I am a mom of a cutie pie (very biased). And I wanted to share my experiences with others (including my cuties grandparents, great-grandparents, numerous uncles and other relatives). I love being a mom and can't imagine doing anything else.Day +73
We have not had much sleep lately. I was trying to figure out why and so i sat down and wrote out her meds schedule...now I know why we aren't getting any sleep.
Here is our med schedule...or at least what it was before I talked to our nurses about it today and got it all changed.
Noon- Hydralazine and BP (blood pressure)
1 pm Methyloprednisolone
2 pm BP
3 pm
4 pm Cyclosporin, Hydrolazine, BP
5 pm
6 pm Propranolol, BP
7 pm
8 pm Lasix, Hydralazine, BP
9 pm Norvasc (oral), Methylprednisolone, Prevacid (oral), Penicillin (oral)
10 pm Caspofungin,Dilantin, BP
11 pm Cefepime
Midnight Cyclosporine, Hydralazine, BP
1 am
2 am Propranolol, BP
3 am
4 am Hydralazine, BP
5 am Methylprednisolone
6 am BP
7 am
8 am cyclosporin, Lasix, Hydralazine, BP
9 am Acyclovir, Prevacid (oral), Norvasc (oral), Penicillin (oral)
10 am Dilantin, Propranolol, BP
11 am Cefepime
Now all of these meds don't take a minute or two. Some run for up to 2 hours. So there is always someone in and out of our room.
This week our transplant doc is on service. She is a doc we have really grown to like over the last year. She has really stepped back and looked closely at everything that is going on with Alivia. She wasn't holding her cyclosporin level at a thearaputic level so our previous doc was changing her dose every single time she had to take it (3 times a day). Our doc now is observing closely what is going on and letting Alivia's body regulate itself. It seems to be working as her levels are almost exactly where we need them to be. Livi's renal functions are still not noraml. So our doc ordered an echocariogram to make sure it wasn't congestive heart failure (which its not..thank God). Her potassim levels are too high and she is acidodic (too much acid in her body) because her kidney's are dumping acid into her blood which makes her throw up a lot (Four time over night) . She is off of IV nutrition (which is good for her kidney and liver). There may be more kidney damage than we realized but kidneys are good at healing themselves. She will be getting a kidney sonogram tomorrow to see how bad things are. She may need another endoscopy to see if there is some sort of infection that doesn't show up in her bloodwork and to see where the GVHd is. We stopped the stem cell treatment (the experimental one) because we are not sure if it is helping or causing all of these problems. Also her stooling wasn't getting any better with the therapy so why continue. The fear is that her GVHD is resistant to all treatments and I"m not even sure what that means but its not good. It has been an overwhelming couple of day. On top of this she is teething in a big way and has been chewing the insides of her cheeks until they bleed.
I'm not even sure if this message makes sense but that is most of the info we've been bombarded with the last few days. We desperately need a miracle. At this point we are just glad we don't have to be in the ICU. Pray for healing. Pray for a miracle. This is all scarier than ever and more intense. Each day it seems to get worse not better.
posted by Alivia's Momma @ 1:05 AM
52 Comments:
I'm at a loss of words. My heart aches at all you are enduring, especially your sweet baby. I will not stop praying for her. I pray her miracle comes soon.
I can only imagine how overwhelmed you must feel. I am praying for the healing - for the miracle - that your hearts so long for. God bless all of you.
Cathy S.
You have been so heavy on my heart the past few days...now I know why. What an overwhelming burden you all carry.
YOu are always in our prayers.
Love and miss you,
YOders
Our hearts are going out to you and we are continuing to pray...
Meghan Mellinger
Still praying.
Love, The Plains
Still praying for you all in the midst of this ordeal. God will grant you the strength you need to continue. Continue to press into Him in all things.
Lynn
It's a wonder you can get any sleep at all!
Dear God,
We need a miracle for Alivia. We will keep asking, knocking and seeking. We know that You are a good God who loves His children. We know that You reward those who seek You. Please, Lord, hear and answer our prayers. We trust in You, Lord. We know that You have a plan; that You are in control. Please heal Alivia, Your little lamb. Heal her completely, Lord. We ask in Jesus' name.
Still praying!
Mary Ann K.
Praying that the Lord will uphold you all in the midst of this raging storm...praying that He will miraculously work in Alivia's body...praying for wisdom for the medical team -that they would know what is going on and change treatment/meds as needed.
You are being lifted up daily by our family.
Blessings,kathi
Emily,
You are so strong to even keep writing this. I am praying for Alivia daily and of course, James and you. Take care friend,
Steph C
I can't imagine your need, but I pray to the one who does.
