Friday, February 11, 2011

RSV

Scarlett officially has RSV.  For those without little kids, RSV is a very common, very prolific but somewhat serious respiratory infection that is rampant among small kids.  From what I have seen, about two-thirds of babies get it in the first year, and 20% of those are hospitalized for it.  We saw many RSV babies in the PICU before this, but never like this:
That is my poor baby inside of a plastic tent, inside a second plastic tent, receiving a breathing treatment that is supposedly going to help hurry her RSV recovery.  She is in the tents for 6 hours.  I cannot take her out or get to her for 6 hours unless it is an emergency.  She is currently crying and kicking because she lost the pacifier, but that's not an emergency.  I also have to wear a mask while the treatment is being given, and we will have to change all the linens in the room when it is done, including my clothes.

The goal is to have her ready for chemo on Monday; the normal course of RSV treatment is about a week, but they are trying to push it to three days.  We need to get her as healthy as possible before we start chemo, while not waiting too long for the tumor to start growing back.  It's a losing battle that I have just had to succumb to.

52 comments:

Lissa said...

Its 2:30 am on the east coast. I should be sleeping because my child will wake up at 7 no matter what. But my thoughts are with you. Its so hard to watch them struggle. At least the tents aren't causing her pain. She's just like you, angry and frustrated. Talk to her about all the things you two are going to do when all of this mess is so distant a memory you will wonder if it ever happened at all or if it was a dream. Tell her about the pedicures and baking chocolate chip cookies. Riding coller coasters and building sand castles. You'll get there before you know it.

Kimberly said...

Poor baby, I feel so bad for her. I hope she can get over this RSV asap. I hope you can give her lots of love in between these treatments. I wish you could get to her during them as I'm sure you do as well. I hope she knows that you are there. Praying for you all.

Anonymous said...

I'm so sorry. I pray for the day you are all done with doctors and get started with planning her birthday parties and taking her out on the town.

Anonymous said...

Prayers that she kicks this and gets started on chemo, fast! I share her story on FB, getting her all the T&P we can! I don't know you, but as a fellow "bumpy"....Miss Scarlett has my heart!

Sheila said...

Oh poor Scarlett. My heart broke reading about you not being able to get her the pacifier. Poor little love. I hope that the treatment for the RSV works, and that you are able to get to her as soon as possible. Loads of thoughts and prayers your way.

Anonymous said...

My heart aches for you. I can hear the frustration in your words. Why, oh, why does Scarlett have to endure this, too? I don't have an answer for this question, but I am praying with everything I have that she recovers from this quickly and is able to take the next step in her recovery. Brain tumors are hard - it's always two steps forward, one step back. Just keep stepping and know that you are being thought of and prayed fro each and every day.
Colleen

Anonymous said...

This sucks. Our little girl was hospitalized for RSV at 3 weeks, but she didn't have the other health concerns your little butterfly has, so obviously it wasn't quite this serious. We've been thinking about and rooting for all of you, and I will continue to pray. Be strong guys!

RLC said...

My heart aches for you Mama. To not be able to give your baby her pacifier when she needs it or hold her for 6 hours...I am so sorry. BUT! You and Scarlett can DO THIS. You are doing it. Everyday that goes by is one day closer to a healthy and cancer free Butterfly :) I think of you all the time and I hope you can feel all the love from all of us who are praying. In fact I am sitting in a class right now typing this and praying for you and I have to go b/c I am about to start crying. Stay strong you guys and much love to your sweet little girl. <3

katy said...

I hope Scarlett gets better soon so she can start chemo. Hang in there, mama.

Meredith said...

Praying for a speedy recovery from RSV and strength as she starts her chemo.

sarah said...

Praying for STRENGTH for all three of you-keep fighting!

Connor's Mommy said...

Praying for you all.

Shannon said...

Oh sweet little Scarlett, I can't imagine how frustrating this is for all of you. Let's hope that this is the biggest bump in the road that she will encounter during this whole thing. Thinking of you all...

bobwendi said...

As hard as it is to see Scarlett in a tent for 6 hours at a time without physical contact, it is 6 hours that the treatment is healing her. I don't know if it's possible, but try to focus on the 6 hours as healing time and not Scarlett being all alone and screaming.

