Friday, January 7, 2011

Today

Not much new information today.  We know she is having frequent small seizures in the right hemisphere, which is the opposite side from the tumor.  While this is not unexpected, it is not easy to hear.  We can't see signs of the seizures, though the doctors sometimes notice some staring or stiffness that they attribute to them.  She is now on high doses of phenobarbitol to reduce the seizures, so hopefully that will make some difference.  

The neurologist, who we have learned is the most clinical and least gentle of the doctors we have talked to, mentioned she may have had a stroke.  We won't know until the MRI this afternoon.  I'm trying not to worry about it yet, but I'm failing.

As Chris mentioned, there is also a large bubble of air in the now-empty space in her head that was once tumor.  They showed us the CT scan, and it basically looks like someone used a spoon to scoop out the majority of her brain.  Air doesn't seem to be such an unlikely occurrence, and as difficult as it may seem, I am not worried about getting rid of it now since they are going to open her up and let more in next week anyway.  It's funny how different my threshold for "serious medical issues" is right now.  Air bubble in brain?  Meds can stop her breathing?  Seizures?  Sounds good, whatever has to happen to get to the next step.

I keep trying to remember that what we see right now is pretty meaningless.  Nothing is certain, and there is no way to know what the long-term effects may be.  Paralysis today may be resolved tomorrow.  Swelling is always changing.  Nothing we see today means anything for her future.

My biggest concern, and the most difficult, is pain management.  How do you know when a 2 month old hurts?  She can't say "Ouch!", she can't point to where it hurts.  She can't even cry right now.  I slept next to her all night, and it was pretty quiet.  When I woke at some point, I heard her whining a little. I asked the nurse, and she thought it was just snoring...I didn't believe her, but what do I know?  Her heartrate has been high, understandably, so I just watched it closely.  A few hours later, the next nurse came in and noticed all kinds of things were wrong - a stick-on heart monitor was yanking, her catheter was pulling and an IV in her foot was leaking.  She was hurting, and the new nurse couldn't believe she hadn't been given pain medication yet.  It was devastating.  Now I am learning what to look for, what I can fix myself and what the nurse can do to help.  She should not have to feel pain, and I am going to watch for it as best I can.

For those who have asked, we have a PO Box now.

Chris, Brandi and Scarlett
P.O. Box 1573
Newark, CA 94560

64 comments:

Andrea said...

Bless her sweet little heart. That makes me so sad to think that she was just laying there in pain like that and had NO way of telling anyone...and bless your heart for knowing something has to be hurting. :( Praying for your precious Butterfly.

JGreen said...

My heart just aches for you. I have been following your blog for the past few days and just hoping and praying for your precious baby girl. How upsetting that she was in pain last night. I'm glad you're learning what to look for and remember to always follow your mother instincts ;) Take care and remember that you have the world praying for little Scarlett.

-Jennifer Green, Mommy to 2 in Pennsylvania

Keri V. Kennedy said...

As a mom who has endured countless hours with her child in the hospital and seen the high heart rate I can tell you a "miracle medicine" - Mommy's voice (or daddy's). I've sung to my daughter and watched the blips on the heart rate monitor slow to a more normal rate. My daughter has epilepsy, so these were increased heart rate while she was seizing. I sang to her - at a time when she had no conscious control over calming herself, and her heart rate slowed, her breathing normalized. It was such a beautiful site.
You do have to fight for your child. It takes being "That mom" - the one the nurse complains about when she is in the lounge or off duty. But what matters is getting what Scarlett needs when Scarlett needs it. Parental instinct is always correct.

Anonymous said...

I've been reading your blog religiously for a week now. Your struggle brings tears to my eyes and my heart hurts for you all. I think about you and Scarlett several times a day and pray. I pray for her recovery and health and for your strength. As a parent of two young children, I don't know how you're doing this and retaining your sanity. Keep fighting for your beautiful daughter. God bless.

Catherine Soni said...

Thank you for updating. I think about Scarlett all day long and pray for her just as much! That's good that you are learning what to look for to help ensure her the least amount of pain possible. What a precious and strong little girl! I will especially pray for her to stop having seizures and that she did not and will not have a stroke. Praying for you and Chris as well...

