Thursday, May 04, 2006

Mama's Intuition Wins!!!!!

This morning started out with the news from the docs that, "Connor looks great....we're taking his central line out and we're sending him to the floor today!" When I called down to the room and Randy gave me that news, my initial reaction was....WHAT?????????????? I had a significant gutt feeling that today was not the day to be moving Connor. I rushed to get dressed and get down to his room to speak with the "team" about their decision. I told them that I didn't feel good about the decision and that Connor needed to prove himself for a longer period of time in our estimation. The docs re-evaluated and said they would spend one more day watching him. Sure enough after a great morning and snuggling with Auntie Teresa and Grandma R., Little Bug went balistic!!! He freaked out for about 3 hours and after 2 doses of Morphine and Ativan he finally started to mellow, but only for short periods of time. His temp shot up to over 103 and they had to do the routine blood draws. This became difficult because they had removed his blood draw IV line earlier in the day, so he got multiple pokes in the arm and head. I think we scared Grandma R. right out of the room. Little bugs heart rate escalated to 202. His respirations went sky high as well and he ended up back on c-pap. Just now about 8:30 his temp is coming down and his numbers are looking better. Whew.....what an afternoon. When the docs came in they said, "Boy, I'm glad we didn't send him to the floor today!" I guess Mom's really do know what's best. Even Randy agreed that this was the best decision.

We didn't find out anything new today regarding the seizures. They hope that the new medication they started him on will stop the seizures. We didn't see any evidence of them today so we are grateful that the meds are working on his behalf.

This afternoon took a lot out of Connor and he looks wiped out. If there is a consolation to be seen in any of this, it would be nurse Amy!!!! Oh my how we love nurse Amy. We occasionally "catch" her kissing on Little Bug and loving on him in the most adoring ways. When she touches him she touches him with love and care and skill all at the same time. If we could hire her to be our full time nurse we would!!!! Go nurse Amy!!! She agreed with our concerns for Connor that his belly seems to be hurting him. Together we discussed that maybe he's getting too many calories in efforts to fatten him up and maybe it's causing him distress. We will be re-evaluating this very subject with the dietician tomorrow. At the moment his feeds have been stopped and he is getting IV fluids so that he doesn't get dehydrated.

I forgot to mention in yesterday's blog that they moved us again. Yep, that's right. We made move number 12 yesterday after Connor's EEG. I think we must be on the "stay in every room plan" here at Children's. It's actually becoming a bit of a joke around here that we need to wear roller skates because you never know when were moving next. I guess we are learning flexibility in more ways than one.

Yesterday was also a particularly hard day because the Lord saw fit to call another sweet baby into his loving care in Heaven. Little Jackson Stone passed away yesterday afternoon and our hearts greive with Paul and Tiffani, his parents, as they find some way to say goodbye to their precious son. Please pray for this dear sweet family in their loss. Baby Michael is also still fighting and his parents are such troopers. They need continued strength to make decesions and plans for their little miracle as well. How we all need a special touch from our Lord and grace to make it through each moment of every day. Your continued prayers on our behalf are upholding us and lifting us up daily. We feel strength because we know you are praying. Thank you for being the army of God on our behalf.

Goodnight and Lovebug Hugs,
Randy & Lori and Little Bug

11 comments:

Anonymous said...

Randy, Lori and Baby Connor,
Just want to let you know that you are always in our thoughts and our prayers. Julius prays for Connor every night. Hang in there! God will pull you through....
Mike, Chelly, Julius and James

Anonymous said...

Lord,

Please be with these amazing families that have to make such difficult decisions daily regarding their precious children. Help them to feel the power of our prayers and encompass them in Your heavenly embrace.

Amen

Little Bug- I hope you get some good rest tonight after your tough afternoon. Mommy and Daddy too!

Anonymous said...

I know the struggles are many and very hard on all of you. I'm so glad to see that you continue to hang on to your humor.

Lord,
Please be with these families and hold them in your arms. Bless them with comfort to get through their pain. Heal these little babes so that they may go home and begin their lives with their own families.

Hang in there Randy & Lori. Little Bug has got to win this battle.

