Wednesday, November 24, 2010

It's All In How You Look At It

Tomorrow is Thanksgiving. Paxton nor I will be home for it. We have been in St. Pete at All Children's Hospital since last Thursday night.

I have noticed ever since Paxton started crawling that he turns blue and his breathing is very labored. While I have been told this is very normal is a single ventricle baby, something in my gut was telling me it wasn't with Pax.  I kept mentioning it to anyone that was around and most of the time just brushed it off thinking I was overreacting. After all, just seeing Paxton crawl makes me become helicopter mom wanting to land all heroic like and save him from the struggle that merely crawling after his brothers is for him.  I want to just pick him up every time and take him where he wants, but I know I have to let him be a boy.

Annnyway, I noticed last Tuesday/Wednesdayish that he was significantly more cyanotic than even before. So I busted out the O2 monitor and spot checked him. He sat around 77.  Low for him as he is typically 85-87 percent O2.  My gut told me again that something wasn't right, but I didn't press the issue with my husband.  He also had an episode where we thought he was just cold, but in hindsight I see his heart was struggling, where his entire body turned as purple as a grape. No sooner was the phone in my hand to call 9-1-1 did he slowly return to normal.  Little itty bitty episodes are now all adding up to a big one.  Finally on Thursday I noticed he was not right. His feet were blue, lips a dusky dusky purple.  Breathing labored and cap refill time was extremely slow.  I put his O2 monitor on him again and made him lay down to rest while I called cardiology.  His sat's were running low 70's even hitting 69.  It was time to do something.  The dilemma was the local emergency room, cring! Or drive the two hours to St. Pete and risk something going wrong on the side of the road.

After going back and forth, watching Paxtons O2 return to normal, just as it had been during the week, I wondered if driving the two hours was the right decision. Was something really wrong or was I overreacting again.  He would drop and just as quickly recover. In the end we decided to be safe than sorry.  Nana Kimmie ran around like a mad woman while I stood in staring at him. I could not focus on anything but watching him like a hawk.  Nana would be our chauffeur while I sat and monitored him.  As luck would have it, we made it here with no issues.  Charity, my heart mom friend and confidant met us here at nearly 11 o'clock at night.  She came with a back pack full of anything we might need. She's been there done that more times than I can count, bless her heart.

And the wait began...

He was in the E.R.  right away.  Test were started.  The struggle began. He didn't want to sit still for O2, iv, or urine and rightly so.  Charity was my voice. The voice I didn't have because my heart was breaking so badly as I watched my son struggle with all that was being thrown at him. We arrived at 11:30 and were finally admitted and taken to our room around 4 am.  I had been up since 4 am that morning and was crashing hard.  Once we got up to CVICU he had an echo done that revealed nothing. Chest xrays showed nothing, blood work showed nothing.  I was frustrated.  I just knew something was wrong....

 (Note blue lips and feet just in this picture)


The doctors kept saying it's a virus. Yet he was completely asympotomatic other than the cyanosis.  They were treating him as if it were and yet he continued to turn blue for days, oxygen still desatting.  He had two contrast echos and another chest x ray that all showed nothing. 4 echos (3 sedated), NPO (nothing by mouth) for 3 nights straight and the confinement of a 13 month old to a crib.  My frustration was mounting. It had been 4 days, I needed answers.
So we decided to do a heart catheterization.  This allows obviously much more information about what's going on with his heart to be gained.
This morning at 8:30 am he had one done.

(Just out of surgery)

Paxton has right ventricular dysfunction. Meaning the only ventricle he has is not functioning as it should.  I was glad we found an answer and sad too.  His heart is big and it's struggling as he becomes the active little boy he has.  So they put him on Milrinone to help increase his heart function and we will reassess in two days.  We are hoping this is the answer and that tweaking his meds will help him get back to where he once was.  He remains on oxygen, iv fluids, milrinone obviously and is getting a blood transfusion as I type this.


It's been a looong, emotional week. It's hard to watch your little boy turn blue and not have answers. It's hard to hear them say it's a cold and know in your gut that it's not.  It's hard to be separated from family especially during the holidays.  It's hard to have to hold down your own child while he gets poked and prodded. To see fear on his face as they wheel him away for surgery.  Mostly, it just never gets easier to be in a hospital.  To know that this is "real life". When you just run out for a diet coke and see everybody going about their business while you go back to four walls waiting, just waiting for the green light.

Last year on this day we were packing to take Paxton home tonight for the first time in his life after living in a hospital for two months.  Today we have come full circle and are back right where we started.  I sure didn't see this coming. Hadn't planned on being right back here one year later. Course, I didn't plan on any of this past year, but I have learned that sometimes it's ok to have your plans fall through, because maybe, just maybe there are better ones waiting down the line somewhere...

Ahhh...yes life, as always, keeps me forging ahead, pushes me to my limits and reels me back in.  I cry and I recover. I get angry and then soft. I melt and come back stronger than ever. I am consumed by fear and just as fast with relief.  It's never ending all of these emotions and while I am exhausted, I am also strengthened.  Strengthened in my resolve to always try to see the positive. To know that there's always someone who has it worse.  To trust in the road ahead.  To cherish every. single. moment I am blessed to have with one of the most heroic babies I have ever known.


Count your blessings my friends...for surely they are plenty...it is after all, all in how you look at it.

Love
~J


6 comments:

Melissa said...

I am praying hard for Paxton and you. Tears running down my face. I am so sorry your having to go through this. What a STRONG BRAVE boy you have! He is simply amazing and beautiful. Thinking of you.

Melissa (Maccoy's Mommy)
www.yesallfivearemine.blogspot.com

The Simmons Family said...

Ok. So I'm heartbroken for you to be seperated from your family, but glad that you listened to your momma instincts. I've been there.. fighting to get Owen cathed because there was something "off". We'll be praying that Pax says adios to the Milrinone soon and starts to feel better.

Happy Holidays to you too!

cici said...

oh mommy..... what can I say? I am so sorry that little Paxton has been struggling, when I saw his precious little blue feet in the picture you posted I know how hard it must have been for you, but I am so happy that you knew in your heart that something was wrong. Now he is on the road to recovery and together you will come full circle again and home with your loving family.
Remember you are not alone on this Thanksgiving, I have you both in my heart and Prayers.
A thanksgiving day it is, in honor of Mothers like you.
God is watching over you, rest well sweet mama.

Neha said...

Heartbreaking to see the first picture. And I love your smile and the courage that shines through it.

Hope and pray that Paxton goes home, safe and sound very soon!

Love and hugs

Anonymous said...

I started reading your blog in August of 2009 when I saw a link on Terrilyn's blog. I start every morning looking at your web page. My prayers are with Paxton and your family.

~Jamie Kubeczka~ said...

I am saying a pray for Paxton and your family. I hope he gets better soon and you all can get back together. I can only imagine how hard this has been for you. Keep your head up, as you're one strong mama.

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