My son had major abdominal surgery at 2 1/2 months and it was pure hell seeing him screaming and not being able to do anything to help him. (I wasn't allowed to pick him up, and all he wanted was to be held.) All I could do to try to stay sane was to keep telling myself that he was healing by the minute. It was hard, and it didn't always work, but I did try.

Sending many, many prayers and hugs from So Cal! :)

Anonymous said...

I agree, talk, sing, to your little love. She will know mommy is there. Praying for you and Scarlett.

Sandy said...

Stay strong, Brandi. So sorry for the set-back. Nothing harder for a mom than hearing your baby cry and not able to do anything to make them feel better. My heart is aching for you and I am sending even stronger vibes your way.

devon said...

Praying for you guys! I cannot imagine having to just listen to her cry. Hang in there momma, her best days are ahead of her. Like Lisa said, talk to her lots about all you'll do in the future. There will be a day when daddy is stressing because of her choice of boys, rejoice in that! This will all be a distant memory. Praying for strength!

Cole's Mommy said...

So sorry this has happened to your poor baby! She is super strong and will recover in the 3 days from the RSV that they are shooting for! It sucks just sitting and waiting though!!! Hang in there!!!

Anonymous said...

I am so sorry to hear that little Scarlet has had this set back. You have gone through so much already and as hard as this must be I BELIEVE you will get through this as well. Stay strong mommy and daddy and sweet baby girl. My prayers continue for your family. Nana in VV

Kelso said...

Ugh! That is so hard on you all... My daughter had RSV a few weeks ago, but not severe like sweet Scarlett. Praying for a fast recovery..

Paula said...

Hang in there!!! you cannot give up, you all are so brave!! Scarlett is amazing and she will do it!!! Little butterfly, praying for you sweet baby! Lots of prayers and love going to all of you guys. xoxo

Jen D. said...

Up and down and around...you are all in my thoughts. You guys will get through this.

Shannon said...

Oh, that breaks my heart to read. Praying that she gets better very soon so she can start the rest of her treatments!

Andrea said...

Saying LOTS of prayers. I am so sorry! :( Hugs!

Logan said...

I can not even imagine!!! I'm so sorry you have to endure yet another set back in her healing....but just remember she is healing and she will be laughing and cooing in just a few short days!!! Keep fighting Scarlett!!!

Alli said...

Keep your chin up! Many prayers are coming your way...

Angie said...

Oh honey, my heart is with you. I can't imagine how hard it is to go through what you have been through and what you continue to struggle through. I'm praying for you. Keep hope!

Anonymous said...

I just wanted to send out my thoughts and prayers to sweet Scarlett and her mommy and daddy! I hope she recovers quickly!

Anonymous said...

When will you guys catch a break... :( praying for you all

Anonymous said...

I pray for continued strength for your family

Amy said...

She definitely has lots of prayers going up for her. We will all continue to pray that she makes a fast recovery and can kick chemo's butt next!

The Chung Family said...

Oh Mama! Praying for you guys!

Anonymous said...

Brandi and Chris, remember you are the parents. My granddaughter(19 months) is in the hospital at the moment with RSV. So far her IV was so tight and turning her hand purple and my daughter had to say something several times to different nurses until they took it out and now it is bruised and cut into her arm. My daughter said they never even cleaned it (so I did it). I also went through acute lymphoblastic leukemia with my sister when she was 52 and there were times when we had to be forceful to get her what she needed (IV port was infected, move to a different hospital with better blood supply, ice cream, more drugs etc.) I don't understand why you couldn't reach in with washed hands and give her a pacifier unless they didn't want the pacifier interfering with her treatment. God Bless the caregivers but YOU are her champions. We were at some top hospitals but doctors and nurses are human, often running on little sleep. Recently my other sister's doctor tried to prescribe an antibiotic to her that she is severely allergic to. Just remember you are as important in Scarlett's healing as the doctors and nurses. You love her more than ANYONE else. God Bless All of You. Many loving thoughts going your way from a loving Grandma in Indiana. My daughter and I pray for you every day.

Michelle said...

Poor Scarlet and her paci. :( It broke my heart reading that too. But as others said. Keep talking to her and singing her favorite songs to let her know mommy is near and not going no where. She is so blessed to have such an awesome mommy and daddy. And you are blessed to have such a sweet little girl.
Stay strong. So many thoughts and prayers are coming your way.

