Back again

So it’s Sunday and it’s been a while again since our last blog write up. So what’s happened since the last lot …. Ummmmmm, not much !! Which has been awesome, we have had some time at home …. Caitie has been in a bit of pain but managing it… She has only had one Ed trip and the glucose worked … That was 2 weeks ago … Almost to the day … So at the moment, we are in the ED for the 29th time this year … The managed to get a canular in … She had the anti nausea, the 50% glucose push and the pain relief … And BAM!!! Take a look >>>>>

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They’re not sure if it’s an allergy or a tissued vein …. But it seems every visit there’s something that seems to hinder treatment one way or the other ….

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And this is it now

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Sooooo, I guess I’ll let you know what happens :-/

By caitiesporphyria

Hi again

Hi again everyone… Just a quick one to let you know that Caitie was taken back to hospital today … BUT …. She had the glucose and some pain relief and came home with me!! It was a short and sweet visit thank goodness… She is very tired and still a little sore but feeling “okay”!
And I am exhausted !!! Although I don’t really know why because all I did really was just sit there …. Anyways, that’s the way it goes I guess.
We also had a little bit of a bummer evening … Caities god brother had to be rushed to hospital also … He is a sick little man but so dam gorgeous … And so is his mummy! Anyhow, he has been very Ill for a very long time and tonight the little man couldn’t do it any longer … So he was called an ambulance, who in turn then requested the air ambulance … His mum is so dam strong!! I would have been a mess, but my beautiful bestest friend in the whole wide world held it together … She is my rock in so many ways …. And I love her with heart … We’ve been best friends for a lot of years and been through one hell of a lot …. But we’ve come out the other end still loving each other …
Anyway, seeing our man taken away was horrible … And seeing I’m so sick is even worse … But I have faith … He is going to pull through this and fight his way to the top once again …. I have faith!!! But a few prayers wouldn’t go astray …. Please ??

By caitiesporphyria

It’s been a long long time

Hi everyone,
Well it’s been a long time since I have been on and written anything…
To start with, Caitie is at home, and as been home and out of hospital for 6 and a half weeks … It’s been awesome to have her home, and although she is in quite a lot of pain, we have been managing it here … And so far so good … BUT the time is coming where she is going to end up back in for treatment… Anyways, I guess we will cross that bridge when we come to it…
Soooo, I need to fill you all in on what’s been happening … There’s been heaps so I hope you’re all ready for a bit of a read 🙂 I can’t remember dates so I’ll just do the storyline… And I promise, I will get on here more often to keep you all up to date… I might even be able to get Caitie on to do some blogs as well 🙂
Okay, here goes… Caitie has been in and out of hospital a fair bit… But like I said, its been 6 weeks… Her last visit in was an absolute nightmare … The emergency department was fantastic, as they always are, but the dr that she had on the ward was nothing less than a pig!!

Caities vein blew out, as it usually does, and instead of persisting and trying to get a new one, they quit! Yep, they just quit … So she was left with no glucose, no anti nausea and no pain relief … The dr decided that she had ” had her fill of glucose” and refused to put any more up for her … She was in agony , constantly crying and feeling extremely sick … Anyway, his attitude and total lack of a bedside manner has pretty much kept her at home … She has told me that she is so scared to go back to that hospital because of the way she was treated, she would rather stay at home and be where she is loved and cared for … I kinda don’t blame her, they had me in tears a few times too, … It got to the point where I actually tried to put in an official complaint about the dr. I contacted the liaison officer and she had me in tears … She was totally for the dr and hospital and all but called me a liar … Definitely not someone I want to talk to again…. Ever!!

We were informed that in the past 6 months, Caitie has been in hospital a total of 26 times … 93 days all up …. 3 months of her life has been taken by hospital … A great life for a 17 yr old ey!!!

