Apparently, Scarlett was not ready to be home. She missed her nurses and hospital friends, so she made sure we were back before too long.
Yesterday, Scarlett woke up early while Chris was getting ready for work - about 3:15 am. She gagged and sputtered a little, so I gave her a dose of anti-nausea medication, then changed her diaper to settle her back to sleep. As soon as I picked her up, I noticed she was burning up. We took her temperature a few times, and as soon as I saw 102 I called the on-call oncology doctor. The rules are clear: a temperature that high requires emergency room ASAP.
Chris had to go to work. I packed Scarlett up, threw on some shoes and headed for our local ER. We had been there once before, the day the tumor was discovered. I was not thrilled to be there under any circumstance, but even more concerned that they would not know how to handle Scarlett's specific medical issues. I was right.
We arrived at 4am. They found no fever, but wanted to do blood cultures anyway. I was hesitant, since Scarlett was supposed to have blood work and chemo again later that day; I didn't want to expose her to infection or hurt her more than necessary. Unfortunately, another call to the on-call oncologist made the choice easy - she said do the cultures. The nurse accessed Scarlett's port and drew the blood.
Fevers indicate infection of some kind. With her immune system compromised by the chemo, Scarlett is very susceptible to infection and even a run-of-the-mill illness can be life-threatening to her. Her port, while under the skin and only accessed in sterile conditions, is a likely source for infection, so any fever means that a sample of blood is drawn to see if her port is infected, and another is drawn from her arm to see if any other infection is present.
The arm sticks were really hard because her tiny veins are hard to find, and don't give much blood. The phlebotamist had to poke both arms and still barely got what she needed. Now both arms are bruised from the elbow to shoulder.
After a few hours, with no fever and blood cultures likely going to take all day, I was ready to take her home and take a shower before she would see her regular team at Stanford. That's when things got crazy. The ER traffic started to pick up once the sun was up - car accidents in morning traffic, a guy who took too much 5 Hour Energy and a guy screaming and jumping around in pain needed the nursing attention. None of the ER nurses knew how to de-access the port (the one who accessed her had left by then). They didn't know what medication to use to lock it off, what procedures to follow, and it began to make me nervous. When they handed me a 22-page print out of "How to Treat Patients with Venous Catheters", I called the oncology advice nurse, and she basically said to get the baby and go, leave her accessed and bring her straight to her regular nurses so we didn't risk excess bleeding or infection.
We did just that. I signed off that I was taking her with the port accessed and we drove across the bay. It was about 10:30 am when we were brought into the outpatient clinic for monitoring. Her fever was back, she had chills and there was a little blood in her diaper. Her blood work showed that she had very low blood counts and needed a blood transfusion. Low platelets make her bleed and bruise easily, and can cause bleeding in her intestinal tract. They redid all her blood cultures (including the ouchie arm draw- which again took both arms!) With her fever high and the other factors at play, she was admitted for at least 48 hours to figure out what is going on.
Overnight, her fever hit over 103. Tylenol brought it down, and it seems it has cleared. She does not want to eat, so we are feeding her through the NG tube. She is not feeling well; it is obvious just by looking at her. As much as it stinks to be in the hospital yet again, I am glad we got here before it got any worse. She hasn't been anywhere or with anyone other than family, so I don't know what has made her sick. It will be a while before the blood cultures come back with any results. It is scary to think how quickly and severely she can go down hill.
Hopefully more good news soon...
I've been hoping for an update all day, and I'm very sorry to hear that Little Miss is running a fever. Sorry you had to deal with your local ER...it sounds like it was just more trouble for you than it was worth since her normal team re-did her blood cultures anyways. You did the right thing taking her in right away, good job mama. I'll be thinking about her and hoping whatever this is passes QUICKLY!
So sorry Scarlett is not feeling well. We put a little package in the mail today for Scarlett that will hopefully make her smile. :)
You all continue to be in our thoughts and prayers.
I'm so sorry. Stay strong little Scarlett! Thinking of you all <3
I'm so sorry to hear about your experience at the ER. I'll bet once baby girl sees those familiar faces she'll perk right up! Sweet little girl, she and your family will be in my prayers tonight!
So sorry that on top of everything else she now has a fever. A fever is a scary thing in a little one and especially in Scarlett's case. I just want you to know that reading your story is such an inspiration to me and also makes me be so very thankful for my healthy almost 8 month old, James. I take for granted the ease of everything we do and Scarlett reminds me to be thankful and not take it for granted. I think you are so strong and brave and such a wonderful mother for precious Scarlett. I will be praying for her tonight and you as well! I hope you both can get some rest!! :)
Ugh, this sucks, I am thinking good thoughts for little Scarlett :) You are doing a great job Mama. Thank you for keeping us posted....healing vibes from Austin, TX xox
You guys are so strong. My little girl was sick the last couple of weeks (she is 8 1/2 months) and the stress of a high fever, doctors running tests to find out whats wrong, trying to administer medicine that she would just throw up, ER visit with iV of meds, all this stressed me out beyond belief. But through it, I kept thinking of how you guys have to deal with this basically every day, and how strong you stay, and what a good mommy you are. It kept me grounded.
Oh Mama! I am so sorry that Scarlett is sick. Stay strong. We are all here for you!
Thank you for the update on Scarlett. I am so sorry that she is feeling badly. You are all in my prayers.
So sad to read this, but glad that you are in a good hospital that you trust and that knows Scarlett's case. She is always in my prayers.
How scary! I am so glad that you were able to get her to the right place for treatment in time. We'll be praying for you as usual! Stay strong, mama!
Saying a prayer for little Miss Scarlett right now. I know that God can move.
I'm so sorry. I just wanted to share this article with you:
I found it very interesting and then another mamma shared a success story with her mother who had cancer as well on the crunchy board on BBC. I was wondering if there was a possibility to get donated BM! Maybe that would help? Not sure. Still keeping you guys in our prayers!!
Brandi, Chris, and Scarlett,
This is my first comment, although I have been following your blog since the beginning.
I include a prayer for Scarlett every day and night, and I know that God has a special plan for Scarlett!
Scarlett is so lucky to have such a caring mother- Your a very strong woman.
As tough as it is to be in a hospital, I am sure it is a relief to know you are in capable hands (unlike that ER!).
Lots of prayers and hope for a good update soon!
We are continuing lots of prayers for Scarlett!
Poor Little Miss Scarlett, and poor you for being back at the hospital. In our experience of hospital stays, we are always more likely to pick up a bug while at the hospital versus being at home. Hope she gets to feeling better soon!!!
Poor little Scarlett and poor Brandi. What a scary morning. Fingers crossed she will pull through this too.
Terribly sorry to hear Scarlett is back in the hospital. We are sending warm, healing thoughts your way. I know she will get through this and continue to fight. You are an amazing super mom - it astounds me how strong you are although I know it is so horribly hard for you to see her suffering. I believe she is feeding off your strength, so keep your chin up mama! Will be looking for an update with good news! :)
Oh Brandi! You are such a hero!
Praying for little Scarlett tonight!
Hugs all around!
Hang in there Momma- it will be okay.
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