Better Place

Music is something that helps me every day.  While in the hospital with Max, I heard a song from Rachel Platten, "Better Place"...the lyrics are probably about a crush or romance but for me, it expresses how I feel since my children have come into my life. I'm not the best singer but started singing this song to both kids to express how much they mean to me.  It is a better place since they've been in my life, regardless of the struggles and mountains we've faced. I seem to get an expression and reaction from Max each time I sing this to him (audio here https://www.youtube.com/watch?v=50gPTzjhmhA):

I'll tell the world, I'll sing a song
It's a better place since you came along
Since you came along
Your touch is sunlight through the trees
Your kisses are the ocean breeze
Everything's alright when you're with me

And I hold my favorite thing
I hold the love that you bring
But it feels like I've opened my eyes again
And the colors are golden and bright again
There's a song in my heart, I feel like I belong
It's a better place since you came along
It's a better place since you came along

I see the whole world in your eyes
It's like I've known you all my life
We just feel so right
So I pour my heart into your hands
It's like you really understand
You love the way I am

And I hold my favorite thing
I hold the happiness you bring
But it feels like I've opened my eyes again
And the colors are golden and bright again
And the sun paints the skies and the wind sings our song
It's a better place since you came along
It's a better place since you came along

Now I'm alright, now I'm alright
Everything's alright

Cause it feels like I've opened my eyes again
And the colors are golden and bright again
There's a song in my heart, I feel like I belong
It's a better place since you came along
It's a better place since you came along

The month of February was a scary one for us. Just when you think you are doing everything you can to stay out of the hospital and you have all of the equipment needed at home to keep Max comfortable...the unthinkable happens.  Max was rushed to the emergency room on Feb 3rd because he couldn't breathe. His home health nurse saved his life and kept him stable until the paramedics could get there.  We are so grateful she was there that afternoon. Although x-rays never showed that the pneumonia was completely gone, clinically he was doing better and had slowly been able to do more and didn't seem to be in as much pain. We thought we were on the right track.

When I got the emergency call, I was at work and ran out of the office and sped to the hospital. Once at the hospital, Max was put on a ventilator. That was the scariest decision to have ever made - although there wasn't much choice for him.  We weren't sure if he'd ever come off when we made the choice to put him on it. The ER staff was amazing - told us what was going on and what was happening. I had held it together until we made the choice to put him on the vent...in my mind I wasn't ready to lose him and to have to make a choice to keep him on or take him off in my mind was too much. Seeing his lifeless little body on the table was terrifying and I lost it and had to sit down because I thought I was going to pass out - it caught up with me. How did this happen so quickly? It turned out that Max had both bacterial pneumonia AND RSV (which can be a cold to most people but in small children, it can take their life - even kids without Krabbe).

The days to follow were very up and down. Some days he was doing great - other days they couldn't turn the ventilator up much more without harming his lungs. He went into the hospital as a one year old and came out a 2 year old. On his birthday, he had a good day. His stats were good. He got to meet Ironman and we had a small family party celebrating Max. We decorated his room in a superhero theme and everyone who came into his room smiled.  The Monday after his birthday, we didn't know if he'd make it through the night the way the doctor was talking. Somehow this little superhero decided that it wasn't his time and he fought to a point where they thought they could take him of the ventilator. They told us the vent wasn't doing much so they thought they'd try to take him off.  That first 24 hours were very up and down.  Everyone would come racing into his room because his stats would fall so low and then slowly his numbers would return to normal slowly on his own. Since we had been in the hospital, we hadn't had the opportunity to hold Max because there were so many wires and tubes and lines connected to him. It had been a rough night after taking him off of the ventilator and the doctor that morning during rounds asked if we had held him yet - I told him I wanted to. I held Max for 3-4 hours and then Josiah got to do the same.  You could see him relax...his numbers stabilized...the doctor came in and looked at both of us..."I can do a lot of things medically to help him...but I can't do that. Good job, Mom and Dad." Tears filled my eyes.

It took another 4-5 days until Max was stable enough to go home. The doctor told us that for most kids, they wouldn't be released because he was still on oxygen and other things...but because of his condition and because we basically have a small hospital of equipment at home, we could take him home if we were comfortable to do so. I have to be honest - I was nervous. I didn't want this to happen again but I was so grateful to all be under the same roof again.  No more trips back and forth from the hospital...no more trying to find out who to keep Emma if both of us needed to be at the hospital.  No more worrying from home when it was my turn to be home and Josiah was at the hospital. He did great and slowly we got back into a routine and we were happy to all be home.

In the weeks to follow, Max was assigned a local pulmonologist who has given us a game plan of what to do when he is well, getting sick and sick...so his lungs stay open and clear. It has worked well...I found myself getting the flu shortly after being home - my body shut down with little sleep and finally just being able to be home. Max was starting to get junky again, probably because of my illness - but the treatments helped tremendously and he seems to be back on track.

We are back to our "normal" which to most people is anything but normal. We are grateful to have more time on Earth with our son. It was an emotional rollercoaster but we wanted to thank all of the most amazing nurses at Banner Thunderbird and his doctors in the ICU.  Everyone took care of Max and us.  They helped us all through tough and weak moments but we were able to joke and laugh during the good moments with them.  Thanks to all of our family and friends who helped with Emma, visited the hospital, sent us care packages, sent Max birthday gifts and sent messages, prayers and love.  With such an amazing amount of love surrounding our family - we are able to get through the hard times and come out stronger.  Thank you for your support.  There are never enough words to express our gratitude.

We are looking forward to taking Max out again soon and celebrating each day as a complete family. We are in a "Better Place" and hope to stay here for awhile.

~Allison