Em Hoskins said...

We are continuing to lift Scarlett, you and Chris and the medical team up in prayer. You are a strong woman and have many praying that Scarlett's bed is surrounded by angels and you all feel the Holy Spirit's presence. You are Scarlett's best advocate and ask and make as big a fuss as need be. It doesn't matter whose toes you are stepping on when it comes to your precious baby. Many prayers from Georgia and Indiana. xoxo

Mary - BBC Nov '09 Board said...

Oh my...you two, no, you THREE are so strong! My heart breaks with sadness and happiness every time I read an update. To know that your baby girl was hurting and the nurse of all people didn't do a thing, I would have been livid! Thank goodness the second nurse noticed. Mamas just know. I couldn't imagine being in your shoes. I know you hear it a thousand times a day probably, but stay strong, stay positive. God is with you and beautiful Scarlett. I don't know you, but I wish I could give you a big hug. We are praying for you.

Kelly Wills from Cleveland, Ohio said...

What a strong little girl you have! Like the others who have posted, I continue to pray for baby Scarlett, you and Chris. My little girl is 6 months old and suffered a skull fracture a month ago. So while I didn't experience near what you are, I do understand the fear and anxiety while waiting for CT results, the helplessness of watching my little girl cry in pain and fear during tests on her head and body, all the while just trying to provide her comfort and making sure she knows that Mommy & Daddy love her more than anything in the world and will always be there for her. I know you and Chris are providing that for little Scarlett. Like several have said - trust your maternal instinct no matter what. It's always right. Stay strong, Mommy! Hugs and prayers to you always.

Sinead said...

What Keri said about singing is true. It really works. Also, from my experience with my non-verbal child having brain surgery, I suggest give the pain meds on a schedule. If they can be given every four hours then ask the nurse to call them up 30 minutes before they are due so that there is no pharmacy delay. Keep reading Matilda and sing as much as you can. Virtual hugs!

Anonymous said...

Stay strong! Sending lots of love and prayers your way. :-)

Anonymous said...

I have so much love for your little Scarlett. It makes me cry to read that she is in pain. I am angry with that nurse, at least like you said, you are figuring out what to look for.

Love to you all, once again.

...Keep it up little Scarlett, your strength is amazing!

Kristina said...

Just a stranger popping in to say that my thoughts, prayers, tears and heart are with you all.

Anonymous said...

Ever since I heard your story, I have been asking God for a miracle for your family. As an RN myself, the fact that the nurse didn't listen to your concerns makes me sad and angry all at the same time. Please remember that all of the hospital staff essentially work for you. You are the client. You have the right to say that your daughter needs pain medication. Don't be afraid to stand up for what you think she needs. Regardless of who holds the medical degree, no one knows better than mommy and daddy! Praying that God takes care of your precious Scarlett.

Chelle said...

I am a mom from the July 2010 board on BBC and have been following your story and praying for you constantly. I cannot get your little Scarlett out of my head. Miracles happen everyday, all of our little ones are proof of that. Keep hope, I know I don't need to say "keep strong," your strength throughout all of this is more than evident. Thoughts and prayers for your entire family.

Jessica and Katie said...

I'm so sorry to hear that one of your nurses was acting so incompassionately. ICU nurses especially PICU ones should have the biggest hearts. I know from experience that they can become numb to what is going on but for her to brush you off like that! I would go speak with the charge nurse or floor manager and make sure to request to not have her again. Her laziness is inexcuseable. We continue to pray for your sweet Butterfly. Hugs and prayers for all of you. I hope that you and your husband are getting enough sleep during this difficult time.
Sending all our love, xoxo-Jessica and Baby Katie
Sept 2010 BBC

Anonymous said...

Its amazing, I do not know your family personally but I knowyour story. I am always checking in on you guys.

I shed my tears for your little one as my baby is only a few weeks older as I am a mom for the November BBC board.

With the kindess love: Shelly, Elliot, Jenna and Morgan. <3

I think about you all the time and I know you have the strength to get through this as does Scarlett.

