We were told today that Maggie's failed wean last week may have caused additional injury to her lung. Which, if true, would require another layer of slow recovery. And she's been a couple days holding the same settings on her vent. Not getting better--and though we've had some signs of concern (her x-rays, her CO2 being a little higher) she's not getting a whole lot worse each day.
So at this point, we have been told that this is the crucial week. If she shows that she can improve over the course of the week and wean her settings down, they will be happy. If not, it is likely that they'll recommend a tracheotomy. This would help her (potentially) in a couple of ways, but it isn't ideal (at all). It could possibly help her recover and get home sooner, but it isn't without risks. We'll see. Several weeks ago, she was one bleed away from major stomach surgury--the docs expected it to happen, but she decided to push it to the edge before stopping her bleeding. It saved us a very, very invasive procedure that would have had major permanent consequences. Now, we are close to facing another major procedure--maybe Maggie will decide to get better just in the nick of time again. If not, the trach seems to be the safe and logical decision to help us give Maggie her best chance to recover.
I am starting to struggle with what to make the blog about anymore. Should we be honest and vent our frustrations? Should we just update the medical info? Should we be hopeful and optimistic in the face of extremely scary times? We're not looking for answers--just letting you know that we question how depressed we allow ourselves to appear here. Some families would surely communicate only the positive news....we are aware of our blessings and yet are not oblivious to the fact that Maggie is still in critical condition and does not have a guarantee to survive.
That being said, I am feeling optimistic today. One way or another, Maggie will find a way to survive. She always has, despite having many opportunities to give up. That's not our Maggie's style.
38 comments:
Andy and Whitney, I really admire your parenting style. You have been through so much and have not given up! And neither has Maggie! She is such a fighter and has been one miracle after another! Please know that we are praying for you and Maggie. We appreciate your updates...both the postive and negative. It helps us with how to pray. We love you guys!
Luke and Bethany
This entire blog could be a book. It's a testament to Maggie's sheer determination and fighting-power. Your posts are honest, which is how so many, many strangers have come to feel like they know you.
The title to your blog is perfect: "Maggie's Journey to Healing." Sometimes on a journey you lose your way, stumble, or even fall flat on your face...but then you know you to get back up and find your path again.
Continuing to think about you and pray for you all.
Well, you have to post what it is. Good or bad, you have to tell the truth. I have never been a fan of sugar coating the blogs...and I do believe a lot of families do this, only sharing the positive news. I think you have to continue as you have, depressed or not, and allow your prayer warriors the chance to send up prayers on behalf of your dear Maggie. Try to keep the faith and stay strong. I still think you need to get out of there some in order to keep strong and remain the best possible caregiver and parent. Just like the airplane, you have to put the oxygen on yourself first in order to be able to put it on your child. Still thinking of you all the time. Wish there was something I could do.
Praying that you continue to feel optimistic. We are all impressed with Maggie's style...she's an amazing little fighter...much love to all. K
Andy & Whitney, you need to post WHATEVER it is you are feeling and whatever it is that is happening to Maggie. You don't need to be optimistic and positive if the situation doesn't warrant it. You own your feelings and you need to express them in any way you feel necessary. I am just grateful for whatever tidbits of information you feel that you want to share. My prayers remain the same...healing for Maggie and strength for the both of you. If you are feeling down, then by all means let us know and we will know that you need extra prayers. God is almighty...my prayers for you both and your daughter are constant. Even though we have never met, I feel like I have known you both and Maggie since the onset of her illness because of the wonderful blog you started for her journey of healing. Your strenth is amazing and your daughter is phenomenal. Please don't ever think that we only need to hear the positive..because of God's grace and mercy, we love your family and we want to help you however we can through this nightmare. God bless....!
Jodi Sunday
Sterling, Illinois
Thank you for your honest posts... sharing your true feelings & events I think is vital for yourselves as well as those of us who are praying for you and Maggie. What amazings spirits all 3 of you have. We keep praying for your family & Maggie's total healing. With her fighting spirit & God's amazing grace, we're praying that she truly turns a corner this week in her recovery & does not need to have a tracheotomy. God bless you!
