now, we’ll just keep a vigilant watch to see if it worsens.

Over the past week, Isaac’s blood glucose levels have been unusually low. Several times, his TPM (IV nutrition) has been adjusted to compensate for this drop in sugars, but to no avail. The endocrinology team has closely followed this trend & are concerned that Issac may have hyperinsulinism, a condition where the pancreas exerts too much insulin. Diabetes is where the body has a surplus of glucose & not enough insulin. Hyperinsulinism is the inverse. Another possibility is the presence of insulinoma (an insulin-secreting mass) in Isaac’s pancreas. He will be taken down for an octreotide scan today to look for a mass.

Doctors are also concerned with Isaac’s kidneys as his BUN levels are elevated, indicating that his vessels are dehydrated. However, in spite of the administration of Lasix (a diuretic), Isaac is retaining an exorbitant amount of fluid in third space (tissues). So our boy is carrying a great deal of fluid & yet lacking what is needed in his vessels. Several of the medications he is currently on have renal effects, so doctors are working out a balancing act between them all to give Isaac what he needs right now to his heart & lungs without causing damage to his kidneys.

This road holds many twists & turns. Most recently, uphill in the pouring rain. We don’t know what lies just beyond the next bend. We don’t know how steep this hill may be nor the distance of our journey. But as our muscles strain for the next stride & breath seems just out of reach, we press on for love of our little boy & the knowledge that God has not forsaken us. Our hearts ache for home with sweet Isaac in our arms. God provides us strength for each day & we remain resolved to run on for our little boy as he continues to fight towards recovery. The occasional ray of light breaks through the clouds, reminding us of the glorious sun shining just beyond the grey. And so we continue on, waiting for the second wind to come.

31 comments:

Anonymous said...

Do not give up hope.
God knows what will happen next. No other creature on this planet has that power. Should whom other than him should we put our trust in? I can't say I know how you feel...but God can. He died on a tree for your little baby boy. It may seem now that you can't go on..but just keep your eyes on God, he will give you the strength to go on that you can't get from anything or anyone else. Keep positive and keep up the hope. We love you guys oooo soooo much.
delea.

Anonymous said...

We are praying for Isaac. We will pray that as each day passes by the hurdles will soon dissapear and Isaac will make better progress. We pray that you and Jordan will stay strong. God is in control of this. No matter what lies ahead, God has an awesome plan for Isaac!

With love & prayers,

Bryant and Hilary

Anonymous said...

We are joining you in your prayer for strength. We love you.

Anonymous said...

Isaiah 40: 28-31
"Do you not know? HAve you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary and young men stumble and fall; but (listen to this promise) THOSE WHO HOPE IN THE LORD WILL RENEW THEIR STRENGTH. THEY WILL SOAR ON WINGS LIKE EAGLES; THEY WILL RUN AND NOT GROW WEARY, THEY WILL WALK AND NOT BE FAINT."
God, right now I stand in the gap for the Leino family and claim that promise. Lord, lift them up on wings like eagles. Give them your peace, your strenth, and your endurance. We give you praise for the work you have already done in their lives. Father, we know you are the Ultimate Physician and we ask you to continue your work in little Isaac. Touch him with your mighty hand! You are so awesome and we praise you for who you are. In Jesus' name! Amen!!!!

Anonymous said...

As the song goes, "Strength will rise as we wait upon the Lord..." God is using your family like none I have ever known. The love and admiration that we have for you all cannot be measured!! It seems as though when you're in a valley, one ray of sunlight leads to another and then another and before you know it, the sun is shining so bright everything is clear once again. That day is coming..hang on and stay fixed on God, he will deliver. Isaac's purpose on this earth is far from over...he has so much more to teach us and others for years to come. God is equipping him with a testimony like none other!! We love you guys so much and are praying for you all. Ok Isaac, rest time is over...time to get back to fighting!! Psalm 105:4
Look to the LORD and his strength; seek his face always. We love you, Leino's:-)
Jones Family (AEBM)

Anonymous said...

I can't even begin to imagine what you and Jordan have been going through. I will continue to pray for strength for you to get through these hard days. And remember that it's ok to cry and be upset. God understands, and he can take it. If you ever need to talk to someone and vent, or just talk about how you are feeling, you can always call me; I'd be more than willing to listen. You are an amazing woman of God, and I know that you have the strength and faith to push through until the end.

Taneha

Anonymous said...

I have had a few friends run marathons and I know the "wall" in which you are referring to. The imaginary wall you hit and you think to yourself, "This race has got to be almost over."

From their experiences I can tell you the second wind does come. Someone in the crowd shouts your name. The name on your jersey that you put there so others would know who you are and cheer you on. Or. . . they shout your number. Not really knowing who you are but knowing that what you are doing is an example and encouragement to them as they cheer from the sideline.

"Go Leinos!!!. . . You can do it! You're doing a GREAT job! Keep it up! Come on Leinos, you can do it. You're almost there!"

Anonymous said...

