Overnight, her oxygen saturations dropped 5 points or so every time she was touched (examined by nurses, legs or arms moved, etc.), and it took her a pretty lengthy amount of time to recover. She is currently at 65% oxygen on the ventilator and we are reluctant to touch her much.
She is also having a harder time urinating despite increased efforts to flush her out. It sounds like her vascular system is fairly dry, and the tissue outside of her veins are saturated with fluid. So we have a tough situation there.
Today we heard the first mention of possibly starting steroids to try to reduce the inflammation in her lungs. This is the ultimate risk though. The benefit is that it very well could reverse the ARDS to an extent and help her to recover. However, if she still has an infection, the steroids could feed it and make things much worse (there's no room for much worse than where she's at). Or, it would put her at a heightened risk of getting a new infection. I think they'd like to wait a couple days to try this--to try to culture her blood, urine, and lung secretions one last time to rule out that there's lingering infection. Steroid use for this disease is controversial because it is such an immense risk/reward intervention. It could either save her or kill her. We don't know yet if they'll decide to use this intervention or not. If they decide to, it is clear that they are trying everything they can to try to save Maggie. It would also signal that they aren't satisfied with how she is recovering on her own.
Please pray that Maggie is infection free, that her signs of inflammation and immune response are just a symptom of her chemo wearing off, and that she turns the corner--and soon.
17 comments:
Praying, praying, praying. She can do this! She is a fighter! I'll come by to check in about 1pm.
again we are checking your blog at a regular frequency, hoping, and praying. We are still ready and willing to drop everything at a moments notice. There is no questions that the prayers for Maggie are at the foot of her Savior and we will continue to pray for your strength and stamina as you begin week two. Sending you my hugs and love.
praying for Maggie, you and the doctor's and nurses caring for her... for wisdom, strength, healing and peace. Our thoughts and prayers have been with you continuously. We will continue to pray for your sweet little girl.
Hello....this is Genia from Jeff's office once again. I have been checking morning and nite for updates and I have to say that you two are unbelieveably strong parents that have spawned an unbelievalby strong little girl. It is inconceiveable to imagine with all this strength, that this little one will not pull thru. As always, my prayers are with all of you. I don't know where you get the strengh, other than I guess you just do what you have to. Peace and prayers to all of you. I am looking forward to that update that states that she has turned that good corner. Genia
This sounds like a terribly complicated situation for Maggie but we are praying that things turn around for her soon!! She is such a fighter. We are still with you Maggie and Whitney and Andy.
Praying. Carol
Continued prayers for maggies strength! ~mz
My prayers continue for Maggie and her family.
Tina~
We just wanted to let you know we are praying often for Maggie! Our Sunday School class is praying too!
Phil and Krista
Praying against discouragement and hopelessness today for you. Continuing to pray for Maggie's recovery and good health. We love you and are continuing to pray, pray, pray!
Elisha
Continuing to pray for Maggie and have requested several other people to hold you and Maggie up in prayer. May God hold you close in his arms.
We are praying so hard for you and Maggie. She is a fighter. Praying also for your strength thru all of this. Keep strong and know that God is with you
Dean & Jane
I hate to see that Maggie continues to struggle and develops more problems. Have you gotten any definitive cause of her ARDS from her bronchoscopy ( bacterial, fungal, PCP)? I have gone back to examine Katie-Belle's pattern as I recall this same sort of up and down trend. What I reviewed is that she seemed to improve after a few days on the ventilator, then wosrened and had to be on her belly with paralytics, then she improved for a couple days and was able to come off the paralytics, then worsened again after a week in PICU and had to be placed on her belly and back on high ventilator settings. Over the next several days she began retaining fluid and was diagnosed with SIADHD which causes sodium to be retained in the tissue rather than in the blood or being excreted in the urine. Her urine output basically stopped and she swelled up like the Michelin man. They had to decrease her total fluid intake to 10ml/hr total to somewhat dehdrate her and reset her ADH system. This worked within 12-24 hrs. and her fluid volume was gradually increased over a couple of days. Katie-Belle was also on steroids for inflammation pretty early in her treatment despite her PCP infection and was slowly weaned to lower doses by that point, but wasn't totally off until well after she was off the ventilator.
I tell you this to let you know that she had steroids and other than a UTI late in her treatment, she didn't get any futher infections and to mention the SIADHD since Maggie may be starting with that. Also to reassure you that we saw these exact same trends at the exact same times in the course of Katie-Belle's treatment and she did eventually improve, survive, and thrive. I hope that offers you an added ray of hope. It was around day 13 that the SIADHD started to resolve and she showed some gradual improvement enough to be extubated after 18 days on the ventilator. I hope that some of this is helpful. I am praying for you and Maggie. I hope to hear news of sustained improvement soon. Keep the faith. I know it is hard!
Karen Cooley
Dear Andy and Whitney, Our hearts are heavy...but we are right beside you with many, many prayers and much comfort. We can only imagine what you are going through. We are praying hard and constantly that Maggie can pull through this.
If and when Maggie's physicians decide to use steroids we pray to God that they will work! And make her start to get better and not worse.
We are desperately praying that Maggie's condition starts to turn the corner and real soon!
We know that you are trying to ~STAY STRONG~ AND ~KEEP THE FAITH~
And as hard as it may be, just know that God is "OUR SAVIOUR" and "OUR ROCK".
~*~*~*~DON'T STOP BELIEVING~*~*~*~
I LOVE YOU GUYS...HANG IN THERE!!!
Please blow precious Maggie ~A WARM HUG~...~A BIG KISS~ and ~A GET WELL SOON WISH~ from us.
~FIGHT MAGGIE FIGHT~ * ~YOU CAN DO ~THIS BABY GIRL~
Much love and warm hugs to you Andy and Whitney and Maggie!
Lots of continued prayers, Tina, Bill, Tyler, Brock, Karen, Tim, Brittney, Bonnie, Steven, Paige,
Baby Rhiannon, ALL my Family, Friends, Neighbors and Church Of The Nazerene Prayer Chain
Andy and Whitney - we are praying for you - for strength and hope, both for Maggie and for the two of you. She seems like such a little fighter. Jessica Witmer and Nate Gundy (from Oak Grove)
Dear Andy and Whitney,
You know far more medical information than any parent should ever have to know, and I wish I could relieve you of that heavy burden. Having said that, what an incredible advocate for Maggie you have been to know as much as you can about her situation.
My heart is heavy with prayers of strength for you both and for sweet Maggie. Tomorrow at school I will send an e-mail to all our teachers asking that their classes spend a moment in prayer for all of you! That's about 900 prayers coming your way!
Please no I am just an e-mail away and will help with anything you need. Right now I am praying!
Susan D.
Thinking of you all. Believing that Maggie is going to turn the corner, and beat this nasty ARDS.
Love,
Monica Miyashita, Mama to ^Liddy^, watching over Maggie : )
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