The Moores
Andy and Whitney,
This blog is not for us, but for you and it needs to be whatever you need it to be (if you need to vent, go ahead and vent away, if you need to ask for prayers, we are here to answer), but don't question it. I remember being in the hospital with our son and it was only a couple of days, but I remember feeling so isolated and disconnected from the world and the life I was used to and so I can only imagine after all these weeks what your reality has become. Feel connected and know you are thought of everyday through your blog. But at the same time, don't feel obligated to post merely for us, but when it supports YOU (as a family) in this journey. Don't make it one more thing that you feel you have to do, but something that gives you strength when you feel you have none. In a sense, I feel your blog has become another form of prayer and God does not ask us to hide anything, but to lay it on the table as it is (the good, the bad, and sometimes the ugly). Jesus in his darkest hours also called out "my god, my god, why hast thou forsaken me". Thus, you too have the right to write what you need to get you through these times.
Our prayers are with you,
Stacey, Tomas, Ben and Emily
Just a quick strength restorer (hopefully): my husband is a doctor and his overall impression is that Maggie has a wonderful chance to do just fine.
Sending my prayers and love to your family, Rita in OH
Whit and Andy,
Please know that we will continue to support and pray for each of you no matter what is posted. You are never far from our thoughts.
With love,
The Wolf's
As others have said, I appreciate having access to whatever is on your heart or mind at any given time - medical data, discouragement, hope, exhaustion, grief - it helps me know how to pray, and lets me feel as if I have a real role in your situation. Whatever you write, continue to make it real, and don't try to force something you're not really feeling. The truth will set us all free. Prayers for healing for you all.
There is nothing you could post that would change the way we are all eagerly praying for you and Maggie. Whether it's positive and we are praying prayers of thanksgiving or negative and we are praying for encouragement and healing...whatever the case, we are just privileged to be praying on your behalf. My moto for life is to simply "be real" so that would be my words of wisdom to you. We will be praying for Maggie to pull through once again and surprise everyone. She is an impressive fighter!!! Thanks for including us into your life.
Angie
Dear Maggie,
We are still with you, in prayer, in thoughts, in hope that you will have complete healing.
Dear Andy and Whitney,
Please know that we are here for you - in which ever way you need. I cannot imagine what you are going through and how difficult this must be. I wish I could offer words or other sources of comfort. Know that we are still here with you offering prayer and support.
-Janette
Dear Ones,
As others have said so well, your posts are for whatever you need them to be. We will continue to pray for Maggie and for you no matter what you post, but your posts help direct our prayers to your most immediate needs, fears, and hopes.
Continuing to pray for complete healing for Maggie and thanking God for what He has already done, and praying for you as you watch and pray. Cousin Carol
Post however you feel, whatever you need... then we know how to continue praying. Thank you for continuing to share your raw hearts with us. We will pray continually.
Andy and Whitney,
At times your blog is like reading a journal, you allow everyone such a window into your heart and minds. I know God hears your pleads, and all of us that read the blog pray for healing daily. You are loved, you are truly missed (outside of the hospital) we look forward to seeing you soon! Jess
I went back to your very first post when you started this blog: "Well, I have decided to start a blog of Maggie's healing process. We have had many people suggest this and after thoughtful consideration, I've decided perhaps this is the easiest for all to communicate."
You're right. This is your journal of the process of Maggie's healing. It's not a "good news" report, it's an account of a process and processes are almost always "messy." You're right about this being a way for all of us to communicate. You share your feelings and we pray and we share our feelings and you are reminded you're not alone.
Please keep sharing honestly!
Always praying, Debbie M.
We believe in you two and Maggie! We are certainly on Team Maggie and pray you all the strength and will to get through this together. Maggie's a tough little cookie.
Our family continues to follow your journey. We continue to pray for peace and strength for you and especially healing for Maggie.