She is feeding off of YOU guys right now. She is strong because you are strong. I wish the best and will be waiting for the next update.

For your gut and if you beleive she is in pain you get another nurse to check her.

Anonymous said...

Prayers every day for your family.

Macy Farmer said...

I have read your blog EVERY SINGLE DAY since the first day you made it and i check in multiple times a day to find new updates! keep holding your head up high even in rough times. all you can do is hope and pray...as hard as it seems. good luck brandi and chris and sweet precious scarlett! you are all strong!

Kelly Snyder-Valdez said...

Poor little Scarlett. You knew something was wrong you are her mommy and you know better than anyone. I would have been very upset. You guys are amazing parents and I just know little Scarlett is going to be OK. I'd like to know what kind of treats you guys enjoy (you HAVE to eat and take care of yourselves too). I want to send a care package to you! I can be emailed at kellysnyder@allstate.com.
Praying praying and more praying for you guys. God bless you :)

Anonymous said...

Brandi, trust your "gut" when you think something is wrong or Scarlett is in pain, cuz you're probably right. I learned that as a mom and grandma.

I'm praying for you.

Rebecca {{BBC june2010}} said...

A mom knows best. Im thinking about all of you every day. I check in several times a day for any updates and as you said in this blog no she shouldn't be feeling any pain kick the doctors in gear that babygirl needs to be as relaxed and calm as she can be. Im continuing to pray for all of you. God bless. STAY STRONG.

Kacey Scott said...

Im from the August 2010 board and have been following Scarlett's story....I cannot get that sweet girl off my mind. I pray for her and your family. I hope you get the nurse situation settled for the better! Please know there are prayers being sent for Scarlett from Texas.

Kimberly said...

Your baby is precious. I'm so sorry she is in pain and I agree with a previous comment about singing to her.

Still praying for your sweet baby girl and your family.

Jennygirl said...

Just another stranger popping in to say that my prayers go up for your family, all the medical team and baby Scarlett. God works in miraculous ways and I am positive that he would never leave Scarlett alone, her bed is surely surrounded by his angels. Prayers and love to all of you!

Anonymous said...

I check your blog numerous times a day and when I can't I check on our Oct BBC board hoping someone posted about Scarlett! You are a strong woman, much stronger than I could be and im SO happy she's such a fighter!!!!!! I am praying for you, and your family and Scarlett are ALWAYS on my mind.

LeAnn said...

As a mom my heart aches when yours does, Brandi. I can't even imagine the difficulties you and Chris face on a minute-by-minute basis. With each update I realize what an amazing gift you are to sweet Baby Scarlett as her parents. God definitely placed her in exactly the right hands with the both of you! I am in constant daily prayer for Scarlett's complete recovery and for strength, comfort and respite for you and Chris because this is probably so overwhelming for you both. God will definitely see you through every step of this journey and even pick you up and carry you when necessary. You are her Mama, so you know in your heart exactly what she needs and don't be intimidated by any nurse...they are supposed to BE THERE for you and sweet Scarlett and if they're not then you need to let someone know...everyone should only have Scarlett's and family's best interest at <3 !! I will continue to check in and just know our family is praying and can't wait to celebrate your successful journey when Scarlett is healed completely!! Take care and Blessings be to you three- Sending lots of love from The Resh Family: LeAnn, Mike, Michaela & Landon xoxo <3 <3 <3

Beth (BBC Sept/Oct 2010) said...

Brandi as a nurse and now as a mom it kills me to hear that that nurse didn't listen to you!!! It breaks my heart to think that sweet little girl of yours had a painful night! I would honetly request to please not have that nurse again. Don't feel bad, your just being an advocate for Scarlett. When I was on hospital bed rest with my daughter I had a nurse overnight who missed numerous contractions I was having and since I came in bleeding from a very dangerous form of placenta pre via even a few contractions could have been the difference of me losing my baby or not! When the morning nurse came in she was frantic and my Dr was furious at that point we requested to please not have her anymore! Hang in there Brandi your doing a great job and so is Chris but Scarlett is just amazing! Also remember all Drs have different bedside manners and neurologists tend to be so smart but not very compassionate so try not to listen too much until you have the test results. As always lots of prayers going your way! Hugs!

