Wednesday, January 5, 2011

RSV: ' The Work of Breathing '

In the book Home Game, Michael Lewis has a short essay on his son Walker contracting RSV at age 11 weeks from his older sister, who, he says, kissed her little brother when she had what was just a cold for her, and he 'promptly lost the ability to breathe.' A short and powerful sentence that underlines how hard this virus is on babies, and how god awful it is to watch your child struggle for breath. Ever had serious 'retraction' going on, which is when they are breathing so hard that you can view the top of their stomach, above the rib cage, sucking in a good inch, their nostrils flaring and the small sweet indents around their neck collapsing inward with each inhalation of air.
In the ER, after listening to the doctor talk about the diagnosis, what it means and what it could mean, he said we could be admitted to the hospital, or go home. We don't know what to do, we said.
If it were my daughter, he replied, I'd admit her. We thought we'd be there for a day, maybe two. At that point her oxygen wasn't low. She was having hard 'work of breathing', they call it: how hard is the body working to keep up a normal supply of oxygen, and is it keeping up a normal supply? That night, Mr. Curry stayed up all night watching Ever sleep on my chest, her head bobbing up and down dramatically with each breath, and each breath coming faster and faster. By the next day, she was on oxygen and unable to nurse. Her tiny mouth would suck weakly once, and she would slip back into sleep. She slept for seven hours straight, to exhausting from breathing to do anything else. At this point an IV was needed. It took over the course of an hour, with four different nurses and doctors in Ever's arms, legs, feet and hands before a cardiologist was called in and finally was successful in inserting the IV. Mr. Curry and I took turns rubbing Ever's head and talking into her ear as she screamed as they pushed the needle into her. Later, we had to again let her be poked for blood samples. And later again, for an oxygen vs. carbon dioxide test. She was traumatized and is still fussier, needier and less secure than she was before that day. As the group of doctors and nurses hovered over her and I kissed her cheek, she would find them with her eyes wide open. She would seek them out with those blue eyes, actively looking around until finding a face, and then staring at that doctor or nurse while crying. It was astonishing to me. It was as if she was asking who was doing this to her, and forcing them to acknowledge her. I am here, she was saying, and this is hurting me.
The results of the test came back and were not good. Desirable or acceptable would be in the fifties. Ever's score was in the seventies. The doctor came into our room. We are probably going to have to ventilate her, he said. We asked our questions and he left with Mr. Curry and I staring at the floor, dumbfounded. Our infant on a ventilator? When illness happens this quickly, it is hard for the mind to keep up as a small amount of shock begins to factor in how well your mind is processing information. Two days ago we had a baby with a cold. Now we had a baby on oxygen, unable to eat or even stay awake because her body was working so hard to just breathe, a baby traumatized by repeated stretches of fear and pain who would now most likely be ventilated. We cried.
The worst part of this virus is that babies can just stop breathing. The doctor had said that to us on admission, and I could not stop hearing it over and over. Finally I had the doctor come in and asked many questions about exactly when and why this happens. He explained to me that usually the stop breathing happens before the baby even seems very sick, and we were past that, OR, when the baby IS very sick and works and works to breath and finally their bodies just give up. We didn't have to worry about that, either, because that is why Ever was hooked up to the oxygen and the three 'leads' on her chest which showed us every second of our stay Ever's respiration rate (high), her oxygen (initially low) and her heart rate. The ventilator was necessary when a baby kept working too hard for too long, and the carbon dioxide levels began to rise in their bodies.
A NICU nurse came up into Ever's room after hearing about her case, and recommended we try another treatment before ventilating. This treatment was high pressure room air mixed with oxygen, which went through the machine and up into Ever's nose, in addition to Albuterol every two hours inserted into the same machine and vaporized into the air stream. I had another infant in this situation two weeks ago, she said, and this did the trick.
Thank God, it did for our baby, too. This intervention is what turned Ever around, and finally, her breathing slowed, finally, she began to wake up, to root. The first time I said 'want tootsies?' to her and she turned her head to nurse, I almost cried with relief and joy. She was healing.
My mom showed up downstairs for a visit with the kids, and I left. We did not once let Lola come up to the hospital room. Her anxiety would have been triggered terribly by seeing Ever with the tubes and machines. We told her simply that Ever had to stay in the hospital because they had better snot sucking machines than we had at home, and she accepted this. Working to keep Lola from having severe anxiety was our second job, after keeping Ever safe. We came up with plans of actions and between Mr Curry, myself and my mom- who kept the kids the entire week- we were able to keep Lola feeling safe and busy with play dates, new toys, funny movies, and daily visits with both Mr. Curry and myself at restaurants near the hospital or the cafeteria. Lola and I played hangman, drawing games and tic tac toe. The first overnight, my mom Lola and I sat at Einstein bagels and made a list of happy things for Lola to look forward to in the upcoming days. Since this hospital stay happened the last week of Lola's vacation, I promised her two days off school if she was brave and did all the work I gave her to do to help herself feel good and reduce anxiety. She did a GREAT job ( supported so wonderfully by my Mom ) and is now sitting next to me on the floor on her first day off school.
Only one parent is allowed to stay overnight, but the hospital staff ignored the fact that Mr. Curry and I both stayed overnight Ever's entire stay. After the first night where Mr. Curry stayed up all night, we took turns sleeping. Mostly, Mr. Curry slept in the hide a bed at night, and I scooted the rocking chair and another chair together and made a makeshift bed with pillows and a blanket and slept next to Ever's crib. In the early morning, Mr. Curry would take over and I would sleep on the hide a bed for three or so hours, to wake a few times to nurse Ever. We were absolutely exhausted. Mr. Curry was able to be with us five out of seven days, only working the two days. Thank god we are such a good team. We took turns being overwhelmed or gripped with grief at seeing our Everkins suffering. We took turns giving up and we took turns being strong and we snuck ass grabs and kisses once things got better. The staff was amazing at Kaiser pediatric unit. The nurses by and large were intelligent, on top of it and totally kind and supportive. We had two doctors who impressed both of us with their intelligence, information and bedside manner.


