And the hits just keep on coming...
We're on high alert here. It has been another long and difficult day, but we are finally beginning to get some answers. We have done multiple blood cultures, urine cultures, stool cultures. She has been on antibiotics for more than 24 hours. But the fevers have not eased; every 4 hours, as the Tylenol wears off, the fever reappears, anywhere from 99-102.1 today. We stopped feeding her, and she refuses to eat. She is getting I fluids to keep her hydrated.
More troubling has been her behavior. She has been awake and quiet for more than 12 hours. She just won't sleep. She got Benadryl and Ativan for nausea, and still didn't sleep (Ativan usually knocks her out within 20 minutes). She has just been looking around and laying still all day. She definitely looks sick and weak, and has gone down hill since yesterday.
After waiting all day for some positive change, I realized her fontanel was full, and the veins on her head were very prominent. I had them call for someone who knew her head situation more specifically; since her head is different than any other baby head, the few professionals that see her regularly are the only reliable sources of information about what is "normal" for her.
When the chemo nurse practitioner came in, she agreed immediately that something was not right inside her head. They ordered a STAT CT scan to get an idea of what might be going on. We rolled her down to the imaging department, and she finally perked up a little and looked around; the "fresh" air of the hallway and the new sights got her attention for a little while. She dozed during the CT scan (my phone didn't save the picture!) but woke again as soon as we moved her back to the crib. She takes 5-10 minute cat naps, but wakes back up again.
The next step was to check that her shunt is functioning properly. A neurosurgeon came to "tap" the shunt. She stuck a needle into the resevoir under the skin and took a sample to culture. She also checked that it was draining into her stomach properly...it wasn't.
The preliminary results show bacteria in the spinal fluid. She is exhibiting "altered mental status". One of the doctors mentioned meningitis. Her antibiotics have been ramped up to cross from her blood into spinal fluid (the two fluids don't touch. Only certain medications can cross the blood brain barrier. This is part of why her chemo is so severe, too). We hope to get more information in the morning.
Just before I hit "post", the neurosurgeon came back for an update. There is a high level of bacterial infection in her spinal fluid. Basically, her shunt is infected, and is draining infection into her abdomen. She is scheduled for surgery first thing in the morning to have the tube from her shunt pulled out of her abdomen and hooked to an external bag. It is a short, simple non-invasive procedure that should take less than an hour (small beans in Scarlett-land).
We will be transitioning between oncology and neurosurgery teams, and moving to the PICU, so I won't be able to post an update until we are settled somewhere later in the day.
Good luck guys! Always praying for and thinking of miss Scarlett and you. I don't often post but I check for updates regularly. Praying for an easy surgery and quick recovery from this little bump in the road.
So sorry to hear you've had this speed bump.. I'm thinking of you all and sending lots of healing vibes your way.. WE LOVE YOU SCARLETT!!! hope you can fight that infection off soon!!!
You are an amazingly strong woman, even with the incompetent nurses at Er to you having to go to the ER by yourself. Praying for you tonight, for your husband and little Scarlett!
It is very scary how quickly things can change and go downhill. I think you do a very good job at maintaining a sense of awareness but still trying to help Scarlett have a 'normal' life right now. You are so very strong and I truly believe Scarlett will pull through and be around for a looonnngg time to put you through stress and worry. At this point, boys would seem like a cakewalk, huh?
Wow....I'm so sorry to hear about this latest development. But good for you for dragging yourself out of bed at 3am and getting her to the ER and then back to her regular doctors. She's in good hands. This is a marathon and you guys have amazing endurance. She is a strong girl (as are you!) and you'll get through this setback. Take good care. We're sending lots of good thoughts from London.
So Sorry to hear this Brandi and Chris. Hope she is on mend soon.
You guys are so brave! Especially little Scarlett! I read your blog in my google reader and my heart breaks for your family. Thanks for sharing your stories and just know that my little family in a Rick in the middle of the ocean is praying for your family! Love you guys! *hugs*
I am so glad to hear it is not meningitis. Our family had to go through this the past few months. My dad had it. It was Thanksgiving Day. He's better now but since then we've been dealing with the aftermath. We almost lost him because of his stubbornness.
