I wish I knew how to answer this question. Adrienne was doing fine on CPAP, one step down from extubation, but then started having trouble around 7 am. She's back on the full vent again with a new tube down her throat and she's very sedated again. She's a fighter. All the docs keep telling me that. The chest xray is the same as yesterday so no one knows why she suddenly started having trouble again. They'll try again tomorrow to go down to CPAP. The big issue looming now is that the breathing tube can only stay in for 14 days and then she needs a trach. That's a concern because she has no platelets (she got them again this morning) and she's had a lot of radiation to that area. It just might be too dangerous to do the procedure. We'll need make some decisions br Friday.
Adrienne got a new NG tube that goes into her intestines. Those feedings seem to be going better. Her liver numbers were stable today. If this is all working, her numbers and yellowness should improve in the next few days. One of the nurses didn't like the yellow gown either so now she's in a nicer blue one.
WBC came up a little bit today. Yeah! A--hole doc came in during the commotion for the ventilator so I decided to ignore him since I wasn't up to a confrontation at that point in time. I spoke to Adrienne's onc here and was pretty frank. He's going to stay involved and make her treatment decisions with Dr O. I can see the next big argument this weekend when she needs chemo and doesn't have any platelets. Otherwise, an onc isn't really needed right now.
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11 comments:
i'm so sorry that adrienne is having so many struggles. but she IS a fighter! and i believe that she must get that from you.
you are an awesome mom and an awesome advocate for adrienne. keep up the good fight just like adrienne is. i know you must be exhausted.
as always you are all in my thoughts and heart.
Hi Alison,
Still riding the roller coaster, I see. How you tolerate it I don't know. At least Adrienne is sedated and doesn't have to ride it also.
Love,
Mom
A--hole doc is not welcome on the A-Team.......please feel free to use this comment to back up any frank discussions!
Ugh - so, so pleased that liver has stayed stable and that the feedings seem better but wish the lung issues coule resolve.
I'm glad the docs can see Adrienne for the incredible woman she is, would be easy for them to distance themselves but they've chosen to care - inspired, no doubt, by the courage and determination of you all......<3
This process is so trying, arduous, and difficult. I check on Adrienne's progress every day, and continue to hope and believe that her fighting spirit will get her better and out of the hospital, no matter how many bumps along the way.
Take care of yourself too, Alison.
heather spoke my words....
you girls are in my heart.
love,
j
Good to hear the x-ray is still looking better and of course hoping that a trach can be avoided. So sorry you have to deal with a crap Dr through this, while you are surely equipped to hand him his A-- when he gets out of line, I just wish all Dr's truly understood the unnecessary additional stress they can cause. Keeping you both in my thoughts as always. . . hoping for lots of improvement and good news to come shortly.
Thank God for those nurses! I love that she got Adrienne a blue gown. As for the doc - you got his number right. Don't let him get you down. HUGS -
Hi Alison,
I continue to pray for you, Adrienne and your family every day. May God give you strength and peace.
Isabelle
This stuff is not for the faint of heart, is it? For daughters or their mothers! You and Adrienne remind me a lot of my mom and I. When I was in the hospital my mom got very frustrated with one of the night nurses. She looked out for me and stuck up for me as I know you have done and are doing with Adrienne now. Love and Peace.
Hope the day went better than it started out. You gals are never far from my mind. Keep feeling the love that is surrounding you both from afar. ((HUGS))
Susan
When my dad was at Columbia Presbyterian, there was one rounding onc who was just dreadful (all the others were amazing). so negative and wouldn't consult with my dad's onc when making decisions about treatment (all of the others would). i spoke with a patient advocate, the floor social worker, and the floor's np who kind of ran the floor and they made it possible for us to work with a hem/onc fellow instead who really communicated with my dad's onc. it might be different in the a different hospital and in the ICU(though the rounding onc on the transplant floor was the same as the rounding onc for my dad in the ICU at Col.Pres; unfortunately we landed there too). i know you probably have limited energy or time to deal with this, especially if it takes you out of the room, but please find the patient advocate and go further if necessary (he/she can meet you in the room; you know this, i'm sure; sorry). you don't need an aggressive, uncollaborative, negative doctor or the headache and anxiety of having to deal with such a man. it takes so little for these guys to be gentle and resourceful, especially when so much is at stake... our a-hole made a stink about low platelets (they left as soon as they came) and giving chemo when what choice did we have (we won, though)? i'm praying for you and Adrienne to get back to the simple things, like cuddling with the dogs!!! take good care and know that you have the strength to walk through this with her, though of course nobody should need to. my, what a brilliant caregiver you are to your bright, beautiful girl, and how lucky the two of you (at least, partially lucky) are to share such a great love for each other. Prayers!
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