I am sitting here staring at Brooke's monitors...watching her pulsox continue to dip down to 90% (under 90 and she gets put back on oxygen again)....watching her heart rate keep climbing (currently 143)...how can I go to sleep??? Brooke has had a mildly rough day but an increasingly difficult evening. She has been having severe mood swings all day but much worse between 8pm-11 when she also broke out in horrendous hives all over her tiny body causing her so much discomfort to the point that they stopped her infussion for a couple of hours to try to get the hives to go away (which has helped). I noticed at about 10:30 that both her pupils were very constricted even in the darkened room and they weren't responding to changes in light/dark (hers are typically very large even in daylight). The resident on tonight thought it could be caused from the additional benedryl she received for the hives and or the morphine she is getting for the pain but was going to contact the Fellow on Call to be sure (haven't heard back yet). Her skin is clammy and her head is very warm but has not reach the point of a temp.
I keep having to remind myself "20% increase chance of survival, 20% increase chance of survival (what this clinical trial will hopefully give her). This is what keeps me going when I watch her having to go through all of this. As I am writing this her pulsox is dropping under 90% and the nurse just arrived and she is trying her on "blow by oxygen" (resting the oxygen mask a couple of inches away from her nose/mouth and letting the O2 blow by instead of using the nasal canula)...seems to be working at the moment but now her temperature just jumped up to 104 (I'm assuming another call to the dr.). It is now 2:00am and the nurse just returned to tell me the resident ordered a chest xray so they are bringing up a portable xray machine sometime soon. This is going to be a long night...
Please pray for Brooke this week. She said the most beautiful prayer tonight before she finally fell asleep. Listening to her pray is my favorite part of the day. She prays for so many others and I love when she prays for herself she says, "...and please help me, Brooke, to..." (as if God does not know her name)! I tell her all the time that He knows her better than even I do but still she always seems to want to be sure!
Rob forwarded me the most amazing video Christmas card for Brooke last night that I read this morning. It is from The Michael Job Center for Orphan Girls in India and I wanted to share it with everyone. Please take the time to watch the video (I believe it is about 5min and worth every second). I am touched beyond words that these precious little girls with all that they have been through in their own lives are praying for Brooke and closely following her journey (you can even see in one of the video clips my journal update from last week posted on their wall). Please pray for these little angels and if you want to know more about the Center I have included a link to their website.
Utube Video Christmas Card for Brooke:
A Video Merry Christmas Card to Brooke Milford
The Michael Job Center for Orphan Girls:
http://www.michaeljobcenter.com/index.php
God Bless,
Amy
DelMarVa's Premier Source for News, Opinion, Analysis, and Human Interest Contact Publisher Joe Albero at alberobutzo@wmconnect.com or 410-430-5349
22 comments:
hopefully it is just the morphine, i had the same problem once.
My thoughts and prayers go out for this beautiful little girl. The strength she has shown during this last year is amazing.
Deb
May God bless you and Brooke. My heart breaks for you as you watch your most precious gift go through this. My prayers are for you to stay strong for Brooke and that Brooke recovers soon.
Hang in there Kiddo. You will survive this yet. Your thread has not been cut, so time is on your side.
Hang in there Brooke. You are a tough little girl. God Bless You. I will keep you in my prayers.
Umm, thanks. That's 2 minutes of my life I'll never get back.
Amy, Brooke has long been in my prayers and will certainly continue to be. So, too, are you. God will surely continue to give you the strength you need to be there for and with her.
You know, every time I start thinking I'm too "old and crusty" to cry, something brings tears to my eyes. Your post did - and I thank you for that.
Amy, I wish there was something I could say or do to ease your pain, to ease your fears, to somehow comfort you in all your struggles along with the stuggles of your family. I pray that God will give you the peace that passes all understanding because I am not able to find the right words for you now. Trust me, hundreds of us are praying for your whole family. Much love from someone who cares in Berlin
8:09 Why did you feel to leave that comment? What the hell is wrong with you? It would be nice if that every minute of your life you couldn't get back by writing a thoughtless comment, Brooke had added onto hers. Your a jerk.
I agree 10:11, but don't worry - that person will be repaid for that comment. (Karma).
8:09
What an asshole you are. It must be miserable to be you. You worthless piece of F*ckwod.
8:09, I don't understand how you could even think such a thing after reading about this precious child - let alone write it on a public forum for all to read.
But you know what? I'm glad I can't understand it because, if I did, it would mean I'm thinking like you. If that were the case, I'd do the world a favor and jump off the nearest bridge [hint...hint]
May God continue to bless this family. Brooke is sure a fighter and I pray this little setback will end soon. Don't let the few negative people affect the rest of us. They will be taken care of in time. Patience.
Joe, since you moderate comments, 8:09 needs to be removed. Amy certainly does not need the hate spewed by someone who has no clue what she's going through.
Hang tough, Brooke! We are thinking of you!
Any Update today Joe?
I cannot imagine this families pain. I am praying for this precious child. Please Lord give this child the chance at a normal life.
Susie
This little girl gives me inspiration every time I see one of her updates,she is amazing and strong beyhond belief.It makes me cry everytime and makes me apprciate the things that i usually take for granted she is a fighter and will win this battle.She is definatley in my prayers and will continue to be everyday.
Amy, as a Mother I cannot even imagine
the pain you feel in watching your
precious daughter go through such
things. I consider it a privilege to
lift Brooke, Rob, and yourself to our Lord for strength, healing, and comfort. I'm also praying for wisdom
and tenderness for the medical team.
God is still in control.
Blessings,
Susan
Reading about Brooke makes me realize I need to stop whining about petty things in my life. She is putting up such a battle, & many of us do nothing but complain about our lives & circumstances. What this little girl wouldn't give to have just one normal, pain-free day. What her family wouldn't give to be free of this terrible curse. Thanks for making us aware of their plight - may we all count our blessings and be grateful.
Thank you, Brooke, for your inspiration. I will try to be a better person.
Brooke, Amy, Rob and family - you all are in my thoughts and prayers. Brooke, you are such a strong little girl with a heart that is bigger than many adults - keep fighting and keep the FAITH!
There can be no pain greater than to hold your baby in your arms and not be able to help her. Oh Amy and Rob I pray for you for strength and courage to stay strong for this little angel. So many people are praying and crying tears to God for litte Brooke. Brooke keep fighting for God is going to use you to prove he is still in the miracle business. Oh do remember even inyour pain to thank God for parents as you have..Little Angel we pray for you.
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