More Sleepless nights!
Brooke's blood pressure dropping was an issue again Friday night but instead of keeping her awake all night like I did Thurs night we just woke her up for each blood pressure check (about every half an hour). Sat night she did great and did not have to be woken up at all. Her BP was low but they were comfortable with it at least. Tonight they are once again running low and even waking her up isn't doing the trick. She is getting a 2nd bolus of fluid at the moment but as usual it doesn't seem to be working. If she has to get a 3rd bolus and it doesn't work we might be headed to the PICU. She is doing very well during the days (just some minor mood swings) it's just these crazy nights she has. The antibody infusion for this round round ended tonight and we are scheduled to be discharged tomorrow but we shall see. I usually count on being here at least one extra day! Please pray that her blood pressure comes up.
I met the sweetest little boy today who was just diagnosed with NB Christmas Eve. I feel like everytime we come here I am meeting another new NB family. For something so rare you wouldn't know it by spending a day here at CHOP. Last wed when Brooke was having her MIBG scan there were 13 MIBG's scheduled for that day (that is all neuroblastoma). It breaks my heart every time. No one should have to fight this battle... especially children. Please pray for all the little warriors...
God Bless,
Amy
Brooke needs a world wide prayer. Everyone who reads this please list your 1st name and location. lets see how world wide we can make this people
ReplyDeleteMichele-Prayers from Fl
Thoughts and prayers from me to Miss Brooke and her family. You are SUCH an inspiration!
ReplyDeleteMy 18 month old grandson, Brody, is on 24/7 life support and every day he is still with us is a blessing! Following Miss Brooke's challange is proof to me that miracles DO exist and that children are MUCH braver and stronger than I think I could ever be. I end my prayers everynight with, God bless and take care of Brooke and Brody and please take care of ALL of our children.
Cindy W.
Thanks for the update on Brooke. I think of her and the parents often. They truly are an amazing bunch! I will keep them close to my heart and in my prayers.
ReplyDeleteSending prayers up for Brooke and her parents. We appreciate the updates as it can help us be more specific during prayer time. God is there.
ReplyDeletePrayers and God Bless,
Another mom
Amy,
ReplyDeleteI do not know you or your family but i pray everyday for little Brooke. I check my email everyday to see if there is an update on her condition from Caring Bridge. My heart goes out to you and your husband and Brooke. Jesus loves you and many people who have never met you and your family love you too and we are always keeping you in our prayers.
God bless all those little warriors as they are angels in diguise.
ReplyDelete