Wednesday, September 27, 2006

Operating Room....Here We Come Again!!! AUGH!

As Randy reported earlier today, Connor's heart rate had come down significantly in the morning and mid-morning hours. It has, however, risen again with his level of distress. We've been meeting with the lung specialist's and the GI specialists and the gerneral surgery team and the cardiac team the past couple of days and the bottom line is looks like we're headed back to the OR. The general surgeon believes that the hiatal hernia that Connor has is defined enough to be causing him distress so they would like to get that fixed. They also have known, for months now, that the Nissen Fundoplacation that he had done has failed by 50%. They would also like to re-do the wrap on that to see if it will relieve any of Connor's "suspected" reflux. The surgeon mentioned that they will not be able to do this one laproscopically because they will not be able to see as much that way. What will end up happening is they will extend his open heart surgery scar at the bottom of his sternum and continue it all the way past his belly button. Once they have him opened up they feel that they will be able to get a better picture of what is going wrong with his basic anatomy and hopefully be able to fix and repair the problems they find.

To be quite honest, I am glad that there is a plan in place, but we are also aware that it is not a for sure fix of anything. It could very well be a shot in the dark. We certainly hope that it will provide Connor with the relief that he needs, but I think we'll believe it when we see it. Connor also has to get well enough to even go in to the OR. Today they put him on an antibiotic that they hope will begin to kill whatever is attacking his lungs and airway.

We tried him off the c-pap for about 30 seconds today and he simply cannot handle it. He immediately became agitated and dropped his oxygen dramatically. They are continuing to sedate him because once he wakes up, he is fighting to get that c-pap off his face and he has a very difficult time getting settled down. My oh my it is difficult to see Little Bug in such a state once again. We had so hoped these days were behind us, but we know now that this is the way things are going to be until we can get to the bottom of it. We are frustrated and tired, yet hoping and trusting for the very best for Connor. We came home tonight to regroup and get some rest. I will head back to the hospital tomorrow morning and I pray that my outlook and perspective will resemble something more positive than it has been the past couple of days.

Dear Lord, Please cradle our sweet Little Bug this evening when we are so far away. May he hear your sweet voice beckoning him closer to your heart. May the angels sing to him and keep him company in his sleep. May your strong, healing hands cover each area of discomfort and bring him healing and peace. Surround his room with the gentle wind of your spirit and may all who enter be blessed by our fearfully and wonderfully made little boy. We thank you for our son, he is a gift from you and we cherish him with all of our hearts. Please take away his pain and let him be the little boy he so desparately wants to be.....happy & healthy and living at home. If it be your will dear Lord, please grant our requests and heal our son!! Amen.

Lovebug Hugs,


Anonymous said...

Oh Little Bug,

I am thinking of you and your mommy and daddy tonight as I head to bed. I pray that this next surgery will provide concrete answers as to why you are going through all of this. Sweet Connor, what a testimony you are going to have!!!

I also pray for you, Randy and Lori, that God will comfort you and keep you extra close.

Heather said...

Randy and Lori,
How your heart must ache to have your little bug with you with those beautiful big smiles on his lips. Rest tonight, knowing that he is in good hands, the hands of his Creator! It never ceases to amaze me with as much as I love my children, that God could love them even more. Oh how he loves to hold Connor, cuddle him, sing him to sleep, take good care of him. What is also amazing and wonderful is that he feels the very same way about you and I. So tonight, as you go to bed, lay there and know that God is loving every moment of holding you, cradling you, singing over you, taking good care of you. You are his precious child, just as Connor is. Let him care for you all. Rest in His love tonight.

Lord, give every doctor that sees Connor an amazing insight into his life and body. May they see things as you reveal. Please keep Connor from any pain and guide the doctors to only the procedures that will progress Connor's healing. God, heal him we pray!!!!

Love you all!
Auntie Heather #2




Anonymous said...

My heart is with you as you continue your journey. Any strength I have left in me please take on this trip. All the best be with you.
With love and prayers, Tiff
STONE lives in us all
May his personal angels wrap their wings around to keep him safe. He is never alone. What an honor to share Stone with Connor.

Anonymous said...

We con't to send many prayers and think of you all everyday.

Jon & Cheryl

Bug said...

OK Kid-o time to get well, its time to be a baby and be home sitting up in your bumbo chair and playing on your tummy.... I pray that you can over come what is attacking your lungs, and get strong so you can have your surgery little bug... maybe this will be the one that fixes all that ales you, and you can go home a be your cute little bug self! I believe in you Connor, Ive seen you over come so many challenges, so many more then you should have to endure. You are strong and you are defiantly a fighter. Ill keep you in our prayers little bug! BIG BUG HUGS Sheila and Skylar

Anonymous said...

Randy, Lori, and Little Bug,

We are sooo sorry to hear that you are back in the hospital! Hoefully things can be straightened out this time around and get you home once and for all. We have been in the hosptal too, in Wisconsin. I wanted to get ahold of you to ask if the docs had checked Connor for an annular pancreas. The pancreas grows around the small intestine. If it does go all the way around, it will split into 2 lobes and can sometimes cause severe pancreatitus, which our doctors described as exactly what Connor is doing! We will continue to keep you all in our prayers. Good luck!

Steph in Illinois

Denessen family said...

Lori & Randy,


Ted, Teresa, Chloe, Emma & Jake.

Susie - Maggie's Mom said...

Lori, Randy and Connor, I hope you were able to get some rest last night. You have all been through so much and its really heartbreaking reading your entries when Connor is in distress. We are constantly praying for that little bug, for the doctors to finally figure out what is causing so much pain in his little body and praying for the two of you, Randy and Lori to continue having so much strength and faith. You are just amazing people and I feel so blessed to know you. Take care. Love, The DeVries Family.

Anonymous said...

Randy & Lori,
We are continuing to pray for wisdom for the doctors and that once and for all this problem will be resolved. Jesus, touch this little guy, wrap him in your arms and comfort him Mommy & Daddy too. Lord, we pray for quick miraculous answers on Connor's behalf. You are a mighty miracle working God and we trust you to take care of this "little bug"! AMEN!
We love you guys
Sue & family