This was one of the longest and worst weeks of our lives, and I am thankful beyond words that it is over. There were cancer patients on our pediatric ward, and I thought of them as we left. The freedom to scoop Ever up, finally free of the many wires and leads that had left us only able to hold her within one foot of the crib, is such a blessing, one that many other parents are not experiencing as their child battles a more serious disease. The curtain fluttered and lifted for us this week, but gently rested back down. We do not take this gift as our right or for granted, but realize it is but luck, but a random blessing, and no matter how hard life gets, we are never unaware of the deeper and most important blessings we have.
Hannah Stephenson said...

So glad to hear she is on the mend. Hopefully you and your family can rest and relax a bit.

Petunia Face said...

I have tears in my eyes from reading what you all went through.

Being a parent is so horribly scary and treacherous. Loving something so much...there are just no words.

Hugs to your whole family.
S

controllingaspicyuniverse said...

That last paragraph is beautiful beyond words.

Thank God for nurses...I seriously think they're divine helpers. Big kisses to you all.

Shelley E said...

It's a horrible experience, isn't it? I went through the same thing with my son...10 days at Choc- 4 in the NICU...so scary. I am so glad she is home safe with you...take care

jaykbee said...

I'm glad that things worked out. I've had the experience of a loved one in ICU and hope to never have it again. God bless you all

Darcy said...

i am so happy for your family! i cried as i read this, i can't imagine the fear you guys went through and am beyond words glad for you!! to ever!

Angella Lister said...

you have been through so much. so glad you are on the other side of all that, and that ever is home and breathing well again. much love.

Sara said...

God Maggie, I'm sobbing. My little Jonah had RSV at 6 months old, and it oNLY meant a nebulizer for almost three months. How harrowing this week must have been for you and Mr. Curry, and how beautifully you write about it. So much love from Michigania.

Annie said...

Hi Maggie,

Thank you for sharing this. I went through a different, but similar experience. I lived at the hospital with my son for three weeks, starting when he was eleven days old. He was in traction for three weeks, before getting a series of two casts for dislocated hips.

We are both blessed. The interventions for our babies worked, and we brought them home. I'm glad you found the right nurse, and communicative doctors, and that you had Mr. Curry to be there with you, and your Mom was there to take care of Lola and the boys. I'm so glad Ever is well.

Ms. Moon said...

There is no nightmare like a sick child or baby.
And you have gotten through it.
I am loving you with all of my heart. I am so glad all is well.

clearness said...

This part......"she screamed as they pushed the needle"....makes me so mad. Why didn't they spray her hand or foot (feet and foreheads make better IV's than hands...just my own experience with an infant in PICU) with a numbing spray to start the IV is beyond me. I get so mad that people say "They are only a baby and won't remember it" or when they say other crap about the pain and babies don't feel pain in the same way we do.... Joey felt it and I know Ever did too and I wasn't even there. I wish I could have been there to stop those nurses and demand they do something for pain before starting the IV. There are numbing patches and sprays........and while it's painful for mom to actually see the IV in the forehead (I'm still traumatized)......it's a stronger vein and hurts less...........Ggrrrr!!