Anonymous said...

As a nurse who work with babies, you know your baby more than anyone else. Trust your gut. If you don't feel comfortable with the answer you were given regarding or care or you just don't feel something is right you go find their Charge RN. Mothers intuition is a miraculous thing and will sometimes superseed the most skilled experienced nurse! I've spread your story throughout my unit and we have all been praying for you!

Krisy said...

My heart breaks at the thought of her in pain! I think of her daily, more than once a day, everytime i look at my twins which is thousands of times a day, i say a prayer for Scarlett!

Renee said...

idiot nurse! How annoying. I'm sorry.

Anonymous said...

I don't know how you're doing it! You're one strong family! My heart goes out to all of you. Even though we don't know you guys, we've been thinking about your Scarlett.

E. Lane said...

I'm so sorry that nurse didn't listen to you. Mother knows best.

Anonymous said...

I have seen so many posters on BBC with red siggys in support of sweet little Scarlett. We are all praying for a miracle.
My oldest son was in the NICU and I remember one night nurse not tending to his diaper very well. DH and I were new parents and did not realize the extent of it--the day nurse was angry and embarrassed about it and scolded the nurse responsible.
Remember that your instincts about your child are rarely wrong. Sometimes you have to fight the doctors and nurses to get the care you need. I hope that last nurse gets written up!!

Prayers for little Scarlett, every day!

jenny said...

I am so sorry your lil girl had to be in pain, and she couldn't tell you, as much as she needs pain meds and should have them, the best medicine for her right now is having you both there for her, feeling your touch hearing your voice, she is so luck to have you as parents and i think that is why she is pulling through. As much as you need her right now, she needs you so much more, and you are doing a excellent job!! Hands down you are 2 of the most amazing people, and i have never even met you, but your words are so beautiful and encouraging. Hang in there and just know that things will get better in time, all this will just be amemory before you know it.. Prayers as always and (((((hugs))))

Anonymous said...

Sending prayers and love from South Carolina. God Bless!

Anonymous said...

Bless her little heart. I am so sorry she is having to face so much in her few short months of life. We will keep you all in our prayers!

Anonymous said...

I'm praying for a miracle for your family!!

Brittany said...

Brandi, you are her advocate. You as a mother know if she's hurting deep inside you. If you think something is amiss, fight for it. Don't trust what you hear from nurses, first time around. They don't know your kid like you do. Best of luck.

The Sweatman Family said...

Seeing our children in pain is one the worst things in life we have to experience. When my daughter had to have a spinal tap...I just couldn't bare it! You are the best advocate for your daughter. She needs you! Stay strong!!

Megan Cox said...

It is amazing how you keep going as parents. People always asked us how we got through everything and we would answer "We just did what we had to". It is hard to think about things when you just want to get to the next step and make your baby better. Keep being your child's advocate...we learned more about the medical field in the 12 days Sabrina was in the hospital than we have our whole life. I could have suctioned out her breathing tube, fixed her PICC line, cleaned her arterial IV, and set all the machines to the right medicine levels to control her heart beat and blood pressure. I will continue to pray for you and Scarlett. She sounds like a tough cookie...must come from strong parents.

LC said...

My heart goes out to all of you. As someone whose baby has been critically ill in the hospital, I can understand a little of what you are going through. Keep your spirits high, celebrate each success, and allow yourself to feel whatever you feel at any given time. Hospitals do amazing things. Your family is in out thoughts and prayers.

araceli said...

I pray for your butterfly everyday. I also wanted to mention that I live in san jose anything guys might need I could help. I would also undestand if you might not want to security purpose. Well I'll keep checking blog and keep us updated. Much love for scarlett.

Anonymous said...

I found your blog through thebump.com. I recently became a mom and I can't imagine all that you are going through. I check your blog daily and send up prayers for healing for Scarlett, for you, and for your family. I love your photos of her and the way that you have seemed to retain a sense of humor throughout this situation. You are a strong woman and a great mother. While you have been blessed with the gift of Scarlett, she is surely blessed to have you as her Mommy!

