I can't begin to put into words the frustration that fills my soul this evening, so I will keep this entry very brief. Connor had an eventful afternoon in the interventional radiology department. He went in for the GI scope and they found a pallop (sp?) on his intestine. The took about 5 samples and they are doing a biopsy. There is no explanation of what or why!!!!!! They also advanced his G-tube into the small intestine in hopes that this will help the unidentified reflux. One of his past surgeons came in to speak with me and it does look like the Nissen procedure has failed by 50%. They can possibly go in and fix it, but it would be a much more difficult surgery since his lungs are so sick and he doesn't seem to be getting any better. All of that to say really nothing to tell you the truth. I feel like we are running in circles.
When Connor came back from IR he still had the breathing tube in and for whatever reason, he started having a difficult time and the respitory therapist, who wasn't paying very good attention I might add, and the doctor had to bag him with manual oxygen for a few minutes. He was completely blue and not breathing on his own. It seems like every day I go crazy with worry and I wonder if life will ever get better for us. Once again another scary moment in our life here in ICU!!! How I wish Little Bug could be a healthy boy.
Sorry for the bad attitude, but my frustrations are escalading!!! I hope to be better tomorrow.
Lovebug Hugs,
Lori
PS ~ Good news, I just got a call from Randy and they are back in the states and they will be home tomorrow......Praise the Lord, Daddy's Home!!!!!!
15 comments:
Lori & Randy,
First, I just want to say how HAPPY I am that Randy is home and able to be with you again today. YEA!!! Thank you Lord for your hand of protection on Randy's life.
I can't begin to know the frustrations that are building within you. I can only imagine. Please know that it is alright to be frustrated and even to show that frustration. Be honest with yourself and with us sharing the burden with you. It allows us to pray more specifically for you.
Last night, our family devotion time came from Psalm 91. Lauren & I's favorite verse is v. 11. We have started claiming this promise before bed every night. We read it in her children's Bible (New International Readers Version). It makes it so beautiful. "The Lord will command his angels to take good care of you." I love it. Not just care, but GOOD care.
Also, I know you long for home so desperately. v. 9 reads, "The Lord is the one who keeps you safe. So let the Most High God be like a home to you." Isn't that wonderful? Home is your place of comfort, safety, where you can be completely yourself. Let God be your HOME.
I love you all.
Connor,
XOXOXOXXOXOXOXXOXO
Love Auntie Heather #2
Lori, You have every right to be frustrated and I think I could venture to speak for others as I tell you to go ahead and vent! We are not here just for the sunny days only to run off on the rainy days...you are in the midst of the storm right now and you and little bug are not standing alone. I say let your heart cry out in it's anguish and let the people of God join you in that grievous cry. God shall hear the weeping and we will trust Him to deliver little bug from the grips of this terrible storm.
It is so good to hear that Randy is coming back to be with you physically, I am sure he always leaves his heart behind. Welcome back Randy!
Susan and family
Lori and Randy- As a mother of three healthy children, your story has just brought me to the feet of Jesus. My heart and deepest prayers go out to you as I cannot even imagine the struggle you are going through but our family will be praying for yours--remember that there's hope for the helpless, there's rest for the weary, strength for the broken heart, there is grace and forgiveness, mercy and healing, He'll meet you wherever you are. CRY OUT TO JESUS. We'll be crying out with you. Love in Christ, The Seabrands Family- Auburn, WA
Hi Lori~
I am at a loss for words today. I am sorry that Connor had a difficult day yesterday. What else can that Little Bug go through? I will be praying that the moving of the tube into his small intestines improves his reflux situation. And, that the doctors can figure out what on earth to do with Connor that will bring him relief and healing.
Praise the Lord that Randy is home! I have been praying for a shortened tour so that he can be with you to support you and Connor at Children's.
Please let me know if I can be of any help.
I love you,
Heather
P.S. Did you receive your Mother's Day package? I hope so. Thank you for sending Grandma RaeAnn up to our house for our WA DC trip. I know she felt torn and wanted to be here and with you at Children's. Thank you!