Great big giant hugs for you and Ever and Lola and the whole family

Allison the Meep said...

Seeing your child sick and not being able to take that pain from them is so hard. I'm sorry you all had such a scary and difficult week, and so thankful that it's over for you.

svasti said...

Oh! This story almost broke my heart, to see a sweet little cherub so unwell and all trussed up with tubes like that.

I'm so very glad that she is better now, and you all survived in tact. Take care! xo

Courtney said...

So happy to hear she is home and getting better!

Vodka Mom said...

I have been thinking of you all every minute of every day. I send my prayers and my love.



strength, love, hope and peace.

N2 said...

This was so scary. So happy to read that you all made it through in good shape. x0 N2

sherri said...

so glad she is ok. I've tried to come over here several times lately and comment but something has glitched it each time. Glad to make it back over to read this hopeful post. Sending your family lots of love and healing thoughts. xo, s

Ellen said...

My heart goes out to you all! This has truly been a hard time and I am so very happy that Ever is home sweet home...you are brave, loving, thoughtful (for your children at home and all that planning as well as your support for your daughter). Life can sure throw some stuff at us that we can never predict or be prepared for. Take care each of you...

Paula said...

This is so heart wrenching to read... There is nothing worse than a sick child. Welcome home, you two and the babe.

Marion said...

I'm so glad y'all are home and Ever is doing better. To have a child is to forever have your tender, beating heart walking around outside your body. My 2 girls are 31 and 37 and I still worry about them....

Love, Hugs & Blessings,
Marion

izzabitz said...

I'm so thankful that Ever is doing well and is at home. Thank you for telling the story. And I have to say once again that she is absolutely beautiful!

Amanda said...

So absolutely happy she is safe and in your guys' arms again. Thinking and wishing the best.

Jenn @ Juggling Life said...

I am so happy she is okay.

This brought back such vivid memories.

My baby (now 16) had RSV and pneumonia when she was 9 weeks old. It is such a frightening experience and it completely changed my mind about how free I had been with taking my newborn (born in November) out and about in the world. Where I to have another one I would do things differently.

Dari said...

I am so glad that you guys are home and Ever is doing well. I have been so worried. What a scary thing that must have been. Thank goodness for modern medicine!

mosey said...

So scary and heartwrenching, and so SO glad that Ever is doing better. Rest well, you lovely family.

Elizabeth said...

Oh, yay, is what I say. Like a kid, Maggie. Now I wish you rest and peaceful thoughts that it is over and that you and Ever are well and together. Going through something like this with such a young baby is traumatic -- you need to rest and rest and rest and allow yourself to feel anything that might come up. I am so glad that all is well.

Mwa said...

And once again I'm so grateful for modern medicine and all the things available to us when our children get sick. I'm so glad she pulled through, and thank you for this post. I'm sure it will be helpful for many people. I hope you all get some rest and quiet time now. x

Elisabeth said...

What a journey you've been on. So glad the worst of it is over. Soon it will be but a memory, a story you will tell Ever over and over once she is older. For now she will grow.

a work in progress said...

How scary for you all :(

Glad to hear that Ever is recovering well. :)

Love to all xoxox

call me any name said...

I am so happy to read that you are all better. This reminds me somuch of the time when our premie baby had meningitis at 6 months. The doctors sent me three floors upstairs when they did the spinal tap so I would not hear her screaming and when I was allowed back she had the IV attached to her head as they could not find access anywhere else - and her little arms and hands and legs were all blue and black. I don't think this memory will ever fade. You will all come out stronger and closer from this experience. Life is such an amazing force.

starrlife said...

Seeing your child all hooked up to tubes and wires is a terrible thing, something that is very traumatic, almost inhuman. I remember it well. I am so happy that the baby is home and safe and sound! Hugs to you and Mr Curry (who I want to thank for all of the updates).

~Amber Elise~ said...

I am so glad Ever is on the mend and you guys are home. The hospital, while sometimes necessary, is hard on everyone. Your extra care with Lola is so wonderful to see, you seem so in tune with her and you know she needs that : )!

Petit fleur said...

Maggie and Mr C,

I'm so happy that this torture is over for all of you. I cannot imagine how hard it must be to see your little one all hooked up to machinery and not being able to hold her and just all of it.

You are wonderful parents and all of your children are amazing. Koodos to you mom for her dedication and great instincts with Lola. Lola sounds like she is learning to really use good tools to reduce her anxiety. What a kid! I'm almost 50 and I am pretty sure she is better than I am at the self soothing!

Just happy you all are home and together again, safe and sound.
xoxo

Evangeline said...

