The past 24 hours has been nothing short of a nightmare. Adrienne was doing okay on BiPAP yesterday and they were getting ready for her chemo. She had to get a 6 hour infusion of sodium bicarbonate so chemo was supposed to start around 7 pm. Late in the afternoon, she woke up and tried to take the BiPAP mask off, and when she did, she turned blue within seconds. One of the nurses held the mask to her face and the decision was made to intubate. We made sure she could still get chemo while intubated; otherwise, we wouldn't have done it. Her pulmonologist (bless his heart) came from his home on a Saturday night to do the procedure. The whole thing took about 20 minutes but it took until this morning to get her stabilized. Her BPs have been all over the place, she was bleeding from her stomach and lungs, and her heart rate was very high. She got two units of platelets last night and two units of whole blood this morning and we haven't seen any more bleeding.
This morning, her ICU/chemo nurse came in just for her and she got her chemo. The first two were fine but her heart rate rose a lot for the Doxil. It went back to normal after the infusion was done. Her BPs are still a bit all over the place but they have lots of meds for that and are watching her closely. Her oxygen sats are good and the ventilator isn't even very high (70?).
Now on to the fun stuff. Keeping her sedated has been a challenge. Before the intubation, her big concern was being awake and feeling it. She was asleep for that part but since then, she keeps waking up. They have her on a propofol drip, a morphine drip, and now added an ativan drip this morning. No one can believe that such a little girl (all 93 pounds of her) needs so much sedation. All these years of procedures and medications has led her to build up a huge tolerance. She was really awake this morning, which frankly, scared the crap out of me. After a bit, she started writing on a pad of paper, most of which I couldn't read, but I got the gist. Her mouth was too dry. She wanted her head raised. She wanted to make sure that the premeds for her chemo were done correctly. She asked if I had talked to the docs (she saw them but didn't remember). She even asked me to turn the TV on. Still Adrienne, thank goodness.
Curt is with Adrienne now while I came home for a shower. I've been washing my hair in the sink and taking sponge baths all week. She's stable right now and we can only hope and pray that the chemo works. We should know in a day or two if it's having any effect.
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17 comments:
I know it's tough but Adrienne's determination is incredible! I love you "Peaches n' Cream"; you are so beautiful!!!
Alison, you're such an awesome Lady; please take some time for yourself when you have an opportunity. I love you too, Sweetie!
You're both in my heart... always,
Sandy xoxoxo
So sorry to hear of this latest ordeal for Adrienne. I am hoping that the chemo kicks in a there is improvement quickly! You girl sure is a fighter! I read quickly about this type of chemo and the statistics are encouraging for those who have relapsed after SCT and other treatments ( I am sure you already know). I am keeping you in my thoughts and hoping for good news.
((HUGS))
Carol (mom20)
Oh my gosh. I just read up and got updated on things. I'm so sorry this is happening. Sounds like they're on top of things. I will pray everything goes well and the anxiety is easier to deal with.
What a trooper she is! Adrienne absolutely amazes me. If anyone can fight and win this, she can!
Glad you've been able to take a beak and that Adrienne is stable now. It's been such a roller coaster for you - I'm amazed you can put two words together.
Thank you for the update - a rare hour goes by when I don't think of you all.
Love and prayers,
Ann
Praying that the chemo works its magic and Adrienne can come off the vent soon.
a mom
Oh, Alison, what a night and day. Take care. Many, many people pulling for Adrienne--wish we could do more.
Karen, Clare's mom
Thinking of all that is happening with Adrienne and what you are all going through brings tears to my eyes. What an amazing lady...still got that spunk that has gotten her through all the many years of fighting this continued battle...thank goodness. Praying that she will stablelize during the next few days and that the treatments will do their job for her quickly and without added complications.
Keeping you all in our thoughts and prayers.
((HUGS))
Susan
You don't know me, but I came over from the Lymphoma board to let you know that you and Adrienne are in my thoughts and prayers.
Alison-
I am glad she is intubated and getting the treatment she needs to heal. The meds she is on are pretty standard for an intubated patient, and if the balance is done right you will get some quality time with her while she is intubated. Pat was awake for 3-4 hours and asleep for 3-4 hours. It is exhausting for the caregiver, but at least you can get that time in. The propofol especially will cause her to forget all of this. We refer to it as "milk of amnesia" in the ICU. REally it is a Godsend.
As for the vent settings, 70 is pretty high.. good thing she isn't at 100.. that means the vent is maxed out. 30 is the magic number for vent weaning. If she can hold her own at 30, they will start to try to wean, but right now that is a ways off.
Eventually they took Pat off the propofol and switched to ativan and morphine. He wanted more awake time with me, and tolerated the vent very well. The only thing was when he woke up from his 4 hour nap he was really confused, and as long as I was there, he didn't require restraints. That is also another reason I stayed with him 24/7 in the ICU, so he didn't have to be restrained. Have they said anything about the possibility of a swan-ganz cath yet? They may not for her, but it looks like they might from reading your updates. Remember to call if you have questions or just want to talk. I am praying hard.
Love you guys.
Carrie1979
I'm hoping this chemo kicks in soon and gives her the relief she needs.
Thinking of you often!
XO
Kelly
I hate your posts. Adrienne had given mother, myself, and my brother hope for years. Please know that she is in my prayers. Adrienne has inspired my family for a long time...she has to keep going :)
I am sad to read that Adrienne is intubated. You are both amazing. You both are in my thoughts. <3 <3
Alison, I can't believe what a nightmare this has been!!! If you had told me this was possible, I would have thought you were dreaming while awake. I check the blog often each day and am with you all in thought if not in fact. We continue to send our love and support.
Mom
This has to be incredibly difficult. May the GND and antibiotics work their magic.
I'm so glad you are getting a chance to get a shower and a little break. Try to take a little time to rejuvenate yourself by clearing your mind or focusing totally on something else. Its really important to have some empty head time. I know its hard, but you are incredibly strong and can do it. Is there any way you could get a relaxation session with a psych. They worked wonders for me.
Heers to hope!
Prayers are coming from around the world.
(((HUGS))),
Judy_smile
Oh Alison - I can't begin to imagine.
I have always been in awe of Adrienne and am even more so just now..........that daughter of yours is one helluva lady!
Adrienne - know we're ALL, the world over, pulling for you - be gone, foul cancer - love you, kiddo <3
Alison, strong lady......take more strength from all the love out here for you all.........<3
I'm so sorry. Hoping and praying that the chemo does amazing work and that things improve dramatically and quickly! Sending love and prayers.
Lisa
She is such a strong girl. We are keeping everything crossed that GND does its work and the tumors reduce. And the lungs start functioning properly.
When I had a giant (about 3 liters) effusion before the start of ABVD, the thoracic surgeon said that once the tumor is gone, the lungs will process the fluid themselves, and given that through the day they flush about 10 liters of fluid, 3 liters is not such a big amount. And that's exactly what happened. So I'm hoping that once Adrienne lungs are a bit better, they'll start working and will produce enough oxygen for her to breathe on hr own. This is what I am hoping and praying for.
Love, Marsha and the family.
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