Dear Lori & Randy
Praise the Lord that Randy is going to be there with you. Of course you are frustrated, who wouldn't be with all you're going through. Don't apologize for venting. That is what your "family" is here for. To lift you to the Lord when you feel at the bottom. We all love you so much and just seek the Lord for answers to your questions. Jesus is there with you and will help you bear the burden you carry now.
We won't give up!!! Love JoAnn& Rip
Lori, please don't be hard on yourself with your frustration, fear, and worry. Anyone who has children with any kind of problem understands those emotions and more importantly God understands. Our hearts and prayers are with you. We're so glad that Randy will soon be with you, which will help to lighten your load. I think one of life's most difficult burdens to bear are when our children suffer. In our devotions yesterday the scripture was Paul's quote regarding his ability to be content in whatever situation he was in and I remarked to Milt, "he didn't have children", at the risk of sounding sacriliegious. I think we can pretty much cope with the different situations we are confronted with, but when our children are suffering, we really don't have contentment until we know they are okay, however, I do know His grace is sufficient in whatever He allows in our lives and I pray that His grace, love, and mercy will envelope you as you wait in this unknown heartwrenching period.
Judy
Lori: God wants every part and every emotion from us - even frustration and anger. In His might he can use all of our feelings to refine us into the beautiful creature in Christ he intends. I have been where you are and I can tell you from experience the Lord can and does love us through every rotten medical report. Don't be fooled - just because Connor can't verbalize doesn't mean the Lord does not make his presence known to Connor and comfort him. He loves Connor even more than you and Randy do and he can provide peace to Connor that no GI tube or medical device can match. Thank goodness!
Love Deb Wendtland
Lori,
What's not to be frustrated about! You have everyone's permission to be frustrated just don't let it rule over you. Praise God Connor has a Mama like you that watches over him and fights for him. What A lucky Little Bug Boy he is!
You are truly on a journey that no one has walked before. There is no Mapquest to get you to your final destination. This is where faith must come in to play. We must walk this road with faith that God will not fail on His promises! Hold tight to His hand--now more than ever.
Welcome Home Randy. I will drop by today if Larry lets me out of my dungeon!:)
I love you lots Lori. Hang on tight Girlfriend!
Love, Maureen
Lord, let today be a good day for Connor. Heal his sick little lungs. We pray the biopsy come back as nothing, let his mama and daddy see a positive change today and healing in Connors sweet little body. As Lori mentioned in her entry, she feels like they are running in circles. Lord, the frustration are expected for what they have had to endure. Lord, PLEASE do a work in Connors life today. Help Lori and Randy see your hand of mercy and grace today. Give Lori and Randy a peace like a gentle wind sweeping over every inch of their body and mind. Lord, give the Doctors wisdom today so Connor's treatment will be on track. Lord, thank you for bringing Randy home early and safe, they need to be together. Thank you Lord for protecting Randy over all his missions. Lord, give Lori rest for her weary body. We know that you love each of us and have a plan. Lord, we don't really want to tell you what to do, but, HEAL littlebug. Let him be the miracle little missionary (strong) boy of God, and let his testimony continue to reach the uttermost parts of the world. I thank you for the thousand that read Connors blogsite and for all the prayers being petitioned on his behalf. Lord, do a mighty work today and we will give YOU all the glory and honor.
Randy, Lori and Connor I love you all so much and let me know what I can do to help, besides praying continuously.
Lori, As I read your posting I could feel your pain although, I have never experienced what you are going through. The pain a MOTHER feels when her child hurts is one that words can't explain. BUT!! Thank the LORD it is during those times that the LORD picks us up and carries us through. This is when we see one set of footprints in the sand. Frustration is an emotion GOD has given us as human beings and YOU have every right to utilize it; just keeps us in check that we can't forget that we personally need a touch from GOD ourself!!! We need to not loose focus on our own well being. I just know that some day the LORD will say to you.
Lori! A JOB WELL DONE!!!
Ofelia Ayala
Good Morning Lori and our precious little Connor and soon to have Randy right there too.
