We had to put the NG tube back in this morning. She just won't eat and we can't get all the meds in her. She is very pale so hopefully that's from not getting enough nutrients. Since there has been so much that has happened to her body in the past month, Mark and I are hoping to just get a summary of all of this (meds increased doses, meds added, new diet, the shock on her system the surgery has apparently had, and the post op complications). So much has been changed, we are concerned that maybe they (the doctors) have done too much all at once? She is so sedated now, it feels like we are taking steps backwards again! The problem is when things got so bad at Vandy, they added so much in a 24-48 hour period, we don't know what is causing what side effects. Equally, we don't know what is working and what is causing problems. We also don't know how much of her complications are caused by the thalamus blood flow problem, and we're not sure how to determine this either.
So, just pray for wisdom and understanding for us so that we can address these problems with her doctors. We just feel like there are times where our "gut feeling" about our daughter and what is happening is correct. If we don't bring up the issues, there's a good chance the doctors aren't thinking about them either!
We had a friend who wanted us to post the address here so they could send a card and she felt like others wanted this info as well.
Childrens Healthcare of Atlanta at Scottish Rite
1001 johnson ferry road NE
Atlanta, GA
30342
room 366
Summer, as I said to you once before, you know Lettie better than the doctors do...if your gut tells you something different, bring it up. I'm praying so hard for Lettie & all of you.
ReplyDeleteLeaAnne Dollar
This blog may be an outlet for your emotions (and that is good) but it is also a way for you to witness to SO many people and affect their lives. Not to mention all the extra prayin' that is going on!! You continue to be in our hearts & thoughts!
ReplyDeleteYes ask, bring up & point out anything....you're her advocate! I'm inspired by your faith & strength & unceasingly pray for Gods guidance to clear answers. I'm sorry it's been so up & down but everything you say is true....God is keeping them on their toes. May He continue to give you the strength, grace, peace, insight & guidance that only He can provide.
ReplyDeleteLove in Christ,
Gina
Summer and Mark,
ReplyDeleteI'm praying for wisdom and understanding to all the questions re: Lettie's health, for the doctors, and for you and Mark as well. God, please be with this precious family as they search for answers to all the questions no one seems to have answers for. Lord, lay your healing hand on Lettie, let her feel your love, grace, and healing power. Lay your hand on Summer and Mark, give them understanding, faith, encouragement, and a feeling of peace that they can stop worrying and know w/o a doubt that you will be there with Lettie through all of this. Thank you for all your many blessings throughout this journey with Lettie. In your Holy name. Amen
Valerie Allen
I have not been able to check the blog in a few days and was soooo hoping to find good news when I logged on. I am so sorry things are not going well. I talked to your mom a long time the other day. I am praying for all of you and my heart breaks for your struggles. I will continue to pray until Lettie is well!
ReplyDeleteYou are Lettie's advocate and you know your daughter best. You have every right to bring up her care or what is going on. You are her voice right now. I commend you for standing up for her. If you don't who will.
ReplyDeleteSummer your gut instinct is a God-given discernment He gives us parents in order to take care of & protect our children. You go w/ it! Can't tell you how MANY times as a nurse I've seen this...parents are almost never wrong! You & Mark are incredible advocates for little Lettie. NEVER be afraid of stepping on someones toes by asking ?s or telling her medical team what y'all are observing w/ Lettie. The two of you know her better than anyone & you're a great resource to the Drs & healthcare team. Praying fervently for God to give the Drs wisdom & clear discernment & give you & Mark very clear answers. Thank you for posting the address! My 3 boys wanted to send Lettie something but didn't have an address. With nonstop Prayers~Lisa C
ReplyDeleteHey Summer, We are keeping you in our thoughts and prayers and ANYTHING you are feeling is normal and quite a l r i g h t !!
ReplyDeleteAfter you settle in there and build confidence in the new staff,etc...you will be more at ease.
Catch naps when you can and take one day at a time.
Love, Bucky and Katrina
Praying....p. brown, Knoxville
ReplyDelete