The NICU is a terrifying place...and a magical one (our experience there with the nurses was incredible too). I am so, so, so glad that Ever is on the mend!
Nothing worse than that helpless feeling when your child is seriously ill!
Hugs to you all, and especially to Lola for being so calm and brave (that was a great piece of parenting there, keeping her anxiety at bay. I can't imagine how much energy that must have taken under the circumstances! You and Mr. Curry get 2011's first parents of the year award for sure!).

All This Trouble... said...

I'm so relieved the worst part is over. Now you can ALL begin to heal. Much love!

Drax said...

You are fucking amazing, Maggie May Ethridge.

Bethany said...

oh gosh, how scary.
and for you to be able to write so clearly and with such heart astounds me.
so so glad the treatment worked.
hope you have a long long sleep in your soft bed with your babies and hubby close by.

Josey said...

I'm so glad she's home - God bless!

Shaista said...

I'm smiling, such relief to hear Ever's home and away from the scary tubes and ventilators and strange (though thankfully, kind) faces surrounding you.
What an unexpected New Year's Eve... here's to a better week. Sleep peacefully (does a Mom ever?) xx

Sarcastic Bastard said...

So scary, Maggie. Like you, we are all very grateful for the outcome.

Much love,

SB

Jeanne said...

First, I'm so glad she's better.

Second: You did a brilliant job of sharing what it was like for you. Reminds me a bit of that Lorrie Moore short story, Canonical Babblings in Peed Onk.

(You can read it here if you're interested:
http://jordansebastianbonner.com/wp-content/uploads/2010/04/Moore.pdf)

Chaos and love said...

You are so well read. I adore you. I sometimes feel I am in the nurses position in my job also. What a stunning discovery. The fact she heard about your Ever, took time form a hectic schedule, and took a chance on somethng that she had witnessed only once before....it lifts my heart.

Alli Easley said...

Oh honey, I'm so glad she's home. RSV is so scary. I time my babies so they're born in the last spring/summer but a couple of them were born in Feb/March and it scared me to NO end the second they'd sniffle. RSV only got to one of my 6 kids, but it got to him bad. Thank God she's home, that sweet sweet baby Ever. You're in our thoughts and prayers!

AmandaJo said...

I have such goosebumps that my skin actually aches. So glad for you, so very happy.

saracita said...

This brought tears to my eyes, too. You've been in my thoughts and prayers. I'm so glad that things are on the upswing. Ever is beautiful (as is her family.)

Phoenix said...

Holy God, this post is amazingly mind-blowing. Do you know how much you and Mr. Curry are super-heroes? To deal with all of this, and still take care of and nurture Lola...

Beautiful. You guys are so incredibly strong. I admire you both so damn much right now.

katiecrackernuts said...

You and your Mr are brave. I agree, those families with loved ones still in that ward ... my prayers are with them too.

Ida Mae said...

I am so happy that you are all home and healthy! What a scare, but you were on top of it, and it sounds like you handled it with such grace, both you and Mr Curry. Thank God for Grandmum's ready to step in!

I loved how you ended this post!

Michele R said...

I am so happy and relieved that she is better. Much peace and rest to your family.

Caroline of Salsa Pie said...

I SO admire your strength. Seeing the images of precious Ever hooked up to all the IV's put a knot in my throat. I kept her face in my mind these days and said prayers like so many others here I am certain.
Sending love your way, Maggie. Wish I could give you a big hug...

See Kate run. said...

Tears are streaming down my cheeks and I'm leaving this keyboard to watch my little one sleep.

Many blessings.

Freida Bee said...

I am so glad that ever is safe and well with you and your loving family.

thais. said...

your post and incredible but painful journey made me cry. so glad you are all safe and stronger with the way life happens.

YES Gallery + Studio said...

Beautifully written post. And the close-up photos of Ever really hit me in the gut. To see such a wee one holding up that burden. :( I pray this is the hardest challenge any of you will meet. As usual, you did it with grace.

anymommy said...

Oh, Maggie, I am so glad, so very glad for that scooping up and leaving. XO.

Lola Sharp said...

Oh my goodness...I'm glad Ever is doing better.
I'm sorry she (and you) went through this.

Keeping positive thoughts for you, Ever and your family.

May 2011 bring you all great joy and good health.

Love,
Lola

Barrie said...

I am so glad this had a happy ending. xo

Lora said...

my god.

I love you guys. I don't know what else to say.

This is terrifying.

Middle Child said...

I almost lost our youngest at 18 months from a deadly pneumonia which would not get better - I never want to go through that sort of thing again - it is so hard to be there and know there is a chance they may not make it - thats the chance we take when we love another human being 0 but a baby is so vulnerable - glad alls well

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