It's obvious from all the comments that people love the three of you, whether or not they know you personnally. Post what you feel - if you need to vent, vent; if you need to share the negatives, share those feelings. No matter what you post, all the people who are reading Maggie's blog are praying for her recovery and strength for her parents.
praying for a good week for maggie and for you both. ~mz
You don't know me, however, I received this blog from a friend that asked me to pray for Maggie. I am in NY and I'm sure there are people praying all over this country. Please know that prayer does change things. God is able to do above and beyond that which we would ask or imagine. He is all powerful and we will keep praying. Don't be discouraged if you feel depressed or question at times. God understands all of that. It is also okay to ask God why, that doesn't mean we are doubting Him. It means you want a conversation with God to understand. When I read your blog I can "feel" God's presence in your life. Just keep leaning on the Lord and know He is in control. We'll continue to pray for Maggie and the both of you and especially for the doctors and medical staff, that God will give them wisdom in all of this. Remember Jesus did a mighty work on Calvary for little Maggie. He will never leave her or forsake her. May God bless you during this week, may His peace be upon you and cover you with His precious blood as He continues to minister to little Maggie.
I can't imagine what you are going through, I don't think anyone can unless they have been through it themselves. You shouldn't worry about what to write in your blog, just write what's in your heart at the time. The blog should be a place where you can vent your frustrations & share the victories that little Maggie has in her journey. I will continue to pray to God for her complete healing & for you to be able to get through this trying time in your life. Maggie is an inspiration, she is a strong little one!!
Andy and Whitney,
We have been praying for Maggie for weeks now. We also pray for both of you as well. I really appreciate the medical updates a lot, but I think it is just as important for you guys to be able to share yours thoughts, feelings, struggles, and even depression. Maggie isn't the only one on a journey here! Everyone knows to pray for Maggie, but sometimes we need a reminder to pray for you as well. I know that God is in control and He will sustain you and give you the strength you need to deal with all of this. Whitney, I hope and pray that you are feeling better and will regain your strength quickly. You guys are an inspiration to all of us. We love you in Christ and will continue to lift you up to Him in prayer.
Bruce and Rita (Chatt.,TN)
Writing is catharic.....keep putting your thoughts into words...positive or not...we still pray for Maggie and the two of you.
T.
Like so many others, I appreciate how open and honest you are in your posts.
Always praying for and thinking of the three of you.
Whitney & Andy, We appreciate your honesty with the blogs so please don't change your style. Don't worry about any of us that are reading the posts. We pray deeply for complete healing for Maggie!
deborah
Yes, write what you want and need to write. For reasons well stated by others here.
I will add that it is good to be reminded not only of what your family is going through but also of what so many others are going through all over the world. Not just with cancer but other kinds of challenges and sorrows as well.
And so when I pray for you, Maggie, Whitney, Andy, I am reminded to pray as well for strength for the many others with trials I do not know.
Love and prayers always.
Great Aunt Phyllis
Blogging good and bad helps our prayers to be specific.
I hope that this week will be one of steady improvement and allow Maggie to avoid the need for a tracheostomy. This is Maggie's blog, but in reality it is a blog for all of you. It is a place to feel free to release your emotions both good and bad. Feeling depressed at times such as these is only natural and expected. Don't be afraid to be real. Continuing to pray for recovery.
Karen Cooley
As someone who has been through a similar journey, I can only say that you should write whatever you feel will help the three of you the most. It can be therapeutic to vent sometimes, so do it for yourself if that is what will help get you through these hard times. Don't worry about those of us "out here"; we are here to support you regardless.
Love and prayers,
Monica Miyashita, Mom to ^Liddy^
Be you. Post what you need to say. This blog directs and guides my prayers; however, the prayers will continue in earnest even if you are struggling to find words or are just too weary to write. Love to all of you. Praying, praying, praying...
