I sit here with Merlin’s Magick Healing Harmony CD playing and the Dahli Lama’s chant earlier on trying to get Andrew to a more peaceful place. I have to keep talking him into a hypnotic state every few hours. The meds help me do it. Martin doesn’t need the meds. It smells good in here. It smells like a healing room again.
Andrew is still having fevers off and on. The pain in his back got to him tonight and he was crying. Yes, crying! It broke my heart. I couldn’t make it better. He is still bringing up blood in his sputum. It’s not all of the time thank goodness but it’s still there. It’s a dark red. Dunno what it means or what they are going to do about it. They plan on doin a cat scan on him today of his sinuses and chest. He’s been through so much! He deserves to feel well again.

He had his x-ray Wed a.m. and it looks like he has a touch of pneumonia now! Where the hell did that come from?? The last room was getting quite warm and you know how things like to grow in a warm, humid atmosphere! Then add the heavy energy of the room mate and there you have it! A recipe for disaster for someone who is sensitive to energy.

So we don’t know if that is where the upper back pain is from, his lungs or not. Martin did some hypnotherapy with him and got him settled down and peaceful for a few hours. Then Martin went to bed. SO when Andrew was awake again I couldn’t work the magick that Martin can, we opted for the meds. He didn’t want to because he was afraid his breathing would be too shallow to help clear his lungs. But he needs to rest and his breathing has been pretty deep while sleeping.

They had to give him lasiks to help him pee. He hadn’t peed in 11 hours!! Not good. ANd when he did it was only 500cc Even since the lasiks he’s only gone once and nothing to break any records 550cc. No “In YOur Face SUcka” to Martin.

I am getting emotionally drained from this. It’s wearing me down. We had such great days but now it’s been 4 rough days in a row. We’ve been here a total of 13 weeks! How much is a person suppose to take??? PLUS now we have the added issue of finances for NOV. We have none! Nothing, Zippo, Zero! Apparently there’s agencies but even when you fill out paper work they still want you to call them. Who the hell has the time with everything else you have to deal with in here?? By the time I can, their offices are closed. Really trying to stay down stream in my thoughts here but I feel like I’m getting hit from all angles!!!
Martin has applied for a web developer job that’s from home. You’d think that would come thru since he’s so good at it and they supposedly desperately need people. WTF?? People keep telling us to take care of ourselves. HOW?? We can’t leave Andrew. We’re by ourselves most of the time. I don’t have the funds now to get my hair done or a pedicure. SO please tell me how we’re suppose to take care of ourselves?? We try and get at least 6 hours sleep. That’s about all we can do right now to take care of ourselves.

They should have a Wish Foundation for the parents! Like we don’t need a little TLC after going through all this!! Like the parents couldn’t stand a vacation away after 5 months in a hospital?? A nice pampering get away? Feed the soul? Hmmmm maybe that’s what I’m suppose to start, an Oasis get away for parents who have been thru a major health trauma with a child. A place where the focus is on them! A spa retreat to decompress from months of living in constant crisis. I know that’s what I need! A place with yoga and meditation and massages and facials. A place to relax, have fun & feed your soul again! Well, maybe if we ever get outta here we will.

I think I will save the rest of my frustration, sadness and helplessness for a more private place, my own journal. I think I’ve shared enough publicly.

There’s nothing more traumatic than spending months on end in a hospital as you watch your child fight for his life! I know I know! You’re suppose to allow well being. But I’m here to tell ya, it feels more like a battle as you watch a disease try and eat away at your child’s health!
There’s a lot of camps for kids but nothing for the parents. And let me tell ya, WE NEED IT!!

The transplant people are starting to come in now and there’s all kind of info and forms to fill out for that. God this sucks!! It sucks big time! There’s just too much to deal with!


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