Eph 1:16-25 "I do not cease to give thanks for you, remembering you in my prayers, that the God of our Lord Jesus Christ, the Father of glory, may give you a spirit of wisdom and of revelation in the knowledge of him, having the eyes of your hearts enlightened that you may know what is the HOPE to which he has called you, what is the IMMEASURABLE GREATNESS OF HIS POWER toward us who believe, according to the working of his great might that he worked in Christ when he raised him from the dead and seated him at his right hand in the heavenly places, far above all rule and authority and power and dominion, and above every name that is named not only in this age but also in the one to come. And he put all things under his feet and gave him as head over all things to the church which is his body, the fullness of him who fills all in all."...that is the one who I ask to help you.
Love~Beejee
Emily dear, Praying with heart full of love. Marmie
~ I am praying for HEALING ~
+ Blessings TO All +
Phyllis
oh, emily my heart is so burdened for you all. i am overwhelmed to tears. i continue to pray for healing and among other things for you to know God's nearness through this suffering.
sending a hug and my love,
april stoltzfus
I cry aloud to the LORD; I lift up my voice to the LORD for mercy.
I pour out my complaint before him; before him I tell my trouble.
I cry to you, O LORD; I say, "You are my refuge, my portion in the land of the living.
Listen to my cry, for I am in desperate need...
Set me free from my prison, that I may praise your name. Then the righteous will gather about me because of your goodness to me."
O LORD, hear my prayer, listen to my cry for mercy; in your faithfulness and righteousness come to my relief.
Answer me quickly, O LORD; my spirit fails. Do not hide your face from me or I will be like those who go down to the pit.
Let the morning bring me word of your unfailing love, for I have put my trust in you.
Ps. 142, 143
Emily, James and your families
We are praying continually for you and for Livi, for your doctors and nurses. We know we are among hundreds of people crying out to God to pour out His mercy on Livi in the form of complete physical healing. We are praying for endurance for you that could only come from God's amazing grace. We are assured that our Father is not deaf to our prayers on your behalf and we await to see the "goodness of GOd in the land of the living", knowing this is not the end of the story. We are praying God will act quickly and not prolong this time of suffering and trial any longer than is absolutely necessary. Please, Lord, have mercy.
love you much, friend.
Emily,
I don't know quite what to say, but these verses came across to me last night...may they bring comfort and hope to you as they have to me...
2 Corinthians 1:3;8-10
Blessed be the God and Father of our Lord Jesus Christ, THE FATHER OF MERCIES and GOD OF ALL COMFORT, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.
For we do not want you to be ignorant, brothers, of the affliction we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. He delivered us from such a deadly peril, and HE WILL DELIVER US. On him we have set our hope that HE WILL DELIVER US AGAIN.
Emily,
This week Aidan started wearing his Livi bracelet on his ankle so "it never falls off & he always remembers to pray for Baby Livi". She is in all of our hearts, God has even placed her in the hearts of the little children! What a blessing! We are praying for you!
Love & Prayers,
The King Family
Praying for the miracle to come soon. Thanks for the updates even though so much is going on.
Miss you so much friend,
The Spinetti's
Praying and thinking of you guys. Your continued strength to endure this trial amazes me. I hope that miracles will rain over you as you turn corners and that the finish line becomes visible. Love you Livi!
GAL
My prayer is this:
God, please heal Alivia today. Father, please don't let her suffer anymore. Give Emily and James the strength to go on, and peace in their hearts when fearful thoughts strike. I pray that you would bind the hands of the devil, let him be gone. Fill Alivia's hospital room with Angels that will hold their hands against her. I lift Alivia's body up to you and ask that you would heal all of her cells from the inside out. I pray for an unmistakable miracle. Please be near the Haughery's today. I ask this in Jesus' name. Amen.
I BELIEVE that things will take a turn for the better. Much love to you, Leslie Malito
We continue to pray for healing for your sweet girl and wisdom for the docters
Still praying for the miracle to come.
Peggy
Praying for a miracle-
Kim's
Dear Emily, My heart goes out to you and I want to cry. I can't even imagine. We will continue to cry out for a miracle. Just because God hasn't healed her yet does not mean that the answer is no. I love you in Jesus. Be encouraged. He is faithful. Love, Janet S.
I'm praying for all of you. I can't imagine the fear and exhaustion. Everyone is pulling for little Livi. You've been through so much the miracle has to be right around the corner!
Natalie M
Please know that many prayers are raised to the Great Physician for you and your dear little one. Our children pray daily for Alivia.
the Kurtzes
We love you all, and we're ALL praying at our house. ..."The eternal God is your dwelling place, and underneath are the EVERLASTING arms". He's holding you, and won't let you go.
Much Love,
The Weavers
Oh, your message makes perfect sense, and we continue to be in awe of your perseverance.
A miracle is still #1 on our Livi-list as we petition the King.
wow emily, praying for strength & hope and definitely praying for that miracle. much love.
