Saturday, January 14, 2012

Gut Hell, Anaphylaxis and How To Help My Girl...

That'll teach me to post on Facebook that I made it to two weeks anaphylactic-FREE. Then no less than 2 hours later, I ate a Ferrero Rocher chocolate and immediately started having a reaction. Started off with severe flushing, including the ears, then hypotension and then my throat started closing in and I started gagging. Mum and Antony called it right away. Epi worked her magic and then all was well.

This on the heels of spending most of the day on Thursday in hospital as well. I had had 5 days of severe, and I mean SEVERE, diarrhoea (including two rather undignified accidents in my clothes) and I can't remember ever sleeping that much. Then I woke up thursday morning to rather nasty puking too, along with what I thought felt like a dehydration headache.  

I got through the morning, my kids came home for lunch and I was doubled over in gut pain, wrenching and on the loo (with bowl in hand...hate it when you're dealing with both ends) and had the shakes. HOW I made them lunch is beyond me, but Mothers do all sorts of things through all kinds of situations, so...I did.  Anyway, after the girls went back to school, I called my husband at work and said I needed a ride to Emerg. He came and got me.

I expected to spend ages sitting in the waiting room. But when I got to triage, I puked in front of the nurse (a really nice man), explained I had Adrenal Failure and am supposed to come in after 3 days of this sort of madness but I'm on day 5, and I have Mastocytosis and it's ok if he's never heard of it. He asked me a bunch of questions and I realized then WHY I should've had someone with me...I was having trouble answering basic questions. I apologized.  He said they were sending me to lab for immediate workup but first to go get registered at the next desk.

I was getting registered at the next desk, having more trouble answering basic questions, but still trying to be helpful. The nurse said to me at one point how pleasant I was for someone who lives with so much serious illness and how refreshing that was. Then she asked me if I'd like a wet cloth to wipe my face (because I was still puking while all this registration was going on, and I kept apologizing for it...) So she gave me a nice damp facecloth. Then she took me to lab personally and got me settled.

I seriously thought, with ALL those people in the waiting room that I would sign in and have to go have a seat out there and wait forever. But no. I waited in the lab for a while and then a nurse came and got me and said the lab could come to my room to take my labs and they were going to get me comfortable. They kept coming in to change my puke bowl for me. They commiserated with my gut hell.

It was pretty obvious that I had a stomach bleed going on.  I've had one before. Throwing up brown, coffee grounds/curdled looking coke and gut searing pain in one area...tell tale signs.

My labs came back and the Doctor came in.  I had just assumed my Masto. was acting up (even though I don't usually get diarrhoea THAT bad for THAT long....) My labs showed I was badly dehydrated and fighting an infection, so she thought I had one of the nasty tummy bugs running around Winnipeg right now. She saw my puke bowl and said "stomach bleed too, huh?" and examined my tummy. We talked about how I'd one before and what we'd used to treat it. They don't carry Pantaloc at Urgent Care Misericordia Hospital, where I went, because they don't have a Gastro. Doctor on staff, so she decided to bag me with ranitidine instead and maxeran for the vomitting. I haven't had maxeran before. Usually we use Stemetil but she said they haven't used that drug since the 90's. Weird...all the hospitals I've been to have used it. Anyway, we used the maxeran and it worked BUT I reacted to it. I hived and flushed with it...but nothing else.  I got two big bags of IV fluids, steroids (hadn't been able to keep my own in) and my headache totally subsided. I slept.  They let me go home later that night.

Two days later...I am no longer puking and I have a prescription for Pantaloc to get the stomach bleed under control and my whole gut is feeling less acidic and nasty generally. It still hurts/burns to drink/eat but improving. Because of the anaphylaxis, I am now sequestered and on prednisone for 5 days.  I am taking benadryl every 3-4 hours because I'm still flaring if I don't. This will probably go on for a few days. At least I'm not puking...mind you I'm not really eating (it hurts!)

ALL of this on the heels of my 10 year old having a major meltdown, after about 6 weeks of explosive behaviour, night terrors, not wanting to sleep in her bed, stalling at bedtime, irritable after school, being nasty to her sister and then it started with her speaking badly to my husband and me too. We kept speaking to her about it but it just kept going on. Then on Tuesday, it all came to head after she exploded at her sister AGAIN, and when I stepped in she blew up at me (over a painting project we were supposed to be having fun with at home). So I asked her what her problem was and after a bit more pushing, she blurted out that she is terrified of waking up and me being gone or dead; coming home from school and me being gone or dead; of one day the epi pen not working and me dying; that she's angry that I'm sick and that anaphylaxis could kill me and she's sooooooooo scared I'm going to die from it...and she broke down in a heap of wailing little girl and I held her tight, and cried with her and thought "dear God, HOW do I make this better!?!!?!?"

We had a long talk and hugs.  I'm not sure if I handled it properly or well, but I handled it the only way I could think to at the time.  I told her she had a right to be scared, angry and frustrated because what she lives with creates ALL of those feelings. I thanked her for sharing her feelings.  I told her that I am doing and will do everything in my power to be well, stay well and be around for a long time.  She interrupted me here and told me that she was angry with me because I DON'T look after myself properly. I take chances. I go places and eat things that can hurt me and I take risks. (Here I was thinking I needed to show my kids that I wasn't afraid to LIVE life...) So, with her sister present too, I asked them both if they both felt the same way about the taking risk thing...and they do. They are both angry with me for not being more careful. So I promised them I will be more careful hereon in. We have agreed that there ARE things that I just don't yet that can hurt me and that we will be understanding of these things that are unknown yet.

I have been sleeping with my 10 year in her room, in her bed, with her the past few nights in order to give her a sense of security. She continues to wake up several times in the night screaming "Momma?!?!? Momma!??!? ARe you there??? MOM!?!?!?" and I gently pat her hair, tell her I am there, it's ok, and tell her she can rest and go back to sleep. And she leans in, snuggles, sniffs me and goes back to sleep.  I'm hoping that this kind of nurturing will help her get some good rest and will ease up with some time.

SO imagine Thursday afternoon, after telling me all of this...she goes back to school at lunch time. Comes home after school and I'm not here.  One of her greatest fears HAPPENING.  My husband said she was really upset.  She came home from school and I was at the hospital. She totally melted down. I was happy that she melted down though, instead of bottling it up. He said he just held her and told her that he'd seen me and they were giving me medicines and they were taking good care of me and I was going to be ok and home later.  When I got home from the hospital, she ran and hugged me for dear life. That night, she woke up, I'm not kidding, about 11 times. Serious night terrors. All about me dying. So at 4 am, when she was awake, I suggested maybe tomorrow she not go to school.

Yesterday, then, she had a 'personal' day off of school. We snuggled all day on the couch and watched movies. She kept saying to me, all day long, "Mom I love you."  I just kept telling her "I'm here. I love you too."  She is more relaxed today.  She only woke up 4 times last night.

Think I might have to pick up a book on 'attachment' parenting or something.  It's going to take some serious love to help this little girl grow up healthy.  I mean, I know we can't help this reality we're living with, but there's GOT to be something we can do to help her through it. If anyone has suggestions...I'm all ears.

1 comment:

Anaphylaxing said...

horrible. absolutely horrible, it sounds like you're doing a great job with your daughter. Poor girl.