Thursday, March 3, 2011

Benjamin isn't doing as good again.

Yesterday afternoon they had to switch out his oscillating ventilator for another one since it was making a high squeaky noise. So they did that and his saturations dropped and they had to turn up his O2 to 80%. He had been at 40%. Usually he recovers within a couple hours and they can wean him back down to 40%. Last night they couldn't. All though the night they had him at about 70-80% and were trying to wean him down. But it didn't work. His saturations apparently dropped to the low 70's (for him right now they are aiming for greater than 85). Also yesterday when I went to put my hand on his back, he shrugged it off. So I put it on his arm but he shrugged that off too as if to tell me to just leave him alone. He doesn't like to be touched at all right now and that is hard for me.

This morning when we came in he was still at 65% O2. That's when I knew for sure things were going downhill. When rounds came to Benjamin we decided to join in this time. So we listened to them and then the doctor told us he'd like to talk to us in the conference room. Uh, oh, I thought, they never take you in there for good news. So the doctor talked to us. He said that since they took him off ECMO on February 24, he was doing good over the weekend but that since yesterday he has started going downhill. They are having a hard time keeping him oxygenated even when they change the pressures on the oscillator. He said that there is a great possibility he might not make it through and a great possibility he will. Right now in my heart I feel like he is not going to make it. I haven't felt like that for a bit since he seemed to be getting progressively better until yesterday. But now I feel like that again. They are going to aggressively dry him out by giving him diuretics to see if this will help him. But that comes with its risks too as they want him quite dried out but if they go too far it could damage his kidneys and he would have to go back on CRT (kidney dialysis machine). They basically don't know if it is the extra fluid that he has on board or if he just can’t get over RSV. They did another RSV test again last night to see if he still has it and yes, he does. He also has pseudomonas which is an infection in his ventilator tube (ETT). So it is basically just a waiting game to see if he will get better.

Right now we are feeling very down as it’s hard to know what to think. Our plan yesterday was to come home for the weekend as it is Devon’s 1st birthday and that Gary would go back to work on Monday. But now we are not sure what the weekend holds. I have very confusing emotions right now as I feel like our other children need us too but don’t know what is going to happen this weekend with Benjamin. We are planning to wait until closer to the weekend to decide as that will tell us more about Benjamin’s condition and whether we should even leave here. Please pray for strength for us right now as there is no way we can get through these next couple days in our own strength. We don’t really know what the future holds and find that difficult even though we know that God holds the future. I find the yo-yoing back & forth very difficult. I want Benjamin to live but know that if that is not God’s plan then I want him to go quickly so he doesn’t have to suffer. Please pray for Benjamin as well that he would have peace and be comfortable.


GrampaZ said...

And He said to me, "My grace is sufficient for you, for My strength is made perfect in weakness." 2 Corinthians 12:9a. People respond to pain and suffering in different ways, depending on how they view God. Those who know God personally turn toward God in painful moments because they know He offers comfort, security, and a ready refuge. Turning to Him in faith today will give you reason to turn to Him for comfort tomorrow. Our afflictions prepare us for receiving the grace of God. John Calvin

Evelyn van Egdom said...

My heart is breaking for you as I read this post. May you continue to feel God's arms around you as He carries you through this. {HUGS} Ev

Anonymous said...

Oh Gary and Greta
My heart breaks for you, may God keep his comforting arms tightly around you. Praying for peace and strength.
Love Kath

Martin and Wieska said...

Our hearts go out to you. We continue to pray often for you all.

Ruth said...

Dear Gary & Greta,
My heart breaks for you... I cannot imagine what you are all going through.
May God's promise in Isaiah 41:10 be a comfort for you today and in the days ahead. Praying for strength, peace and courage for both of you. Praying for peace for precious Benjamin. "Fear not, for I am with you; be not dismayed for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand." Is.41:10

Love Ruth

Tim and Alice said...

{HUGS} Greta & Gary
I cannot imagine what you are feeling...we are praying unceasingly, through better days and the not so good days.

Kathy VanMuyen said...

Oh Gary & Greta,
Our hearts too are breaking for you. Praying that God will give you strength and peace and may you find refuge in His arms.

What a Friend we have in Jesus,
All our sins and griefs to bear!
What a privilege to carry
Everything to God in prayer!
O what peace we often forfeit,
O what needless pain we bear,
All because we do not carry
Everything to God in prayer!