I echo what everyone else has said....if we were in your circumstances, feelings/emotions/frustrations would be right there. We can't imagine all the ups and downs that you have experienced -- but we know the Lord continues to be with you through every step. You may not always feel that, but that's OK, because the we see how God continues to give you HOPE in the midst of VERY DIFFICULT times. We so wish there could be something we can do to ease your hurt, and we continue to come back to prayer. We check your blog daily because we know we will see how Maggie and her parents are doing. We wouldn't expect any otherwise, comparing yourself to how you "think" you should be reacting or how others might react is Satan doing his work....you feel the way you feel because of the difficulty of Maggie's condition...and there's nothing wrong with how you are feeling. God loves and cares for you deeply in your brokenness, anger, frustration, feeling depressed...He is right there with you no matter how much you feel it...we will believe it for you, God is with you and all things are possible with God....we keep believing that for little Maggie and for you and Whitney.
Love and deepest prayers,
Kendra and Eric
Dear Andy & Whitney,
I am so impressed with the strength and resilience of your "support team". In case you didn't notice, glance back over these previous 31 comments. Not one person suggested that you try to "sugar-coat" your blog. No one seemed to shy away quietly. They all encouraged you to tell-it-like-it-is. That's what you have done all along. It shows you're human, that you realize the importance of relying on God and prayer, and that you get tired and discouraged. We have come to expect that honesty from you -- to be real. Don't change now. We want the facts (with explanations for us non-medical people who don't understand the terms or stats). And we want the pros and cons of what the future may hold. You have real prayer warriors on your side! Lean on us a little harder when you need to -- and know we'll realize the necessity for praying a little harder.
I have often wondered what kind of totals you would get if you went back and just added up all of the responses since Feb. 27. Obviously some comments are from people who have written before, and some people will not write at all. But some mention their whole Bible Study group, or Sunday School class, or entire church are praying for you. Could you easily "guestimate" that each comment on the blog possibly represents 50+ prayers? Maybe 100+? There's power in numbers and (as you well know:) power in prayer. I'm guessing sometimes your minds become numb to some things as you try to process all that is going on. Look back at the numbers, reread the last 2 days' comments (or more) encouraging you to keep right on sharing the good and the bad. If you have to handle it, we have to pray about it! That is a promise that won't change.
If Maggie still has the strength to fight this -- then you and we will too. We couldn't do any less -- and neither will you. We will promise you and Maggie that we will "Keep the FAITH".
Linda
Praying for a good week with Maggie getting rid of that tube!! Breathing beautifully on her own!! Also praying for you two as well. Lean on the cross. Peace to you and in His hands.
DEAR ANDY AND WHITNEY,
WRITE ANYTHING YOU BOTH WANT TO. IT IS VERY THERAPEUTIC FOR YOU BOTH! PLEASE KEEP US INFORMED ON ~SWEET MAGGIE'S~ PROGRESS AND MEDICAL INFORMATION. IT LET'S US KNOW SPECIFICALLY WHAT TO PRAY FOR.
I WILL WRITE MORE LATER OK...
WARM HUGS WITH LOTS OF LOVE AND PRAYERS TO MAGGIE AND TO YOU BOTH.
LOVE, TINA AND BILL
P.S. BLOW MAGGIE A GET WELL WISH FOR ME AND A HUG TOO! :)
Andy and Whitney...please continue to blog! This is our way of being in tune with your feelings, good or bad, happy or sad. God did not promise any of us that a Christian life would be the easy road. We, your Christian friends, stand with you in full support. We pray for Maggie and the two of you often throughout the day. We too weep and are sad for the recovery scenario that Maggie endures daily, ever changing. A blog is something unique to each person in any given situation. This is a prime way of letting all of your prayer warriors know what and how to pray for Miss Maggie. Love and Hugs, Larry and Sue Archer
This is your blog, you should write what YOU want to write. Those of us who check in to keep up with Maggie's progress should only be thankful that you take the time and effort to leave the info that you do. If it helps you vent away.
Will continue to lift your family in prayer.
Your honesty is so refreshing and what keeps up rooting for you.
GA in VA
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