We've been released from the hospital after what was a frustrating and unproductive stay. Nothing came of the tests that were preformed on Connor today other than to say that everything is just fine. No dumping syndrome, or if it is it is extremly mild. No Hershenbergs syndrome. His anatomy is perfectly normal so there is no reason that he shouldn't be able to preform typical GI tasks without problem. Well, the problem is that that is not the case. We are so frustrated and angry. I have spent the entire night in tears, Randy is mad and Connor has been screaming in pain because they changed his G-Tube and it is raw & bloody. They released us with the most ridiculous orders and no pain management for Connor. We are glad that Mayo Clinic has been helpful for others, but for us it has been nothing but trouble.
We are at the Ronald McDonald House tonight and tomorrow we will see the original doctor from Monday again. The only things that they have told us are to change the rate of speed at which Connor gets his feedings and maybe that, along with a formula change will do the trick. In their eyes, there is no urgency of finding what is causing the problems, only experimenting with things we've already tried. Granted we are tired, frustrated and far from home, but we are starting to feel that things are never going to change and this was just a major wild goose chase.
Forgive the candidness in which I speak, but it is from an aching mother's heart who is weary from this long battle. As always, we remain hopeful but even that is waning.
Lovebug Hugs,
Lori
PS ~
I understand our little angels at home got lots of extra TLC and playtime today. How we loved the pictures and videos on Facebook. We are ready to come and see them.
11 comments:
Praying for clearer direction for the medical staff and for you and Randy. And crying with you.
Lori I feel your frustrations, I wish they had the direction and answers you needed to hear, and who knows maybe tomorrow will be a better more in lighting day! Saying extra prayers tonight for all of you! Hugs Sheila
Oh Lori and Randy,
I am soooo sorry! We were really hoping that something would come of this.
When you get home, and get a chance please, please call me. I may have some information that could be helpful for you, but it is too long to post here.
I will send my phone numbers to your e-mail. Still praying for you!
HUGS!
Steph and Christopher from IL
stephani.wyatt@att.net
Lori and Randy,
I hope you read this before you leave MN. Is there any way you can rent a car and get to Milwaukee? I happened to be speaking with our GI doc's nurse in Chicago about Christopher, and I read her what was going on. She had our GI doc take a look at your website.
His advice is to get to Children's Hospital of Wisconsin in Milwaukee. Take Connor in through the ER and DO NOT LEAVE until you can see Dr. Colin Rudolph. He can't officially refer you as Connor is not his patient, but they are good friends. Dr. Rudoph writes the textbook used by GI docs in med school!
I have e-mailed you my phone numbers. Give me a call if this is something you want to try, and I can give you all of the info that I have on them (phone numbers, directions, etc.)
Hugs,
Steph in IL
I am so very sorry to hear you have not had a positive outcome from Mayo.
We continue to pray for Connor and your family.
Oh Randy & Lori! I know hope is waning, but I want you to know that this is another one of those "Aaron & Hur" moments. We will stand on either side of you and hold up your arms. God has been faithful over and over again. He is still continuing to be faithful. Remember what was in Moses' hands that they held high?...The Rod of God. The very rod that God used to prove Himself to the Israelites and part the Red Sea to make a way for them. What Moses held up that day was a reminder of the power and miracles that rest in God's hands. Do not lose hope. Remember His power is still at work. Love you and praying for you.
Dear Randy and Lori:
As I was praying specfically for you this morning, God brought the testimony of Shadrach, Meshach and Abendigo standing in the fire and when the enemy looked in their was a fourth...the Son of God! This is not a story, it is the lifesong of three men (as you are three: Randy, Lori and Connor) this testimony is hope to those of us in 2009 our God IS with us. Though the flames may be hot and licking at our bodies, soul, mind...Jehovah Jirah provided a way out. How did God do this? I don't know. How will He deliver you, I don't know. But HE WILL PROVIDE AND DELIVER! As you connect to him in faith, don the armor of God, your general is doing battle and he will fight the good fight for you! Truth Project talked yesterday about how God reveals himself in triune form. The beginning started with God, Jesus and the Holy Spirit. There is the husband, wife, and children. There is God, Pastor and flock. TODAY THERE IS RANDY, LORI, CONNOR...He is with you and the saints are on our knees our focus is on the General and we are following where He leads! Love, SMZ
we are sending our love and prayer and lots of hope that the drs trust in your knowledge of Conner and look farther into his. we love yo guys~wyndi
I'm so sorry to hear that you didn't get the answered your needing for Conner. You may not have won this battle, but you'll win the war, you have God on your side. I'll continue to pray healing for Conner, and peace and understanding for you and Randy.
God Bless.
All is not in vain...We stand with you in frustration and wanting answers for Little bug. Do not worry about every being frank...God doesn't want you to hide your feelings but he does want you to trust. And so it is we Trust again just like 3 years ago that I'm sure you (we all) thought was never ending in the Hospital for like 8 months..practically straight...BUT eventually Connor came home! God is working even now, even when you don't feel like Trusting or giving up control...I know you must miss Miss Mackenzie and sweet Alex. you'll see them soon. We will claim to the fact that God is working and we will persist that Connor's pain is addressed. We love you guys, Keep up the Faith.. Love & Prayer's, Aunt Teresa and family.
Remember not just one but an ARMY of saints are praying, God will answer in his time. AND MAKE IT QUICK please.....Give hugs & Kisses to our little Man/trooper...
Lori and Randy,
I am so sorry that you were unable to get answers about Connor. I am praying for you and for Connor. Connor is such a precious child. Know that God hears your prayers and HE WILL HEAL CONNOR! I will continue to prayer for answers and for healing.
Angela
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