Have we trials and temptations?
Is there trouble anywhere?
We should never be discouraged,
Take it to the Lord in prayer.
Can we find a friend so faithful
Who will all our sorrows share?
Jesus knows our every weakness,
Take it to the Lord in prayer.

Are we weak and heavy laden,
Cumbered with a load of care?
Precious Savior, still our Refuge--
Take it to the Lord in prayer.
Do thy friends despise, forsake thee?
Take it to the Lord in prayer;
In His arms He'll take and shield thee,
Thou will find a solace there.

Anonymous said...

We are very sorry to hear this news .It seems that he was going into the right direction. But we know that the Lord is in control also of Benjamin's life. And our prayer is that HE will supply all our needs even when there is a grave concern at this moment .May the Lord be our refuge in these dark hours and give us strength to bear our burdens . Also we ask for comfort and peace for our grandchild and that he may receive healing in his body. Our thoughts and prayers are with you .Love Dad and ELEANORE.

Eileen said...

May our love and prayers help all of you. God will always be at your side. Never far from our thoughts.
Extra hugs and love, Eileen and Doug Gunn

Betty said...

I didn't expect a post like this today. :( The up and down is very hard... I can understand how exhausting that must be for you. We will continue to pray for strength for you and Gary, and for God to be near to Benjamin as he fights.

Anonymous said...

Still praying for you all. Greta, I know you don't know us that well, but if you need/want me to stay with Benjamin while you get away for a bit, I would be happy to help...M Pronk Family

Anonymous said...

I keep you in my prayers and know that God is with you. My heart breaks for you. Benjamin and your family remain in my thoughts and prayers. Jodie

rachel said...

We are still praying and will pray more... That you may be surrounded by GODs comfort in these trials, that He will give you the strength you need, and pull you ever closer to Him. That there would be healing if He plans that, and acceptance in whatever His plans are. He loves His children no matter how it may look to us here on earth. And I pray too that little Benjamine isn't in too much pain. And that God has His arms around all of you.
"Come unto ME all you who are weary and heavey laden and I will give you rest." Know that many are praying and care. Hugs,
The Vanderknyffs

Anonymous said...

Oh those ups and downs are SO hard...our thoughts and prayers are with you! Even though we don't know what the outcome will be for Benjamin, we can be SURE that HE will never leave you or forsake you. Today we remember the one year anniversary of when we first brought Ryan to the hospital, and that also brings to mind his favorite song, Trust and Obey.

When we walk with the Lord,
In the light of His Word,
What a glory He sheds on our way!
While we do His good Will,
He abides with us still, and
with all who will trust and obey.

We pray that you will feel His comforting arms around you and carrying you through this very difficult and trying time.
Love from the DeGroots

carley said...

i stumbled along your blog a few weeks ago. my son was on ECMO in 08 and he wasn't supposed to survive. it was 40 days in the ICU and ups and downs. i still have some PTSD from that and one night I googled 'ecmo' on blogs and i found you and Benjamin. every day i check on you guys and think about you so often. i know exactly how you feel. my son did survive and i pray that Benjamin does as well. one day i would love to meet you and your family and we can talk about our miracles: Henry and Benjamin. there is a song i sing to my boys at night and lately i have been singing it for your Benjamin as well. it's called ''Godspeed'' by the Dixie Chicks. if you ever have a free second to google it, you will likely find it fitting. may God keep you in His loving arms until you can hold Benjamin once again. God Bless.

Carley Arelt

Anonymous said...

My heart aches for you as Parents and for Sweet Benjamin.
I Pray God will give You and Gary Strength, Wisdom, Courage and Peace during this very difficult time.
I Pray God will wrap his arms around SWEET Benjamin and give him Comfort and Peace.

Hugs to All,

Barb Delviken

Anonymous said...

We've been following your blog Greta. Thank you for keeping us informed. We are all praying for Benjamin and your family. Our Benj prays for your Benjamin at bedtime often. Kids praying for kids is soooo special. We pray Benjamin feels all the love and prayers each day through the peace of the Holy Spirit. May God uphold you day by day as you love your little man through this.
Debbie Luteyn

Anonymous said...

I can't imagine what you are going through. Our hearts are heavy when we read the blog and think of all the trails that you are going through. Our hope and prayer is that you have the strength today and in the future. Praying always.

Anonymous said...

Praying for peace for you and your entire family. Also for strength and calmness for you to carry on. Our kids ask every day how the 'little boy' is doing, so thanks for your faithful updates. Lori Van Beek