Saturday, June 29, 2013

Face of Pneumonia

This is the face of pneumonia. :(

At least his lips are nice and pink and his oxygen levels are good. He's not struggling to breathe, and he's surprisingly not very junky sounding. We've seen this change in a matter of minutes so we need to keep a really close eye on any signs of respiratory distress.

Here's a picture of the butterfly bush that was given to Ollie my one of his favorite nurses. It's starting to bloom. :)

Friday, June 28, 2013

Losing battle

Oliver has pneumonia.

6th time in 3 months.

He only finished his antibiotic on Wednesday and had clear lungs for a total of ONE day. Every bout weakens his lungs more and more making him even more susceptible to it happening again.

It's a losing battle.

Thursday, June 27, 2013

All went smoothly

The procedure was super duper quick and Oliver was a trooper(of course). He wore his batman shirt because batman isn't afraid of GJ tubes. He was very sleepy from a dose of diazepam, there were no complications and the Dr said the tube placement is "perfect". Now we're heading home to rest and recover. Thanks for all your well wishes and prayers.

All done!

Kisses from Dad

Inside my belly

Dad picking me up

Batman is all done, time to go

Sunday, June 23, 2013

Another rough night

We were up with Ollie again last night. Lots of coughing trying to clear his throat and a high fever. Lots of gross suctioning to try and help him. This pneumonia is really taking a lot out of him. I'm not exaggerating when I say he's been sleeping for 4 straight days. We've barely seen him open his eyes at all, and yesterday they looked strange and unfocused again. :( The GJ procedure is still set for Thursday at Connecticut Children's Hospital as long as he doesn't have a fever and he's pretty stable.

Here's Ollie being held by his Auntie Angie, along with Grammy, Grampy, Auntie Jess, cousins Tyler and Abby and Uncle Steve all stopped by for a few hours. And I think Uncle Greg will be by later. Ollie loves when everyone fights over holding him. :)

Saturday, June 22, 2013

Early Morning

After a very uneventful day, with no fever, easy breathing and minimal junkiness we're up with Oliver in the middle of the night battling all three.

We've used 5 different medicines, suctioned a good deal and now he's hooked up to oxygen and covered in cool wash cloths while I rock him in the brown chair.

Friday, June 21, 2013

His eyes are responsive again! He can see us!

And his breathing is improving too.

Thursday, June 20, 2013

Pneumonia. We're starting the antibiotic that has worked in the past.

And he's unresponsive to a flashlight being shined into his eyes, he's just staring off into space. He might be losing the last of his vision. :(

Rough morning

Oliver is struggling to breathe this morning. His respirations per minute are very high and he's very junky sounding, at one point his feet started turning blue. We tried postural drainage but he had even more trouble breathing while laying on his side. We've used a few different rescue meds and Daddy is holding him. All signs point to pneumonia.

Yesterday we scheduled his GJ tube procedure, it's on the calendar for next Thursday.

Sunday, June 16, 2013

Looking for Ollie Care

Chris and I need to go back to work in late August so we're working on finding care for Ollie. He'll have his nurse with him at all times to tend to his medical needs, but our insurance won't allow us to leave the nurse alone in the house. (I know, how stupid).
So we're looking for someone to cuddle, read books, watch cartoons, play with toys and go for walks with Oliver and his nurse(who is super nice), maybe vacuum and do a load of laundry. The hours will be from 7:45-3:30, except Monday and Thursdays, if he's well enough to go to school on those days, we'll only need the babysitter from 7:45-12:00 because he'll be going to school in the afternoon with his nurse. We'll be able to pay the sitter $9/hour. If you know someone loving, compassionate and reliable, that might be a good babysitter for Ollie, either for a few days a week, or all 5 days, send us a message on his Facebook page or email us at

Thanks Team!

- Posted using BlogPress from my iPad

Saturday, June 8, 2013

Close call

I don't have the emotional energy to write a long post but I thought a quick update was needed. A few days ago Ollie started having major seizures again, despite the fact that he's on 3 different anti seizure medications. One episode was so intense that he completely stopped breathing. He almost died, we starred down at his sweet pale face, absolutely helpless and waited for him, begged him, to take a breath, he just laid there lifeless for nearly a minute. Until out of nowhere, something in his brain finally decided "No, I'm not ready yet, I'm going to keep on fighting" and he started breathing again.

His hospice team suggested we start discussing final arrangements for him, because although we could very well have years and months to love and hold him, we could also lose him at any moment. You just never know with MLD. Late infantile MLD takes children as young as 2.5 years old and as old as 9, the average is 4.8years old. Ollie's MLD is among the faster progressing mutations so we truly need to enjoy every minute we have with him.

But how do we plan final arrangements for our 3 year old son? Our sweet baby boy? How do we sit down and discuss the unthinkable? He just joined us in this world a few short years ago, how unfair that his journey should end so soon. How do we talk about him being in a cemetery as we rock him to sleep in our arms? No parent should ever, ever, have to do this. We're hurting right now, hearts, souls and bodies. Our hearts break a little more with each passing day.