As most of you know, last night was a tough night for Connor. Through his struggle for breaths the doctors exhausted all of their resources for ideas to help him. I finally went to sleep after he calmed down about 2:30am. This morning he found a bit of a respite from his struggle. After meeting with the docs this morning they indicated that he may have what they call, upper airway constriction due to many factors. First, with Connor having down syndrome they suspect that he could have a thicker posterior tongue and when he positions himself to get better breaths by leaning his head so far back, his tongue may slightly slip into the back of his throat and cause a blockage. Second, there may be significant swelling from the breathing tube being in. And thirdly, his nasal passage ways may be blocked from all the tubes he's had up his nose. They are trying to remedy the swelling issue with steroids and they are considering a type of neck brace to position his jaw in a way that opens up his throat. At this point they can't find a brace small enough for his little neck and jaw area so they are using rolled up cloth diapers to help prop him up in different positions. Wow, who would have thought breathing could be so complicated.
Thanks for the morning visit today Maureen and Susanne!! It's always so good to feel the love of family and friends and today I really needed it after such a long night. Thanks for our new bunny "Mr. Pickles" Susanne, he's absolutely adorable.
Well, as you can probably imagine Mama is tired today. I've tried to lay down twice to catch some zzzz's but my mind races with thoughts of Connor and I am quickly up again. Hopefully, tonight will be an earlier night to sleep than last.
Many of you that are reading our blog have sent email messages that you are having a hard time leaving a comment. Here's how you do it. After reading a blog you will see a comment box at the bottom. Left click on it and a comment box will appear. Write your comment where it says Leave a comment and then at the bottom where it says Choose an Identity click on the word Other and fill in your name. Leave the webpage blank and then press Publish your comment. Viola and your done!!! I hope that didn't seem too elementary, but some have asked so I wanted to respond. We LOVE getting your comments. We LOVE to know that you are praying. I think I'm just as addicted to this blogging thing as some of you have told me you are, HA!
Some of you have also wanted to come for a visit and we would love that. I will let you know that while we are in ICU they are pretty strick about allowing family only barring a few exceptions. So I will let you all be the judge of what you prefer. If you want to come to visit with us, we would really love that. If you want to see Connor, you may need to wait until we are moved to a regular room on the medical floor, which will hopefully be soon. As always we will keep you all posted on where we are so you can make your best determination of when to visit.
Sorry for a blah sounding blog with "just the facts". Hopefully I will be back to my writting style tomorrow.
Lovebug Hugs,
Lori
18 comments:
Oh Lori, I can imagine the tiredness you feel. Get some rest tonite. I pray you can feel comfortable with leaving Connor in the nurses very capable hands. Praying & hoping the doctor's are Alot closer to figuring out what Connor needs to breathe easier. Our little nephew is so adorable , I just love all the picures...it makes me feel like I'm right there with you guys. I am planning on coming down Friday! If everything goes as planned I will be bringing lunch for us.
All our prayers! We love you guys.
Love, Teresa
Oh, Lori! How many times have I told you to get more rest! Goodness! :)
May peace come to your heart, sweet friend, so that you may rest your weary head. Sweet dreams....
Love,
Ruthie
Hi Lori, Randy and Connor,
we are reading and praying for you all. My friend from church is a nursing Supervisor there at Childrens and she knew about connor, but not our family ties. Her name is Britt and she will be stopping in to check in with you. I know this is such a scary time for you. You are really amazing. Your strength is a beacon for the rest of us. May God continue to grant you the strength hour by hour and day by day.
Janel and Steve
Dear Lori
I need to tell you a quick blessing that happened today after we left you. We went to lunch at a place called "Mom's Diner". We sat down and they gave us two menus. The cover of the menus were colorings by kids. I think they called it Mom's Art Work. Anyway Susanne gave me my menu and it had a black bug drawn on it. The "artist" was a 7 year old boy named Connor. We felt blessed and it still brings a smile to my face. I feel it was just a little nugget sent by God to let me know that He is God!! God likes to do special things like that! I hope that brings a smile to your tired soul. Go to sleep my dear sister and sleep tight. Connor is resting in the arms of Jesus. I love you.
Love Maureen
PS We had such a nice visit and I hope it didn't wear you out too much. And I am so impressed by those Doctors. Let's pray this collar will help Connor breath much easier. Give Connor kisses and hugs from us.
Love Maureen
Dear Randy and Lori,
Gary and I are sitting here reading all the new information about Connor. We will pray tonight for you all to get a good night of sleep and especially for Connor's breathing to become more regular. You are all on our minds throughout each day. We love you, Gary and Lynette
p.s. we may see you Sunday afternoon, but we will call first.
Dear Lord, give Randy and Lori a peace that surpasses all understanding. Use Your arms to not only comfort and cradle when he can't be held by his mommy or daddy, but cradle his mommy and daddy as well. Hold them tight and continue to show them Yourself through all of this.
Randy, Lori, and Connor...we all love you and are saying prayers for you constantly.