Anyways, back to Caitie… She has had a lot of head aches and memory lapses … Very frustrating for her, and us to I suppose, but we get through it .. We had an appointment with her prof the other day … I had a few questions for him, and he filled me in … The headaches are part of porphyria …and Caitie is also starting to have petimal seizures … Not sure if that’s the spelling or not … But apparently they are like a mini epileptic fit … She stares off into space and her hands and fingers twitch quite eratically … They only last for a couple of seconds and she has absolutely no recollection of her having them … I didn’t know what was happening to her, and I have to admit, I thought she was just being ignorant … She’s only had a few … Maybe 7 or so that I’ve seen …still, it was a bit of a shock when the prof explained what he thought it was … And if that wasn’t bad enough, he told us that they would probably get worse :-/

So… What else has happened…. Ahhhhh yes, we have had a proper diagnosis now … Caitie has hereditary COPROPORPHYRIA … Pretty much the same as AIP … Just as rare, just as painful, a little more complicated and still no cure!!

Intravenous hemin (as heme arginate or hematin) is the recommended therapy for acute attacks.Acute attacks can be severe enough to cause death if not treated quickly and correctly. Hospitalization is typically required for administration of hemin, and appropriate drug selection is key to avoid exacerbating symptoms with drugs that interact poorly with porphyrias. Proper drug selection is most difficult when it comes to treatment of the seizures that can accompany HCP, as most anti-seizure medications can make the symptoms worse.

Hmmm what else… Tamsyn ( her puppy ) is growing up very quickly … And totally spoilt rotten …
She sleeps with Caitie and frets when she can’t see her … Haha

I’m going to put the YouTube video back up so you can have a look if you haven’t already … It gives a little more insight on the life of Caitie …. So it would be great if you could watch it and share it around….

http://m.youtube.com/#/watch?v=l6ek2A6VCmU

I think that’s it for now … I’m sure I’ll think of other stuff to write soon enough and I reckon what I’ve written may have bored you all to tears haha

Talk soon xx

By caitiesporphyria

Missed a few, I’m sorry :-(

Hi everyone, well it’s been a few days since I came on here to let you all know what was happening with Caitie … But here I am.

First of all, I would like to wish all the mums out there a very happy mothers day for yesterday … I spent half my day at home, and the other half at the hospital with Caitie … But all in all, after breakfast in bed, I had an okay day. Obviously it would have been better if I had all my kids with me at home, but ya gotta be happy with what ya get.

Anyways, as you’re all probably aware, Caitie is still in hospital .. It’s been 8 days now … So here’s a run down.

She went into hospital last Sunday night / early Monday morning. After a few hours in emergency, she was admitted and sent upstairs. She had copious amounts of pain relief and an enormous amount of dextrose, but it still didn’t do anything. On Wednesday, the drs decided that ANOTHER PIK line would be going in, and the hemetin would start again. Well, the PIk didn’t go in until Thursday afternoon, and the hemetin didn’t start until Friday, and she was only given 2 days treatment. Radiology had a little trouble getting the PiK in, as her veins are pretty shot, 1 of the veins collapsed whilst they were trying, but they managed to get it into a larger one.
Before they can put a PiK in, they need to check the coagulants in the blood, meaning they need to check for clotting etc, the drs tried and tried to get blood .. The vial they use is only like a 5ml tube, and after 11 attempts, and only a third of the vial, they decided to go straight into the artery. The dr came in, told us what he was going to do, we all freaked a little, he dug extremely deep but got the blood required. Caities arm was a little sore, but nothing to major. With the coags done, we were off to radiology and the PIk was inserted.
We have been having an ongoing argument with the drs about the amount of times they try and get blood, or put a canular in, how distressing it is for Caitie to be “stabbed” so many times, and the fact that she has had 4 PIkS in 3 weeks, 1 of which didn’t work .. We have been asking them to leave the line in so Caitie doesn’t have to go through it, but they keep refusing. Anyway, the dr came in on Friday morning, after a meeting with the medical director, told us that the PIk couldn’t stay in … BUT, they were considering putting in a portacath ( however its spelt). Apparently, it’s a little safer than the line, but it’s a bit more invasive and requires a sedation to be put in.