We love you all so very much and the comment that Judy made is so much my heart right now. As parents we can't fix things but we can sure pray for God's hand to move on each of you. All through the night so many things were going through my mind but my thoughts always comes back to Psalms 139:13 For Thou didst form my inward part; Thou didst weave me in my mothers womb. Also verse 15 my frame was not hidden from Thee. So many times the doctors say how complicated everything is but we know that God does know every organ every inch of Connors body and how we are all praying for that to be revealed to the doctors. Lori it is good that you can be so honest with your feelings and your frustrations that is in your heart right now. In the last months you have found a safe place through your writing and all the comments that have been shared truly show how so many have become family. There is such a love that comes through each sentence I am overwhelmed many times how so many thoughts are so confirming it's like the Lord is the one who is bringing our thoughts and prayers in one accord.
Dad and I were so happy and thankful that today Randy will be home. God is so good to bring him home early this too was an answer to prayer. Randy please know that we'er all giving you hugs. May the Lord give you each His strength and also to encourage you.
Please give our littlebug kisses from grandpa and grandma and so much love for you Lori and Randy
I found an old book the other day and one of the things it said was so encouraging:
Strength is often found within the silence while resting in the presence of the Lord.
Abiding in His peace, we feel His power; while leaning on His love, we are restored.
Oh Lori make a picture in your heart and see the Lord giving you rest and peace.
We continue to pray for the doctors to see light in the dark places.
Love you all so very much, when I was caring for Olivia and Brayden and Bergen Luke, Brayden added some more things to our love. NOt only to the moon and back again but to the stars and the sun too :) that is even better, don't you think?
Love dad and mom xoxoxoxoxoxoxoxoxo
Lori,
My heart breaks for you and your family and mostly for little Connor. However, I would like to share this little vision or picture that the Lord gave me of Connoron the day that we all set aside in prayer for him. I was praying in the spirit as I was at a loss of words and as I was praying in tongues this is the picture that I believe the Lord gave me. I was not going to share this and I did share it with your mom on the phone but I think I need to share it with you. I must admitt as I think of this picture that the Lord gave me it brings tears of joy to my face - God is sooo good. Anyway, he was in his room at the hospital - not sure what room but his room was filled with white glistening angels wings! This room was like being stacked of layers of down feathers from the floor to the ceiling. IT was SO beautiful and right in the middle layer of it all layed Connor with the most peaceful look on his face. I do not think we will ever know how he is being ministered to by Jesus as we speak!
Love
Tammy
Oh Lori,
I am SO sorry about all that is going on, the "circles" and the confusion. You have ALL rights to be frustrated, and even MAD. That's not something that God is going to look down on you for. You have to find a way to get that out, and another way to refuel for the next round of information. You've got the bloging down to a science, and are giving such glory to God in the process, with your honesty and vulnerability. But be sure to get that frustration out too.
As for the doctors responses and test results, our prayers are still with you. God knows what's going on with Connor, and He has a plan. In all honesty, again, my prayers to our Lord are "WHY! Where is the end to this season, for this beautiful, FAITHFUL family???" But my trust is in the FACT that He loves all of you, and especially Connor. When you look at Connor during your "snuggle time" and feel that love just overflow for him, just think, "God has a MILLION times that love for me, my family, and especially for my child. He knows what He's doing and all I can do is trust."
You have SOOOOOo many prayers surrounding you, so be confident in the fact that we are petitioning the Lord for any actions that are occurring now, or may continue. Just look straight into our Heavenly Fathers Eyes and know that He is right there and loves you SOOOOooooo much.
You are doing a WONDERFUL job Lori, and it looks like Randy will be right home to take your hand and hold you tight.
Our prayers are for this peace for all of you.
Much love,
From your family in Christ,
The Blanchard’s
Lori,
Don't appologize for frustrations and attitudes. You are so amazing even though I know you don't feel like it. I heard a song on the radio called "I will praise you in the storm" (i think) it was such a beautiful picture of how God is there in the midst of a storm and how every tear that is shed God holds in his hand, how God has not forgotten about us and how powerful He really is and how we choose to praise Him in the most difficult of times. Lori, you and Randy have been the most wonderful example of this. You have still continued to PRAISE HIM IN THE STORM even at your weakest moments.
Praise God Randy is on his way home. Tammy & I are off to a womens retreat and we will all be praying for you three!
We love you
Sue & family
We love and care for you guys and pray that Conor will get better soon and that God will just provide and protect you guys as each and everyday passes by.
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