Praying that she bounces back quickly from this. Sending my love to you three.
I'm so glad they finally figured out what is going on with her and can work on getting her better. As a new mom myself, I can't imagine the strength it must take to handle Scarlett's situation. I am constantly in awe of how strong and together you and Chris remain while getting your sweet girl through all this. You all are in my thoughts and prayers. Stay strong Scarlett!
Praying for you this morning
I am so sorry to hear about Scarlett. I hope that the surgery is quick and the medicines start working soon. I will be praying for you and your family!!
Praying so hard for you guys right now. I hope that she is able to fight off this infection!!
Praying for Scarlett all of you!
So sorry to hear! I am praying for you guys, stay strong!
I am so sorry to hear about this latest development! I check every day and hope that Scarlett is getting better. My thoughts will be with her and with you. She is so strong.
Praying for you all! Infections are so scary...thank you for keeping us pray warriors updated!! You're doing an awesome job, being the best mommy, so keep staying strong!! Hugs to you all.
Poor baby, I think and pray for her often. She is such a strong girl, she really deserves to have things go right for a while and I hope do immediately.
Praying for your sweet Scarlett!
Praying for that brave little girl! I'm in your October baby birth club, and your story has really touched me. I'm praying so, so hard for Scarlett! Fight, baby girl! I hope she can fight this infection quickly and get feeling better soon!
Oh my goodness! I've been without a computer for almost two weeks and just caught up with Scarlett's progress.... Your blog is the first thing I looked up!
My 8 month old son and I continue to pray for Scarlett and your family every night before bed. After reading how much all of you have been through lately, I feel as if we need to pray much, much louder!
When my dad was diagnosed with stage 4 cancer, the oncologists made it very clear that he would have to get much worse in order to get better. I sincerely hope that this is by far the worst part of Scarlett's treatment/reaction to treatment. My dad did get worse, but he got much, much better and has been in remission for 2 years now. Miracles do happen, and I see one in Scarlett's future! :)
Brandi....I am in awe of your strength and courage. I spent 21 days in the NICU/surgical floor with my son, and it was the most draining and stressful 21 days of my life. I cannot even begin to imagine walking in your shoes....in awe of you. May God give you the strength you need to continue on this journey with your beautiful baby girl.
Good luck with the surgery today! We will be praying for Scarlett. She is such a trooper. And good for you for noticing even small changes in her appearance, you are a terrific mother!!
My stomach turns to hear this news. I will be praying hard for Scarlett and your family. Hopefully things get back to normal ASAP. Thank you for keeping us so updated so we know how to pray specifically.
Lots of love and prayers for your family and Scarlett's miracle!! I have complete faith that she will breeze through this surgery just fine! She is stronger than a whole lot of adults I know, Scarlett will be one tough, brilliant cookie!
There is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. - Robin to Winnie the Pooh
I am so sorry to hear this, Baby Scarlett you are such a fighter, Stay strong baby girl! Brandi and Chris, you are both amazing, and so very strong. We will continue to pray very hard for all of you.
I'm praying for Scarlett today, that the infectious fluids in her abdomen just go away however they do that, and let that little girl get healing again!
Thinking about you guys today, and hoping to hear a good update soon!
Lots of love..
Heather and Lindsey
I guess its good to get some answers, even when those answers seem very frightful.
We will be praying for her, you & Chris.
I have never posted before, but I read regularly. Sorry to read about this setback. Hope Scarlett is better soon!
I've followed your story from the beginning, as we were going through our own medical mystery with our 3-year old son.
Scarlett is amazing, and I continue to be in awe of your strength and courage in this situation.
Sending many, many prayers for all of you.
All of our thoughts and prayers are with you all tonight. She is a strong little girl and tomorrow will be a better day. We love you all tons and will keep checking in for updates.
Tara and Wade Poor
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