Colleen and Mahkaylah said...

We prayed again for your little butterfly tonight. Keep strong Brandi. Scarlett is an amazing little girl already.

April and Roel said...

Still praying for Scarlett and for strength for you and Chris.

My husband and I have spent only 5 days with our son in a hospital as he underwent heart surgery. It is SO hard. All of the tubes and wires and beeping machines... and all you want to do is hug your child. I also remember feeling like I was in a Twilight Zone episode or something. Every one outside was going on with their lives and there we were hoping our son would be OK. Days went by very slowly.

I hope and pray that Scarlett's second surgery goes well and that you'll be able to step outside of the Twilight Zone very soon!

Amanda said...

I have been reading your blog and daily praying for your sweet Scarlett. I will continue to pray for yall.

Kinger said...

Hi there, it's Dawn again. Mike Marzano is my son's Sea Scout Skipper. You are all in my prayers every night.

I am a NICU RN and I can give you a few hints we use to detect pain in babies, including intubated ones. Facial grimace, furrowed brow, rapid heart rate, fingers splayed, arms extended or flexed, rapid breathing. If not intubated, vigorous cry. Hope that helps. I hate to see babies in pain. It has also been shown that there can be delayed healing and poor appetite (leading to weight loss) when infants are in pain. Hope that helps.

Anonymous said...

How do I start to type as I sit here crying to tell you that two years next month we were dealing with the same exact tumor with the same exact age with our now two year old little boy Riley. If I could just talk to you and share some of what we know now and how our lives have changed. Please take a look at our long and continuing story at www.caringbridge.org/visit/babybrilliant. Also, I know of three other kids in the US who have dealt with this angry cancer, two boys, one girl. One of the boys is george giakos and he also has a caringbridge site. The little girl's caringbridge is www.caringbridge.org/visit/abigailgracesteer. Until now, all of the boys (including Riley's) were on the left side. Abbi's was on the right. All of the parents are between 25-35 years of age and there is an older sibling of the opposite sex in each of the families as well. We are finished with the St Jude protocol that is still current SJYC07 and the link is listed: http://www.stjude.org/stjude/v/index.jsp?vgnextoid=77b6faeb7e0d7110VgnVCM1000001e0215acRCRD&vgnextchannel=4931bfe82e118010VgnVCM1000000e2015acRCRD. The one question I had when I talked to parents before we made our move to St Jude is 'would you do it again if you had to do it all over' and the question was yes from every single parent. We would also say yes. We will pray for your little Scarlett. I can only imagine how you feel and empathize with you and all of your family. I pray you will see your sweet little girl smile again. If you do not have time to do anything else at our caringbridge website, please look at the pictures that range from Riley's surgery until this fall....as they say, a picture is worth a thousand words.

Found you through a friend on facebook.
All the way across the nation in North Carolina.

Michelle Brilliant
michellebrilliant@yahoo.com

Anonymous said...

Wow Michelle, I sure hope Brandi and Chris get a chance to peek at the sites you posted. What miracles God has performed. Thank you for sharing with us all.

Anonymous said...

I know the signs of a baby in pain from personal experience. Watch her toes, if they curl under she is hurting, ask for pain med.
Donna Mora

Anonymous said...

Wow you are both so brave, strong, and amazing parents! You have one very lucky little girl that is just as brave strong and amazing as her parents.. You are all in my thoughts. Keep your positive outlook it will provide the best outcome. Jackie in VT

Leeta said...

You are so brave and so strong and your little girl is the luckiest in the world to have you as parents. Your family is constantly in my thoughts. Every time I see my son, think of my son I think of Scarlett and I pray for her, that she will recover and fluriosh. She's a fighter and she's beautiful.

Beth said...

From a parent who had their child in intensive care for three months, try not to beat yourself up too much on knowing and providing every possible need for your child. You do the best you can in a difficult situation. You hold on to each other through it all, with love and prayers.

aceycakes said...

our daughter was born 4 days after your beautiful butterfly, your story has touched my husband and i deeply.
we will pray for scarlett.
you are both strong and wonderful parents, don't lose hope.
andrea and paul baumgardner
xoxo

Erin said...

