I know you have all been waiting for an update on Little Bug. How we had hoped that when we posted again we would be able to say great things of how he is doing. With a deep sigh of frustration we report that there is really no change at all and in fact things seem to be looking in a grim direction for Connor. On Tuesday of this week the pulmonologist did a bronchoscopy on Little Bug and discovered a moderate floppy lower trachea. This is called Tracheal Malasia (sp???) Basically this is when Connor's ariway collapses and he is not able to move air through his trachea to his lungs the way that it is supposed to. When he is on the ventulator it is automatically forced open so it doesn't seem to be as big of a problem. Unfortunately, there is nothing they can do for this condition at the moment. They say that growth and good nutrition are the keys to help Connor gain strength and fortitude, but we aren't even at a place where he is getting either of those two things. The most drastic and invasive treatment is for them to do a tracheostomy on Connor's airway. As they have told us, "We're not there yet, but be prepared. We may have to have that conversation."
Today we had a care conference with the main components of Connor's care and they decided to give Connor another chance to come off the ventulator, hopefully this weekend, and see how he does. If he does great, then they want to see how he will do with the help of c-pap and extra oxygen to get him by, but they are worried that these episodes of respitory failure will continue. If he fails again, like he did last week coming off the vent, then it will be the conversation that we dread!!!! All the doctors admit that we aren't doing Connor any favors by keeping him so sedated and in fact, it may be doing him a lot of harm and it may be having the opposite effect on his drive to breathe. It is a delicate balance, as we already know and Connor needs to somehow find the strength to fight to breathe without being sedated because of agitation.
As you can probably imagine, we are discouraged, confused, worried and hopeful all at the same time. If ever we have banded together to pray for Connor, it is NOW!!!!! He needs a miracle in his airways and lungs. God will have to step in at this point for Connor to escape another dreaded procedure. Please join with us, hold our hands up and pray for a miracle for Little Bug. He's counting on us to fight for him and we are not giving up. "We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.......Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." (2 Corinthians 4:8,9,16,17,18)
Lovebug Hugs,
Randy, Lori & Little Bug
13 comments:
I found your blog through the blog of the friend of a friend. I have become very interested in Connor's story and check every day for news. I pray for him daily. I just want you to know that his life has really touched mine. I am struggling with my own problems and with my faith in God. As I think of your little boy fighting in his hospital bed, and you his parents stuggling to keep going and yet continuing to put your trust in God, I know that this is an example for me in my own life. Please know that I will pray for a miracle for your sweet boy and for the two of you. Thank you so much for sharing your personal story.
Wow guys ive been waiting for good news, I was wondering how his airway looked after his test, I kinda figured it wasnt good due to no new post. I have to say just from what Ive been through with Skylar, being on a vent for as long as my kid-o was, was not a good thing. And doing the trach was totally the right choice, it gave him freedom from drugs, freedom from major machines. And right now he is doing so good... Im blessed for the improvements I see in him. And Im blessed to have him as my son. The doctors are right, even if its something you dont really want to hear, you got to get him off the vent. And he has to build strength to do that. A trach is not forever, its a hassle, but its not forever. So no mater what you guys have to face, please just always remember a trach is not forever, but a way to get little bug free from drugs, a way to let him gain weight and strength. However I do hope and pray that his airway heals and gets strong and that he finds the drive to breath on his own and can do it. Trust me I want him to do it. Its like I said a trach isnt the end of the world but its not an easy thing to take everyday, there are good days, bad days and great days. Either way the Lord will guild you and comfort you in all you have to go through.
I Love You Guys
BIG BUG HUGS Sheila
Rnady, Lori , and Connor,
How we have prayed for this NOT to be the case for Little Bug. We are going through the exact same process right now with Christopher. He has surgery at the beginning of November....We will continue to pray for all of you....for Connor's lungs to be healed, for strength for you and Randy, and for the continued care from the doctors and nurses at your hspital. We are traveling back and forth from Wisconsin to Illinois right now, but please e-mail us and get our cell number. You can vent at us anytime. We are right there with you! :)
We will continue to keep you all in our prayers.
Steph in Il
Randy and Lori
We will continue to go to battle to fight for this little guy!
LOve
Tammy
we are praying for his strength and yours! he is a strong little guy. you two are doing such a wonderful job taking care and protecting him. keep faith in all things including your ability to trust the caregivers and get rest for yourselves. lori you are a wonderful mother and valuable advocate for connor at this time. so many people are in awe of your honesty and strength. you might not feel strong at times, but you are and you have an army of friends and families that will and do pray. if you need anything don't hesitate to call. I know that during your hard times you are still reaching out to other moms at the hospital and helping them. you are truly a gifted woman. we are very proud of you and honered to know you. promise if you feel like you need a hug, cup of cider, dinner, walk with a friend and izzy, a place to sleep with a window just call. i am not promising my house will be clean:) but my door is open.
Dear Randy, Lori, & Connor...
"When Randy & Lori's hands grew tired, their friends took a stone and put it under them and they sat on it. Their friends held up their hands, friends on one side and friends on the other, so that their hands remained steady...and the enemy was overcome..." Scripture personalized from Ex. 17:12, 13.
You have a band of believers praying for you consistently in Riverside! We love you guys, and Little Bug has "wormed" his way into our hearts as well.
Love & prayers, Gene & Kathy Carter
I've been checking every morning, waiting for news, hoping it would be better but we keep holding on to the Lord, praying for help for Connor. As Kathy said you have a strong prayer support group here in Riverside. You are prayed for not only at every service and meeting we have, but by people at home and friends they contact. I believe you now have friends around the world holding you up. Our hearts go out to you and our prayers go up to God. We love you Rip and Jo Ann
Lori, Randy and Connor,
My thoughts and prayers are with you daily.
Jackie, Scott and Trevor
You fight this battle not alone, but with an army that has, is and will continue to stand on behalf of Connor's life. God is our armor bearer, our defense and THE Commander in Chief; therefore, He will have the victory! ShawnZ
Hello, I was recently emailed a link to your blog. My son, too, was in an extremely similar condition 5 years ago. He spent the 1st 6 months of his life in the NICU on life support. He, too, had a collapsed lung & was ventilator-, steroid-, oxygen- & sedation-dependent. After 6 months, our care conference in the NICU resulted in us being told the only choice was for our son to get a tracheostomy/remain ventilator dependent, with a slim chance of him surviving the trach surgery. We did not choose a trach, and he was discharged home with 2 weeks to 2 months to live. We were sent home with a death plan & morphine/hospice to help him out. I want our experience to encourage you, b/c 5 years later our son is still alive. It has been a difficult 5 years medically-speaking, but our son has taught us what life is really about. We have gotten through the last 5 years due to our faith in God, and his protection/blessing/strength in our lives. We lift you & your family up to the Lord so that you may be comforted during this extremely difficult time. May your family cherish your time together, for however long your time together will be. Thoughts of support & prayers for you all . . . God Bless.
Connor we continue to send prayers up for you.
Stay strong Randy and Lori
Jon and Cheryl
Lori & Randy,
We are praying for a miracle for Connor and praying for peace for the two of you!
We love you guys!
Sue
Connor has become a regular to be included in our prayer time each morning. We will be no means quit praying for him. What a little fighter he is. He is fighting his battle so as to win!
Richele & Nick
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