Shan said...

Sending you love and hope for a speedy recovery for Scarlett.

Tara said...

Sometimes the greatest pain is to be strong enough to carry another person when they are too weak to carry themselves. Just when you think you don't have the strength to be strong any longer, know that you are not alone tonight. You, Chris and Scarlett are in all of our thoughts, hearts, and prayers constantly and try to draw strength from us. When you hold Scarlett again, tell her how hard it was to know that you could not comfort her and that no matter what, you will always be here for her. Sometimes you might seem out of reach, but you are always right here.

I also agree with another person, why can't you reach in? If you scrub your hands and arms and are considered clean or sterile, then you should be able to reach in to help comfort her, right? Or is it because by reaching in ou would release some kind of treatment she is inhaling? We love you all very much and continue to pray.
Tara - Washington

Rose said...

GO SCARLET GO! This little trooper sure is a fighter! I have faith in the little super star!

Jamie said...

You poor darlings. She will make it through this though. God is good and he will continue to take care of her. You continue to have our thoughts and more importantly our prayers.

Anonymous said...

Hang in there, Brandi. We're still praying for you every day. I'm confident you'll look back on this new situation as just something in the past that you got through, as you have with so much now. Keep going! :)
Love, Jen (October 2010 mom)

molly (from BBC March 2010) said...

This is a situation that made me think about your "mom up" post from a few weeks ago. It must be so hard to see her in those tents, but at least she is in the hospital getting treatment. I'm sorry she has to go through this additional stuff. Like surgery and chemo aren't enough! I know it's hard on you, so sorry you all have to go through this.

Jenny said...

I'm so sorry sweetie, our little guy had RSV at 4 months. Scarlet is a fighter and so are you guys. You are constantly in my prayers.

Anonymous said...

Hang in there! You can all get through this! "Mom up!" as you said! Scarlett just had a big tumor removed and survived that just fine. She can kick this virus too! You can do this, all of you! Lots of prayers coming your way!!!!

Christa said...

Continued prayers for your family!
Christa - oct 2010 mom

Anonymous said...

So sorry Scarlett is sick. It is full swing RSV season right now, so not suprised that was the culprit. Must be virasol/ribaviron that she is getting. I didn't know they still used that stuff. I was a pediatric RN for 17 years, now working in OB. We used to aerosolize that directly into the outer tent and let parents and nurses in the room and caring for the baby without any protection (this was in the 90's) After many years of this they started using the double tents with scavenger devices to suck up the excess medication. Always astounded me that we had to protect staff and parents from it, yet blew it strait into the baby's face. It did seem to help though. Continued prayers for sweet baby Scarlett. This too shall pass. Hope you and Chris have had your t-Dap vaccines (speaking of whooping cough).

Anonymous said...

So sorry to hear that, i never really heard of RSV before, but i pray and hope she recovers from this thing as soon as possible! Poor little thing!!!

heather said...

My heart goes out for you. You are an amazing and strong family and I feel blessed to be able to follow along. My prayers are continually with Scarlett, and the whole family.

April and Roel said...

Praying for Scarlett to get over the RSV quickly. Another bump on the road to recovery, but I believe it is just a bump. Hang in there Mama & Papa!

Sandra Lynn said...

Poor little angel!!! I'm so sad about this set back and especially for you guys. Heart broke at you not being able to get her pacifier for her. I pray for a speedy recovery and a positive start to her chemo. Much love to you.

Anonymous said...

Bummer! Hope the plan stays on track. Praying for her as always!

Bev said...

I hope that Scarlett gets to feeling better soon. I cant begin to imagine how hard that has to be for you to see and hear her upset and not being able to comfort her. My thoughts are always with your family!

Anonymous said...

I am SOO very sorry that poor baby girl is sick. My heart breaks for that little sweetie and it also breaks for you and Chris. Please stay strong, as hard as it is, we are all praying for your little one's recovery.
God Bless you all
Noelle
Cafemom July 2010

Anonymous said...

i would never be able to go through this with my little sweet baby without constant tears.praying for your scarlett.YOU CAN DO IT!!!<33