Today was an extremely hard day. We were scheduled for an MRI, but the procedure was stopped midway through. Caroline was put to sleep, while they looked and poked for veins for 45 min. The pediatric anesthesiologist was quite humbled and explained that he could not perform the MRI and he was sorry, but he could not get an IV started. I did not know what to think, but for some reason God did not allow us to have this test and for some reason Caroline was sparred from excess radiation. She has had 5 different total x-rays/ tests that involve radiation and for some reason we were not able to do this today. After the pediatric hospitalist found this out she decided to cancel the procedure. We will not have an MRI as an in patient, but possible in the future as an outpatient procedure.
Caroline was stuck 9-10 times while under sleepy gas. After we recovered in recovery we were brought back up to our room for quite a while and then we met with the GI doc. This happened very quickly. She looked at Caroline, she listened to me and read Caroline's history before meeting with me. She drew out and explained a g-tube procedure and how this would benefit Caroline's feeds and weight gain. I am in full support of this as we have lost weight and not gained much at all here even with a feeding tube. Caroline weighs only 6.8 the same weight we arrived here with. Things are pulling together. We will be here for a while longer. The surgery is scheduled for Thursday at noon. It should only take an hour from start to finish. It is a two part surgery. We will come back in 3 months for the tube to be completed with an external button called a mickey button. The closure is shaped like a Mickey Mouse. So we have many things happening. Cam is gone this week and will not be here for all of this. Carley will be cared for by Nana and Mimi at this time and possible neighbors if glitches arise.If that was not enough to deal with, Caroline was taken away again to a treatment room with a team of people to try to start an IV in several places to re consider the MRI and to prepare for Thursdays surgery. Once again after one hour no success - her veins kept blowing. So we are feeding with her tube only and trying to get rest. Tomorrow we will have an upper GI procedure that is more feeding under an x-ray, but not painful. They are calling in s special manager of a PICU and NICU IV team to run a femoral line from her groin area to establish an IV for Thursdays surgery. Please pray her respiration and oxygen levels will stabilize as she is on oxygen now. She has been for 24 hours. We will be going home with a sleeping monitor and a feeding tube. We also have to be trained on how to use her monitor and CPR training from a video tape. Caroline has never weighed 6.11 that was in accurate info. She is still just 6.8.
I can not wait to see what God has planned for Caroline's life. She is still holding her own. What a very strong little girl. And what a great privilege it is to be her mom. She still smiles and looks up at us with such a sweet spirit.
3 comments:
Hi Kim, its me Wendy so sorry i have not written, my internet was gone. I just wanted to say that all my prayers are with you and precious little caroline. The Lord is the Lord of miracles, and she will be gaining weight before you know it. I love you all and i hope to talk to you soon love always wendy
Kim,
I am praying for you and sweet Caroline. If you need ANYTHING...we are here. I'll keep calling to leave you messages, just so you know we are here.
Love, katie
Kim and Cam, I was out of town for a few days and a lot sure happened. I'm so glad Caroline is in the hospital having all of the doctors come to her instead of you having to take her from place to place. Remember that Caroline will have no memory of the pokes and prods as she gets older. I know it is painful for you to watch and go through, but any answers that can be gotten from her hospital stay will be well worth the anxiety and exhaustion you are enduring. I hope and pray that you will have more definitive answers soon. I'm glad Sue and your mom are there to help with Carley (I'm sure they love being there and Carley is the center of attention for them). Focus your energies on where they need to be. Have faith in what your doctors are trying to do for Caroline. And when you need a boost, just look at Caroline's bright, smiling face and know that all of this is for her betterment. You are the light of her life right now and you are doing a great job handling all of this, even if you have your doubts sometimes. Rest when you can, give Caroline and Carley kisses for us and know that your wide network of friends and family is there for you even though we can't all be there in person. Love and hugs.
Peggy
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