Other than the exciting morning vomit, Maggie had a fairly quiet day. She was awake some, but didn't get overly agitated. Her port was again accessed because she is getting TPN again. She had physical therapy, where they tried to work out her legs. This ended up making her pretty upset and she cried. That was the end of PT. It was decided we will not continue until Maggie can tolerate it more, so they will try to position her legs to give her the best possible hip/leg support. She currently is very content to lay in a "frog" position, which could lead to stiffness over time.
They have made some changes to Maggie's vent settings as well today. I don't believe they felt very confident in the changes that were going to be made, as Maggie's CO2 had climbed overnight, but they tried anyways. She has adjusted well to the changes in her pressure & oxygen levels. We hope this is a sign that her lungs are getting better.
We have seen small signs of improvement today, which we are happy with. In the last few days, we have grown quite weary of our situation and the time we have spent watching Maggie. It is hard to see her awake and flailing about due to sedation. It is hard to watch her cry. Again, it's hard to not be able to comfort her when that is really what she wants and needs. We have become a bit impatient waiting for her to get better and I think this affects our psyche sometimes. If we can continue having days that we had today (minus of course the vomit), we can handle it.
Please continue to pray for our Maggie.
17 comments:
Just wanted to let you know many people you don't know are praying for your little Maggie. I know of her through your friend Katie, we ran the Disney marathon together. I wish you well and hope everyday you can find the strength to get through these hard times. I will continue to check back and also the prayers. May God be with you.
Thank you Dear God for a better day. Please continue to heal Little Maggie,and give her dear parents and family peace and hope.
With Love and Well Wishes from Tennessee. Will continue to pray
for you all.
Hooray!!! Though still hard, today sounds better, and perhaps the docs will be a little more attentive to your opinions. You know, everyone in healthcare says they put the patient first and that parents know their child better than anyone else, but its difficult when you get into a rythmn, usually deal with parents who don't have much medical knowledge and (from the provider's perspective) don't see the big picture. Your advocacy for Maggie has made such a difference. Our prayers continue every day. Hope you and Andy get some sleep tonight
Pam and Dick
So glad to hear that today went a little better. I think about you guys and pray for you daily...and I will continue to do so.
love,
Donya
Precious Maggie,
We pray that you will have a good day tomorrow as well. That you will be able to tolerate all the changes and that you will not vomit again. We pray for you often throughout the day. Hugs to your parents and Kisses to you.
Love,
Larry and Sue Archer
That's our girl - if the docs won't listen to your mom and dad, you show 'em! I'm so thankful for Maggie's wonderful spirit!
Debbie M.
Praying that maggie continues to heal in the days ahead ~mz
Thanks for continuing to update, we in Dayton are always wondering how little Maggie is doing. Keep advocating for her, mom and dad know best!
We are all thinking of her and praying and hoping for the best for Maggie. She has proven to be a fighter, keep fighting with her.
Jessica Whitlock
Still checking in on you guys everyday. Sorry I haven't posted in a while. I can sense and feel your despair. But thankfully, she has made it through the worst of this and you will be taking your Maggie home with you. Now your patience will be tested, before it was your strength. You guys can do it and you will. Your devotion is awesome. Thanks for keeping up with the blog as it means so much to us all. Love and prayers to the whole Bixler family.
Easter is almost here.
Light and hope after darkness.
Love and prayers always.
Great Aunt Phyllis
Hooray for a quieter day! Praying for your little Maggie and the healing that needs to take place in her body, as well for the two of you during this time of waiting and watching.
Thanks for the blog- it helps us know what to be praying for and what to be thankful for!
Prayers and hugs from "the Burgh"
EMB
Keep voicing your knowledge of your daughter to the doctors! Thank God...no blood when she got sick....Why can they not put her in your arms and let you rock her? How do they "know" that would not be the best medicine for her... Hold on dear parents...Maggie is making your thread stronger! I will continue to pray.
T.
So glad that yesterday was a better day despite the vomiting. Praying that today will also be a good day, with only pleasant surprises, so that Maggie can continue to recover. Praying for you, Whitney & Andy, each time I pray for Maggie. Love from Cousin Carol
praying, always, praying
Hooray for Maggie and all of you! She is handling the changed setings and that is great! I willcontinue to pray!
Susan D.
You don't know me, but I feel like I know your family a little bit. I was directed to your blog by someone I know on facebook. I feel I know you because I have cried along with you as you are going through these things with your very beautiful and precious little girl. I have been praying for her and I hope that God's healing hand is upon her and she will get to go home with you soon. May God's blessings be upon your family.
-Hugs and Prayers,
Joee
So glad to hear of the little improvements that you are seeing. We will pray that over the next few days that continues to be the trend.
Love Always,
Nat and Andy
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