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That’s what it looks like .. Well I think that’s it, I may be totally wrong. If I am, I will put up a correct picture when I find one.

Anyway, it needs to be put in by surgeons, and as far as we are aware, it will be going in, we’re just not sure when.

So, Caitie has had a really rough time with this hospital visit .. She’s been touched with latex gloves, been in absolute agony, had to wait for treatment, even the basic treatment hasn’t been done when it’s supposed to have been, been pricked so many times I’ve lost count, been feeling so sick and not sleeping very well at all. Her pain level has been that high that she is now on a PCA with morphine running straight through and is having subcutaneous morphine through a butterfly ..

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This is inserted under the skin in caities stomach and the morphine is pushed through it.

It takes about 20 minutes or so to disperse and is supposed to last a little longer that IV morphine, but it hasn’t seemed to be working to well at all, well not at the moment anyway.

So today is Monday, the drs are trying to work out how to help Caitie, and at this point in time, they haven’t come up with much at all .. Although, I will say, her dr isn’t going to give up so that’s a plus.

I’ll be back soon with another update .. Have a good one everyone 🙂

By caitiesporphyria

Still going :-(

So it’s now Wednesday and Caitie’s still in hospital… And just to top it off, so is her sister Ashlee. Ashlee has a tumor on her pancreas that is being removed on Friday, but she was admitted to the same hospital as Caitie last night… With pancreatitis … Making my job just a little harder 😦

This is Caities third day in and , yesterday Caitie saw the drs, and we were told she would be having a morphine infusion put through, and another PIk line put in … As you would have read last week, the radiology department weren’t happy about putting another in because it had only been 2 weeks since the last one and they told us that if she required about her one in less than a month, they would refuse to do it … So guess what, it’s been 1 WEEK since the last one, and at this point we have no idea what’s going to happen … However, Caitie will be having the hemetin(!normasang)’again, that’s supposed to be starting today but as that needs to go through the PIk , who knows when that’s actually going to eventuate … Caitie is still in so much pain, she has been ending most of her days in tears, they’re giving her sub cutaneous morphine, meaning, she has a butterfly under her skin in her stomach and they inject it in to that, it takes about 20 minutes or so to take effect … Leaving the pain to escalate for that time, by which time, Caitie is in double the amount she started off in … It’s just a big circle…

So in plain English, Caities pain isn’t getting any better, she’s becoming depressed, she wants to give up, she’s sick of living with this horrible illness, she wants to go to sleep and never wake up, she doesn’t understand why it’s happening to her and there not a dam thing I can do about it …

I lashed out yesterday and got a tatts ticket, thought I’d try my luck at winning the big 70 million … I didn’t win, which isn’t surprising, but I had it all worked out on the off chance I did … My girls wouldn’t be going through any of this shit any more if I’d have won, that was first and foremost on my winners list … And of course, because I didn’t win, I became sad , and of course, all the questions started again … Why them, why me, they’re babies, why are they being punished and why the hell can’t I do more to help them … That, I’m afraid, is the question that haunts me every waking moment of my life … And I can’t even help them financially because I’m broke … And I can’t even do something as easy as winning tatts …. GGGrRr!!!!

Anyway,

I left the hospital last night quite late in comparison to when I usually do, and Caitie had the canular in her wrist … She sent me a message at 1.30 this morning , saying that her vein had blown out and this is what happened…

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Caitie had told them that it probably wouldn’t last , and we have asked over and over again for them to leave the PIk in but they won’t, and they can’t give us any other reason other than infection …but if it’s covered, and it’s checked and flushed 2 or 3 times a week, what’s the risk …
We have a meeting with the “big boss man” later today … Well that’s of course if he shows up!!

Anyway, I’ll come on and keep you all updated with what’s happening ….