Dan & Jill

Amy Fields said...

Despite all his struggles Connor looks so great- I love to see the pictures of his little face, tube free. You are doing such a wonderful job as his advocate and his voice. Keep up the good work, I am so proud of you. We will continue to pray that God will shower answers and healing all over that precious boy! I'll be down soon to visit!
Amy

Emery six said...

Randy and Lori, Thank the Lord that Lori heard His voice and kept Connor right where he needed to be! My heart is grieved at all that you and your little sweetheart are going through.

Thinking of you and hoping Brent and I might run into you at the hospital tomorrow afternoon when we are there for his Oncology clinic visit.

Love from Susan (and gang!)
PS How wonderful that Connor has a nurse with such a beautiful loving spirit!

Auntie Heather Milliren said...

Randy, Lori & Connor~

What a day! Lori, I am so thankful that you went with your intuition yesterday. Mothers do know their babies best. Daddies, too. I know that you will always question the team's decision to move Connor to the floor. It is your right as his parent and advocate. I am sure that the team is simply trying to move children out of ICU to make more room, but our Little Bug seems so fragile. Stand your ground! I am so proud of all three of you.

Did Randy's tour get delayed? I hope so. I know he would much rather be with his two most favorite people in the world.

Hang in there!

We are praying for you as always.

Oh, Happy Cinco de Mayo. Maybe the cafeteria will have the taco bar today. :)

See you tomorrow.

Love,

Auntie Heather, Olivia, Brayden and Bergen Luke

P.S. I am sorry to hear about the little one who passed away. Our prayers are with the family. And, we are still praying for Michael. Boy, it must tug on your heartstrings so hard.

Maureen said...

Lori,
Way to go! I've always said to trust your intuition and look what happened! I know it's not scientific or medically sound but 9 out of 10 mothers agree it works!! And there's the proof!

Keep hanging in there!
Love, Maureen

P.S. I got your packages last night and they are all tucked away in the freezer with the rest of my organic game!!

Jacqueline Hendrickson said...

Lori,
LOL, I am laughing at Maureen's message. I know what type of ORGANIC Game you are adding to her freezer. You are an amazing mom and you are giving yourself 100% sacrificially to your son. He will rise up and call you BLESSED!
I have to send my praise to Randy also. Randy you are right in there giving your wife the support she needs. I know this is not easy for an active guy like you to radically change your life style like this. I also know that your love for Lori and Connor is what makes it so. Bless you my friend.

Lori, you will be celebrating your first Mother's Day in just another week. That is such a significant day for you. You will deserve a grand celebration for the type of mommy that you are. I am so proud of you, my friend.

Love you so much,
Jacqueline

Candy Bennett said...

Dear Lori, I don't care what Doctors believe, WE KNOW! Mama's always know! God intended it that way. Before there were doctors there were mothers! Praise the Lord God saw to the care of children long before there were tests and probes! Don't ever be afraid to voice your opinion. Great job!

We're still praying. Daily - sometimes hourly. We check for your blogs throughout the day and always stop to pray for all of you. It is amazing to me that God cares for us so much that he provides ALL the support we need through family members and fellow brothers and sisters in Christ who are close and those who are far away too. We often feel as though we are holding up your arms towards heaven till the battle can be won!

Love you,

Candy Bennett

Debbie Christian said...

Randy and Lori -- our prayers continue to be with you....Connor is such a fighter....

You have been a blessing to our hearts as we read your journey...

Just a note, I have a new job and would like you to change your email contact for me to
debbiec@theauburnfoodbank.org

Debbie Christian

Anonymous said...

Lori,

This morning as I was in prayer I was asking the Lord to send His special presence to you and also to me. I wanted to know that He was working on behalf of Connor. I closed in prayer and off to Big Lots I went. He answered the prayer about forty minutes later. When I got out of the truck, something landed on my arm. When I looked, it was a lady bug and it had a lot of spots. It reminded me of how I've asked the Lord for many, many years for Connor and that his life would be such a blessing. As I've looked at the blog many times there is always a lady bug near him, and I know God sent the beautiful lady bug today.

I love you, Lori.

Tonia