Grandpa Brian said last night went really well. Charlie fell asleep around 11:00 and didn’t wake up until 5:30. The nurse assessed him and then Charlie took a nap in Grandpa’s arms for a couple more hours. He didn’t have any more seizures and we still haven’t received the venting g-tube so it looks like we will be here at least throughout the weekend. Im getting bits of the story with the tube. I guess the hospital does not stock this item, possibly because it is new or rarely used and they would need to buy a case of 30 which is $500. Currently the hospital only needs two (one for Charlie and one for another pt in the PICU) so they have asked for 2 samples to be sent. Dr. Jackson called Material Management on Friday April 11th. Materials department called the floor on the next Monday to verify to order it and were told we no longer needed it. A few days later it was realized we were in fact waiting for the tube and it was ordered either Thrursday of Friday last week. Now for the kicker...it takes two to four weeks for delivery and there is no way to track it!!! So if that is true the soonest we would expect to see it would be a week from today. I'm not sure that Terry Such-Neibar realizes this part of the story because she told us Monday that she expected it to be here Wednesday. When I see her in the morning I'll try to clarify everything and get to the bottom of the story.Since stopping the Miralax yesterday Coop has been crying less and sweating less. Maybe now that his sweating has decreased we can start dressing him. We just got back from PT where he was pretty upset so he didn’t do very well at trying to lift his head. Because he was mad already we tried the stander again and he was bugged but not totally ticked off. That has been our day so far.
16 comments:
Charlie looks FANTASTIC in that first picture. He looks so bright-eyed!
I know you have heard this already, but thank you for sharing your little boy with the world. He is so beautiful and sure teaches us strangers a lot, with out you even knowing it. You parent's are quite extraordinary in how how possitive you are. What an example to the rest of us. Charlie, and your other son, are very lucky boys to have you. We pray for Charlie daily, and have been since coming across your log in Feb. Good luck Charlie we think of you everyday! Keep on fighting little man!
A Friend!
Well I really hope they get things straightened out so that Charlie will be able to be home on his birthday. I hope tonight is a good night. Love and Prayers.
The Woolstenhulmes
Wow, that pic with his g-pa is awesome! If I didn't know any better, I wouldn't think anything was wrong. We're still hoping and praying for you Charlie, keep fighting!
He looks awesome and hooray for no more seizures! Love and prayers!
rox
I love you Coop. Good night and I hope all goes well. We will pray for you tonight. Sleep tight my angel.
You have an amazing family. After seeing your story on KSL, I can't help but be in awe at your strength. Charlie is a trooper and the sweetest little baby. His big brother is right there with him. May you feel the blessings offered by everyone that has heard your story and may you have peace and feel His healing power. Charlie looks so cozy in his grandfathers arms. That is priceless. Will there be many non-family members running the 5k with you for Charlie? Best wishes for your family. We're all praying for you.
What a precious baby boy. He is just absolutely darling. Thank you for this blog. I check it everyday and my heart goes out to Charlie. He is in our prayers and even though we don't know him and your family, we love you...He has touched our lives more than you can imagine. God Bless! And look forward to hearing about more of him tomorrow.....love, the paddock family in CA.
I love the picture with his grandpa. He looks so cute and so wide eyed. Those standers can be pains but they do help them.
I still say go with the GJ!!!!
Good Morning Charlie!! I am glad you had some great special time with Grandpa Barlow. You look awesome in the stander. Being in one is not always fun, I know . you have a lot of people cheering for you!Shyla
Charlie looks adorable in that picture with his grandpa. I love to see his eyes wide open. Hope you guys get everything figured out and can take little Charlie home in time for his 1st Birthday!
Love & Prayers,
Diane & the boys
Speaking of Limbo...I miss Rob's posts. Don't misunderstand me the other people who post on here do a magnificent job! But Rob provides a descriptive spice that is both amusing, disturbing, cutting edge, classical, and white trash all rolled up into one smothered burrito! Basically, this is a message to Rob saying I really want him to get home to his boys and wife! And if he gets a moment this weekend, to take some time and jot a short epistle containing either some random thoughts, experiences from this week, or updates that will hopefully cause me to shake my head at the monitor, and giggle out loud for the entirety of next week.
amen troy.
I saw the story about your familly on the news. I can't describe my emotions after looking at your blog. Charlie is absolutely beautiful! We have a two year old with lissencephaly and it has been a long road. My heart goes out to you during this time. Primary's is a wonderful and terrible place to be all at the same time. I admire your positivism and the tender love you clearly have for your baby. Best of luck!
his eyes look fabulous...he is such a doll!!!
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