By caitiesporphyria

3.07 AM

Well we’re back at the hospital … Caitie held out and held out til she couldn’t stand it anymore …
She had pain earlier on in the night but we managed to get it somewhat under control for a little while… Now she’s lying on a trolley in the ED waiting to get the glucose and some pain relief …

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Now she’s gonna kill me when she sees this on here , and I know you’re all probably thinking to yourselves how could she be taking photos at a time like this… Well, Caitie and I spoke about it when we first started doing this blog, and because this is to show you all what’s it all about, we decided that no matter how bad it got, I had to take pictures… Obviously, if it was really bad, I wouldn’t do it, and usually I’ll only take them when Caitie says its okay to, but tonight, I snuck it in … Although, I think she knew cos look at the thumbs down… 😦

Anyways, I guess I’ll keep you all informed on what’s happening and what they do… Hopefully it will be as simple as 50% dextrose push, ondanzatron and some pain relief and well be home by morning… Fingers crossed ey!!!

3.41am and Ashlee, caities sister is having a snooze, literally, sitting up hahaha

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Caitie getting another dose of pain relief after already having a 50% infusion of dextrose

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4.23am, after almost 1050 ml of dextrose, 4 mg ondanzatron and 15ml morphine, she’s still in pain but she sleeps 🙂

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6.26am and the pain still isn’t really settling much at all. They’ve just put through another 100 ml of 50% dextrose and given her more morphine and anti nausea , and she’s back to sleep now …
As i sit here and watch her sleep ( creepy I know ) I can’t help but wonder when her life is going to be normal, or if it even will be. We had a conversation the other day about kind of the same thing. Caitie asked me why this is happening to her , she doesn’t drink, she doesn’t smoke and she doesn’t do any form of drug other than when she’s in hospital and yet, this horrible stuff is happening … And her life is far from normal. I wish I could answer her questions but I can’t … It just seems so unfair.
AND I wonder if there is somewhere/someone out there that can make her life just a little more bearable…I wonder if glucose and hematin is the only thing that can be done to relieve this agonizing pain that she goes through with each attack … Or If there’s some miracle drug thats out there that will stop this pain and allow her to be a normal 17 year old … Or if this is the only life my daughter is going to have ..

10.15AM we are still here and still in emergency …we’ve seen the dr and Caitie is going to be admitted again. The dr we saw was lovely, he actually spoke to us not at us like a lot of them do … He asked questions , we asked questions and got answers … He’s now off to speak to the professor and Caitie will be going up stairs …. 😦

2.50pm so we are up on the ward now … Caities still in loads of pain … And we are waiting for the appointment for the pik line to go in and the hemetin to start … Hopefully it will all be happening soon …. Cross ya fingers xx

By caitiesporphyria

Overnight

It’s Saturday, and after caities bad day yesterday, we are still at home. I’m not really sure if that a good thing or not because seeing her in so much pain breaks me … But at the moment the pain meds we have here seem to be taking the edge off it so I figure, here would have to be more comfortable for her … And tamsyns here so that has to be a plus.

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This is Tamsyn … She is Caities puppy that is going to grow up and be her companion. We are going to get her trained so if Caitie isn’t well, or has an attack and no ones around, she will get help for her. Tamsyn will be able to sense when something’s not right with Caitie and alert either myself, or someone near by ..and protect Caitie if need be. It’s a lot of training, and quite expensive from what I’ve been told, but when its your life or the life of someone you love, I believe it’s worth every penny.