I'll Praise you in this storm, and I will lift my hands, for you are who you are, no matter where I am, and every tear I've cried you hold in your hand, you never left my side and tho my heart is torn, I will praise you in this storm. I lift my eyes unto the hills where does my help come from? My help comes from, The Lord the maker of heaven and earth! Revelation 7:17.
We Love you, you are not alone, it might feel like it some times, but in spirit, we are always with you and asking God to give favor and blessings on your family, do not let fear, the opposite of Faith get you down, rebuke it, in Jesus Name, I rebuke fear, worry, weakness and sickness, in Jesus Name be whole Leino Family.

Anonymous said...

Lord Let your light, Light of your face shine on us, that we may have light to find our way in the darkest night.

Mike,Jane,Mitch,Matt&Marc Figs said...

"Hear my cry, oh LORD. Attend unto my prayer. From the ends of the Earth will I cry out to thee. For when my heart is overwhelmed,lead me to the ROCK that is higher than I, so much higher than I. For thou hast been a shelter unto me, a high tower against my enemy. When my heart is overwhelmed please lead me to the ROCK that is higher than I, so much higher than I." We declare a special anointing over the Leino family. We declare a supernatural anointing of GODS wisdom over each doctor, nurse and person that is involved in the slightest with Isaac's care. We declare that GOD takes complete control of their minds, thoughts and hands as they care for your child LORD, Isaac. Your a powerful LORD, the same yesterday, today and tomorrow. You never change. You are the GOD who healed the blind, healed the leper, made the mute sing and the lame walk. There is nothing impossible for you. The Fig Fam is in accord with your word that is in Is.55:11 that this word being confessed this night will not return back void but will accomplish what it is sent out to do and it shall prosper. Amen.

Christal said...

Matthew 11:28. Come all who are weary and the heavy burdened...

I just pray right now God that you give Patience and Jordan the strength to run the second mile! There was no mistake when You asked them to take upon this task. There is no mistake in your unfailing love and strength. You know the Leino's needs God, and nothing that has occured has been a suprise to You. You knitted Issac in the womb and he is fearfully and wonderfully made, you knew the hurdles he would have to overcome. Guide Patience and Jordan with your undying peace and guidance. Give them a heart and mind that never doubts but always hopes in you God. All these things we ask in Your name!

We love you guys! And until Issac comes home your daily being lifted up in prayers.

Christal

Carlyn said...

The verse has already been quoted, but I wanted to give you the song...

I was sure by now
God You would have reached down
And wiped our tears away
And stepped in and saved the day
Once again, I say Amen, and it is still raining

As the thunder rolls
I barely hear you whisper through the rain
I'm with you
As your mercy falls
I raise my hands and praise the God who gives
And takes away

I'll Praise you in this storm
And I will lift my hands
You are who you are
No matter where I am
And every tear I've cried
You hold in your hand
You never left my side
And though my heart is torn
I will Praise You in this storm

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find you

I lift my eyes into the hills
Where does my help come from
My help comes from the Lord
The maker of heaven and earth


Casting Crowns wrote and recorded this song for a little girl and her family who were struggling through an illness. Even though this song was not released during my journey through cancer, I sang this song in my heart the entire journey.

Even though the road is long, and your muscles are hurting, and your heart is aching, God is still in control. He will carry all three of you through the toughest parts of your journey.

All 3 of us pray for the 3 of you every morning and every night. Makayla prays for "baby Issssca" and her Aunt Patience and Uncle Jordan several times throughout each day. We love you all!

Carlyn (Benjamin & Makayla too!)

Anonymous said...

You are running with the giants, Abraham himself is walking the mile with you, he is pulling for you, for your Issac. He is telling you that God is testing your faithfulness to him, dont give up, the lamb to sacrifice has already come, and an angel is there to tell you to "fear not."

Anonymous said...

We fall down, we get up, we fall down, we get up, we fall down, we get up, we fall down, we get up.......and the Saints are just the sinners who fall down..... and GET UP!
I pray that God gives you the strength to get up.

Anonymous said...

Music seems to be the theam here, both of you are angels of music and worship, use your tools to help yourself thru this time. We pray for your boy and that he will be strong and that God will listen to your heart. Lord knows all our hopes and Lord you know all our fears, words can not express the love we feel, but we long for you to hear. Listen to our hearts oh Lord please listen, Hear our spirits sing, a song of praise from those you have redeemed, we will use the words we know to tell you what an awesome God you are, but words are not enough to tell you of our love so listen to our hearts!

Anonymous said...

God will never give us more than we can handle, you and your son, must be very strong! The strength of Jesus may it keep you all strong!

David and Erika said...

"At that time Jesus said, "I praise you, Father, Lord of heaven and earth, because you have hidden these things from the wise and learned, and revealed them to little children. Yes, Father, for this was your good pleasure.

"All things have been committed to me by my Father. No one knows the Son except the Father, and no one knows the Father except the Son and those to whom the Son chooses to reveal him.

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."

We know that you will not give up!

We are here to build you back up and to encourage and uplift you. Please continue to use us so that we may pour into you!

With Much Love and Many Blessings,

Henge said...