Sweet Scarlett and you are in my prayers every day. Trust your instincts! The nurses have lots of experience and training, but YOU ARE HER MOTHER. You know Scarlett better than anyone and you and Chris are her advocates on this journey. May the Lord surround you in His Love and Peace, May He Comfort and Strengthen Scarlett and grant her Healing. In Jesus Holy Name, AMEN!

Christine said...

I know it is hard when your baby is in the hospital, especially when they cannot tell you what they are thinking or feeling. As other commentators have said trust your gut and don't be afraid to repeat yourself. It is REALLY hard when you get a nurse who won't listen to you or one who makes it clear that they'd really rather you weren't around. You can ALWAYS talk to the charge nurse on the floor and most hospitals have a patient advocate team you can get to help you as well. A good nurse makes all the difference. It really depended on my nurse and what the situation was, but if I couldn't get them to see my viewpoint directly, I was more likely to talk to one of their nursing peers than the charge nurse. I never had a really major issue. I pray for Scarlett and think of her often. Wishing you all the best!
Christine

Anonymous said...

I have never been the religious type, but since I've been following your story I pray. I pray for your family. My heart aches for you. Stay strong!

Anonymous said...

As I sit here reading your entire story, I glance over at my 5 month old daughter asleep in her daddy's lap and I am trying to hold back the tears I have for your family. I cannot fathom having to go through something like this but your determination and strength for Scarlett is remarkable. I pray for you and your family...and will check back often for updates.

Anonymous said...

Just another follower making my daily visit as I have been since I heard.

Whisper in Scarlett's ear for me; tell her I said to hang in there - she's a fighter (even if I wish she didn't have to be) and some random stranger miles and miles away is thinking, hoping, praying and having faith that she'll be the one that amazes us all. I hold you in my heart.

Anonymous said...

I know I should be more Christian like? But I would have tore that nurses head off the next time I saw her! You are right, listen to your gut and even tho you dont know medical procedures, nothing beats the mother's gut. I know from experience. I wish you could hold Scarlett and kiss on her little head and cheeks. I will pray for this. I can almost feel you thinking "I am only strong in this because I have no choice, I would rather not have the situation where I have to be strong." I will pray for this also. Tell Scarlett how much we are all thinking, praying and send love to you 3. Bridget Cole

Bethany said...

Every time I get on here, my heart just breaks for you. Your family is in my prayers, always!

I had epilepsy as a child, and my Dr. prescribed me phenobarbitol (sp) and I had a bad reaction to it. It made me sooo angry! So I had to take Tegratol (sp)

That being said, I can not believe that nurse told you your baby was just snoring when she was in pain!!! As pp said... should be more Christian like, but I would have been furious, and I am sure I would not have been nice! You are so strong in this, and I admire you so much! I don't know how you do it... and you seem so calm!

GarnerFamily said...

Found your blog on the WTE boards... So glad that we did. Praying for your sweet Scarlett Grace and you all. God will heal her- he performs miracles each day. Our second son, Cooper almost died at birth and we were told he may never have brain function. Today he is a healthy, happy, early milestone hitting fourteen week old trying to keep up with his big brother. If you have time, read our blog from September of last year and you'll see the power of prayer. Scarlett will be healed. Peace and prayers and love.
The Garner family.

Brady and Rachel said...

You do not know us either, but please know that there are so many, that you don't know that are praying for your sweet baby girl! We can't relate to what you are going through, but we do have empathy for you nonetheless during this time. Scarlett seems so strong and such a fiesty little fighter. We KNOW God is there and is watching over her and you guys. We pray that you will feel the peace he has to offer you through the long days and nights ahead. Love and prayers coming from Oregon.

Lisa Benson said...

You are your daughter's best advocate, keep up the good work. Don't be scared to speak up if you think something isn't quite right, don't be scared to question the doctors and nurses if you think they are doing something wrong. It is hard sometimes to not feel annoying doing that, but it's what you are there for, you and the doctors and nurses are a team, it's important for you to give your input as a parent. *hugs* lots of prayers heading your way. Miracles do happen (my daughter is proof of that). And again, keep up the good work.