Please know that God is with you. And that you are prayed and cared for. God bless,
We are praying for a miracle!
Calvettis
We are praying for you everday.
Pamela Bueche
praying!!!!!!!!!!!!!!!!!!!!!!!!
Dear Livi and Family:
I find myself thinking of you all day. I've shared with my family the importance of praying for Livi's health and for her parents' strength. I continue to ask God to give such loving, devoted parents the greatest gift of all -- a full recovery for their little angel.
Miracles happen, and grace exists. Miracle or not, Alivia already has a savior.
I am so sorry you are going through this. I admire your strength and faith and continue to pray for healing and strength. You are a great mom!
I love you
Margot
we're petitioning the Lord for complete healing here. amazing the grace and perseverance He has given to you all. we keep praying, and know God is good. The Lotinskys
I continue to pray for Livi, your family, and the medical staff that is taking care of Livi.
Kristen E.
I am and will continue to pray for a miracle for that sweet, adorable, cute and precious little livi!!!!
Love,
moriah
"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." Matthew 11: 28-30
"we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope"
Romans 5:4
praying hard for little alivia and u guys cause that must be crazy hard. but like the verses say God is going to sustain you and HE is going to pull u through this even though right now it seems like there is no way. there's also this song that i love by Chris Tomlin called "This is Our God" and one of the lines talks about how He is a refuge for those in the storm and that He will wipe away your tears and return your wasted years. All this to say that it may feel like all this is for not and that nothing good could ever come from this but God's got u all and HE will hold you strong. Def. recomend "This is Our God" for you guys cause it is a great source of encouragement. Keep fightin Livi, you can do it little girl : )
made to worship,
rachael
I enjoyed visiting last night. It was the highlight of my week. It's always a pure joy to be in the same room as Alivia, even if she is drugged up. Emily, I noticed how you are doing a GREAT job being a comforting mother to Livi, even after 2.5 months of the hospital schedule. Jamese is working so hard for both of you. I can't wait till you can get back home. The Lord created Alivia's body. He is able to heal her from this GVHD.
UNcle John
Emily,
I'm out here in California praying for miracle for you and Alivia. I wish I could atleast give you both a hug, since I can't I'm sending this to you "As a mother conforts her child, so will I comfort you. Isaiah 66:13.
My prayer for you is that when you feel at the end of yourself, i.e. your strength, your ability ,you still have hope because you can feel God's presence.
love you,
jallen
Dear Emily, praying for Alivi this morning as I worship ... I don't know what hospital life is like, don't want to know :) ... but, perhaps, if you could spend some time in worship to music, (if you aren't already) God will meet you there. It is so obvious His sustaining grace upon you and Livi. He is sustaining you. I believe that all of us 'Livi prayer warriors' are amazed at the grace of God upon your life. It is truly awesome. Love, Janet S.
We are continuing to pray for a miracle and that you are granted continued strength to endure all that you are going through. Love to all, Betsie
We are still praying for you every night.
Melissa Stoltzfus
The ESV verse for today is: May the LORD give strength to his people! May the LORD bless his people with peace!(Psalm 29:11) I pray this is true for you today.
Kathy S.
Emily,
My heart ached and I was brought to tears as I read your update this morning. I am praying and asking God, the only one who knows, to heal Livi. He is the only one who can comfort and give your heart peace as you trust His faithfulness and Truth. As you go through your day and the crazy schedule, He is with you in each moment. I don't have the words, but His everlasting word it true. Always on my heart and in our prayers.
Love,
Denise T.
You are so strong. The Thompson clan is still praying for you all.
I'm praying for you and I love you tons.
Maureen
Please know that we are praying for you. We can only imagine the many temptations that press upon you all. Psalm 56:3-4 says, "When I am afraid, I put my turst in you. In God, whose word I praise, in God I trust; I shall not be afraid. What can flesh do to me?" David later says in verse 8 "you have kept count of my tossings, put my tears in your bottle. Are they not in your book?" This verse has helped us as we think about the Lord's tender care as He collects every tear and counts every tossing (I think of it as the sleepless nights). Verse 9 says, "This I know, that God is for me." Alyssa, and I just prayed these verses for you all and that God would draw closer to you and that He would heal Alivia. God be with you!!
Lou, Lisa and Alyssa Gallo
Emily,
We spent a good portion of our time during caregroup to pray for you, James, & especially for healing with Alivia! I hope today goes well for you & that you all find joy in something today because Jesus loves to see you smile even when these days are the hardest right now! Keep expecting that miracle to come because in God's timing it WILL! Our thoughts really rule over our lives so keep thinking happy, positive & cheerful thoughts! God bless you richly today!!
Love,
Hannah, Scott, Tirzah & Naomi Byers
The Parmers are praying fervently.
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