Hi honey,

I know that it has been awhile, but i've been keeping an eye on you and your gorgeous family and i just wanted to write quickly and let you know that i am thinking about you and that it's ok to be tired. You are an incredible woman and mother and Isaac is lucky to have you.

Best always

Anonymous said...

Is. 45:3
I will give you the treasures of darkness, riches stored in secret places, so that you may know that I am the Lord, the God of Israel, who summons you by name.

He holds you close in the darkness too. We lift you up to Him. With much love.

anita said...

all has been said - more is being prayed... Love you...

Mary said...

Praying as I think often of you! In these moments when there is only one set of footprints in the sand, remember that Jesus is carrying you along. He will NEVER leave you. I know that at times faith can grow weary...and in those times, it is our responsibility as your brother's and sister's to aleviate the burden. Rest and know that your strength will be renewed as we pray not only for Isaac, but for you and Jordan too! Isaiah 40:31 is my prayer for you this day!

Anonymous said...

My dear ones,
I don't know you well, basically through Chris. Still, in my heart, I am shrinking you both to little babies and rocking you, wishing to soothe it all away. Prayers are constant.

" . . . But when the injured becomes the fallen,
it falls, not upon dust, but upon the Great Hand of the Tender Physician . . . "

Love,
Kathy Hughes

Anonymous said...

Psalm 66
God NEVER loses control of ANY situation! To God be the glory.

Anonymous said...

Thank you for your honesty. We now know exactly how to pray. Keep the faith. The Lord will come through as He has many many times for the three of you.

Anonymous said...

Dear Baby Leino,
You stay encouraged! Remember this one thing NOTHING changes God's word. He is always the same and He never changes. His promises to His people are yes and amen. He can not lie. Get hold of His promises in the word and stand like never before. God is a miracle worker. Before this earth was formed He knew this baby! He has carried him this far and will carry him even further. Nothing changes God's word. He is still in control and He gave us a Savior to call on. Use the power in the name and blood of Jesus! Get mad with the devil!!! God bless you mom and dad. I will be praying for you all!! angie

Jeff Kapusta said...

Jordan and Patience,

I'm praying for you guys. Please don't hesistate to let me know if Lifepoint can do anything for you guys. We love you.

Anonymous said...

Patience and Jordan:
There are people praying all over the country. Even here in Arnold, MD. Take it one day at a time. God is faithful-- and holds little Isaac in His gentle and very big hands. Hang in there. Our family is praying for you.
Love, Julie Coleman

Anonymous said...

Hey Jordan and Patience,

I know this has got to be tough and you guys have remained so strong. I'm sort of scared to write anything because I'm afraid I won't say the "right" thing. I want to agree with the person who wrote about crying and crying out to God. It is okay to cry and you probably need to cry. I can't imagine having my baby at the hospital for a whole month wondering what will be next. I know you have faith in our Almighty God and I know his ways are higher than our ways, but sometimes it still hurts. I know in the midst of this trial you wonder when it will end, but when you look back on this a few years from now it will be so tiny. Just like our days on this earth are merely a blink compared to the days in eternity yet to come.

Remember God is the one who knit Isaac together in your womb. All his works are wonderful and each of our days were written in his book before one of them came to be. As you named him, remember he is God's. God loves him even more than you do.

God has plans for you, plans to prosper you and not to harm you. Plans for a hope and a future.

You guys are awesome!! A blessing to our church and we love you bunches. We are praying for you and little Isaac.

Love, Faith-Renee

Anonymous said...

There are no words to tell you how much love we feel for your family. It is hard to see your child go thru so much. I know from my own experience when my 36 yr old was 7 weeks old and we were told he would not make it. But GOD had other plans and today he has a wonderful wife and two precious little girls. The oldest one just had her hair cut so the children with cancer could have hair and she is only 5 years old. She told me Jesus wanted people to do this. What a great gift and you have that same great gift in your precious baby boy. Breath deep honey, GOD will provide the strength and breath for you to continue running. There are so many churches in New York praying for your little one. I told Jordan about them today. We love your little family greatly and continue to pray for you every day.

Carol C.

Anonymous said...

We've never met, but I am following Isaac's progress through the blog and praying for all of you. I am just awestruck at your strength and faith, and your selflessness in sharing your story. Thank you for reminding me of something I've strayed away from over the past few years--God's incredible mercy and love. I pray that this latest hurdle is quickly cleared and that your beautiful boy will make excellent progress.

Crystal Nichols & family said...

Psalm 29:11, "The LORD gives strength to his people; the LORD blesses his people with peace."

Hang on to the Master's Hands. I pray that the Lord will keep you and your family strong, uplifted, and encouraged. May the Great Physician touch baby Isaac and remove all infection and heal every infirmity that is in his body. We don't know why God is allowing all of this, but we do know Who is in control. He sees the big picture when we only see a small piece to the puzzle. You are in our thoughts and prayers, and we love you!

1 Peter 5:10 says, "And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast."

Psalm 73:26, "My flesh and my heart may fail, but God is the strength of my heart and my portion forever."