Thursday, September 8, 2011

Really bad day

I had post planned. Telling you all the things that have been happening the last two days.

I knew what pictures I was going to post.

Mason in the hyperbaric oxygen chamber next to the picture of Michael Jackson in the chamber.

We went for the treatment.

Mason was his happy sweet self.

they started the treatment

and he started screaming

and didn't stop for the next 90 minuets.

They can't stop the treatments really. Like a diver coming up too fast it can kill you, if your wondering why I didn't stop it.

I got them to give him morphine about 20 minuets into the treatment but it didn't help.

Mason writhed in agony.

I sat next to his bedside sobbing praying for it to stop but he just kept screaming.

They say that the treatments don't cause pain. In fact the nurse had been there since 1998 and had never had a patient experience pain before. They are guessing maybe his wound was causing the pain but they don't really know. The second the pressure started going down Mason was fine.

We have the next treatment tomorrow morning at 6. They are going to sedate him and give him pain meds every 10 minuets.

I not supposed to be able to go with him but I told them I WILL be at the bedside for every treatment from now on or I will not consent to anymore treatments.

I also told them they have half an hour. If he is in pain I will stop it. Of course with as bad as his wound is he really needs them.

This poor kid can't get a break.

I feel like I watched someone torture my kid for a hour and a half and didn't stop it.

I feel sick to my stomach. I keep having flashbacks. Seeing him arch almost in half screaming in pain.

I think this will go down as the worst thing I have ever experienced in my life.

and it didn't even happen to me.

Imagine how bad it must have been for him.

The thought will haunt me till the day I die.


Catherine said... Best Blogger Tips

unbearable to hear and imagine

Leslie said... Best Blogger Tips

Amy, wow. I'm so sorry that you guys are going through this. You are in my thoughts. Big, huge hugs.

Denise said... Best Blogger Tips

I am so sorry.

dxeechick said... Best Blogger Tips

So sorry, I hate this.

Valerie said... Best Blogger Tips

I hate reading this Amy. I hate knowing that sweet, innocent Mason was in so much pain. My heart aches for you my friend and I can only continue praying for all of you. XOXO.

Karen Rock said... Best Blogger Tips

so sorry Amy. Sometimes being a Mama Grizzley hurts as much as it helps. I wish they could give you both verced to wipe
it from your memories. Hug galore for you and kisses for Mason!

Erin Wood said... Best Blogger Tips

Been thinking of you... so sorry you had such a hard day yesterday. Praying that better ones will come soon! xxx

Pudgy Pencils said... Best Blogger Tips

Amy, a couple things to maybe ask about (if you haven't already) - besides the possibility of ear pain, a relative contraindication to HBOT is "History of thoracic (chest) surgery – This is rarely a problem and usually not considered a contraindication. However, there is concern that air may be trapped in lesions that were created by surgical scarring. These conditions need to be evaluated prior to considering HBO therapy." It could cause chest pain in similar way as ear pain from the pressure on the air in his chest, if there is some.

Another thought - we were told our baby Mason may also have CHARGE syndrome (not the usual gene just the association of issues) and our older son has the same deletion of genes - one of his problems is severe sensitivity to pressure of any kind. Even air pressure, in an airplane his elbow/arm went numb/hurt and he screamed for good portion of flight til we began to descend. We don't know the nature of our son's problem exactly but the closest thing we can find is called "hereditary neuropathy with liability to pressure palsy." you can google it - basically it is nerve pain/numbness with pressure. he is also really sensitive to the side effects of medication (seems unable to handle "oxidative stress" very well, which is fundamental to HBOT--and oxidative stress can be therapeutic with HBOT, but it can also cause pain, I just don't know if it is immediate pain, or later). But so little is known of these conditions that there isn't much to go on as far as effects of different types of pressure/stress, etc. We are praying for you all, what an ordeal...for that little boy to be home where he belongs very soon, and MUCH MUCH better!! The other Mason's mommy (

Molly said... Best Blogger Tips

So, so sorry Amy. I hope the sedation and pain meds make the next treatment tolerable for him and you.

Justin and Victoria Nelson said... Best Blogger Tips

my heart is hurting with yours. i am so, so sorry. this brings tears to my eyes. i am praying for you guys - you all are very much on my mind and heart.