Lori, Mom and I are prayiny sooo much for Connor and you and Randy. We pray that Connor would be able to breath on his own and he would not have to struggle so hard.
Love,
Dad & Mom
Hello Lori and Randy and Connor,
I check in here in the am and evening to see how connor is. He is so beautiful Lori!!! I pray God's immense blessings on you, that His Arms are around you, cradling you in His tremendous Love. He will give you rest, peace and a continued hope to know that COnnor is truly in His Care. I wish I could come sit with you, and meet this little man, but I can't drive very far right now, I get sleepy when I drive for more than a half hour.
Know that we will continue to post and keep in touch and pray for you all. I love you guys!! Darina
I'm praying for Connor right now.
John
Connor,
Me, my mommy, my daddy, and our 5 cats (Priscilla, Calvin, Oliver, Willow, and Logan) are praying for you. We know you're going to get through this and can't wait to meet you. Tell your Mommy to listen to Josh Groban's song "You Raise me up". It always makes my mommy and daddy feel better.
Love
Morgan
Precious family. Mike and I have just finished praying on your behalf and are trusting that God would breathe His breath into Connor so that another miracle will take place and Connor will be on his way to the next step of the journey. Connor is a fighter, that's for sure, and with a breaking-through God on his side, who or what can stand against him?
Talk with you soon.
Love,
Mike & Tonia
Randy, Lori, and Conner,
When my son Dakota turned 4 his uncle, my husbands brother Phillip, gave him a book called The Gigantic Little Hero. It's a story about an ant who didn't think that he was big enough or strong enough to help gather food to help out with the harvest. At the end of the book the entire story was summed up from one bible verse. Phillipians 4:13 I can do anything through him who gives me strength. 2 1/2 months later my brother-in-law passed after battling leukemia for three years. He was only 21 when he died and he was one of the most sincere christians I have ever met. Through everything he went through he always kept his chin up and believed that God had a purpose for what was happening.
That was the first bible verse that Dakota ever memorized and to this day is his favorite.
Last night before bed we were reading that story. I have shared with my seven year old a little of the hurdles that you have been faced with concerning Conner. When we were done reading the story he looked as if he were thinking very hard.
I asked him what was on his mind and he thought for a little while longer and then looked at me and said, "I know that lady you were telling me about isn't trying to gather food but maybe this bible verse would help her....Maybe you should tell her that she can deal with anything if she belives that God is giving her the strength to do it."
Crying, I gave him a hug and told him that I believed that you already knew that but that I would relay the message.. He then told me that the angels are telling that to Conner too. Just like they did to his Uncle Phillip.
I remember Phillip talking about how sometimes he didn't feel he had the strength to continue fighting the cancer but that that was the time when he prayed to God the most and asked him to give him the strength to keep battling with a mighty sword.
I pray that God keeps giving all of you the strength to continue fighting with a mighty sword and so does my seven year old...
Keep your chin up and remember that God is on your side. He's on Conner's side and will give you the muscles to keep going.
Love~Tia
Hi Lori!
It is late and I hope you are sleeping soundly! It was such a special day today to finally get to meet Connor! He is truly a special little bug! I so enjoyed our visit and hopefully we didn't stay too long. You seemed so calm and at peace today, I felt so assured that God has everything in control and that He is our ultimate caregiver (along with all the wonderful docotors and nurses that were there today) He will see you through! Hope we can visit again soon. Lots of love and prayers,
Susanne
Lori,
I am praying for you right now. I pray that you find secret strength today and always. Please scroll back through the blog to my comment left under the "Ventilator out. . .for now" entry. I truly mean every word and want you to read it again.
I love you dearly and want you to get some rest today. Connor will completely understand if his mommy needs a nap or two today. Take advantage of your nearby sleeping closet and retreat. I know, this is easier said than done, especially when the nurses keep calling you back. I will pray today is a quiet, calm day.
I love you,
Heather~Your sister-in-heart
Hi Randy & Lori, thanks for explaining how to write to you, I have been wanting to write to you & let you know we have you on our minds & hearts. Our prayers are with all 3 of you. We so appreciate reading your descriptions of your trials & agonies. Everyday I read your news. We haven't been able to access the net for a couple days, but finally, we got on.
Stay STRONG as you climb your mountain. Remember how great it was when you physically did some mountain climbing and you reached the top!
We will be home about the 4th of April, hoping to see you soon. Love Phyllis & Norris
Lori and Randy,
You both are wonderful. My heart aches for little Connor. My prayers and thoughts are with you.
Lori & Randy,
Our hearts & prayers are with you. We were pleased to see that it appears Conner is gaining weight! Your writings are beautiful - I hope you can print them out & save them. We continue to keep you all in our prayers & we will see you soon!
Hello,
I'm Raeann Bruland's friend from Camano Island and and she shared your inspiring love story, with me. WOW! That took my breath away and filled my eyes with tears.
I pray for you and your family for strength, patience and a miracle that would come and brighten Connor's days. Hang in there and keep your chin up.
God Bless You!!
Angie
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