No ones life is meant to be like this, cancers, diseases, illnesses of all types, no one should have to endure that kind of pain or sickness… And to watch a loved one, a child, a parent or even a friend go through it, my god!!!
Caitie, at the age of 16 (she’s now 17) but at 16, when we found out about porphyria, made a bucket list. She came and talked to me about it and asked me to help her do as much as she can before she a/ becomes to filled with pain that her body won’t allow her to do anything .. And b/ she dies .. I sat, looked at her, feeling my eyes fill with tears and said to her that she was still a baby, and she shouldn’t be doing or talking like this … Her response to me was “mum, I don’t want to die with this horrible thing and not have anyone know anything about it .. There are other people, kids, girls out there that have been and are going through what I’ve been through and what I’m going through now and what’s to say anyone believes them, I have to raise awareness mum, we have to raise awareness and make it so others don’t have to be on their own, that’s my first wish on my list, thats the most important one, all the other stuff is gonna cost you, haha” …. I have to tell you, it broke my heart!! At some stage, really soon, I will sit and write about what Caitie and myself went through before she was diagnosed … It still shocks and angers me that the people we put our trust in, could do what they did to a child … And I know there are people out there that have copped it from these medical experts, so I know you’ll understand where I’m coming from, for those of you that haven’t seen that side of these people, you’re in for a shock….
And please remember, everything that is written in this blog is the absolute truth, it’s how we’re are feeling, it’s about what’s happened to us throughout this time and it’s all about raising awareness for those of you that know as much about porphyria as what we did … It’s not about putting others down, it’s not about slandering drs and nurses and health professionals, it’s just about what Caitie and myself and my family went through …
Anyway, I hope your all enjoying reading this so far … I can guarantee there’s a heap more to come.. Xx

By caitiesporphyria

It’s Friday :-)

So Caitie has been home since Wednesday lunchtime … She’s was still in a little pain when she got home but nothing to major, and it’s been 2 days, and guess what, loads of pain relief yesterday and I actually thought we were going to end up back at the hospital, but nope!!! Not yet !!! Although, I’m kinda thinking it’s not going to be to much longer til we are back there 😦

It’s heartbreaking to watch her go through through all this pain… I can only imagine what she is feeling … It’s tears me apart hearing her ask me to make it stop, then hearing her tell me that she can’t stand the pain anymore, and that she just wants to give up.. Hearing her beg me to let her sleep forever … Hearing her sobbing because of the pain, hearing her vomit and watching her become exhausted by the smallest movements … I never imagined in a million years that I would have a child that would have something so horrible wrong with them …
I thank god everyday for my beautiful children, but I cannot and I don’t think I will ever understand why my beautiful girl is going through this … And every single day I wish it were me that was going through this, wishing every day that I could take the pain away so Caitie can live a normal life and praying harder that just maybe, one day very soon, someone will find a cure.

Anyway, I’ll let you all know what’s happening xx

By caitiesporphyria

She’s home again :-)

Well howdy, this hospital visit was 11 days … And in that 11 days, Caitie was poked, prodded and pricked so many times I’ve lost count. I will put up some pictures soon and you’ll see some of what was happening… I’ve been a little lazy as far as writing in the blog, but I was exhausted so I apologize to all… I’m going to try and fit as much as I can remember in this blog, so I hope I don’t bore you all to tears …

This one was put in after around 8 attempts and as you’ll see, didn’t really last very long.

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It was in for 2 days I think, before it tissued and became very painful

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Caitie had drs and nurses all trying to get a new canular in, again, I’m sorry about the spelling…

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In the end, they finally got one in her foot…

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It was kinda painful in there but that settled after a little while… And the pain relief and glucose started again.

Now remember i told you all about her visit to the radiology department to get another pik line in last Friday and they couldn’t get one in after an hour and a half, well Caitie was supposed to go back on Monday to have it put in….. It literally took ALL day Monday for them to get blood and find a vein so she didn’t end up going there, it was Tuesday by the time they did the pik line and started the hematin … So after a heap of pain, nausea and tears, the treatment started on Tuesday lunchtime..

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Caitie was feeling a little better after the first lot and decided she wanted an ice cream, so off we walked to the cafeteria. It was a nice slow walk, but we made it, got caities ice cream and started walking back to the lifts. We got half way and Caities breathing started to become very loud, and she was gasping for air. I tried to make her sit, but Caitie being stubborn, was adamant she was going to get back to her bed, so we got into the lift, up to the 3rd floor, started walking along the corridor and she gave me that look. It was a help me look, a little scary really, but I got help for her and we got her back to bed. We got her breathing slowed down, and gave her pain relief and she settled. The dr came up and checked her out, and she was fine, just over did it .. To much to soon was what we were told. Anyway, later in the afternoon, the drs came around again and Caitie asked them to turn the PCA down, and told them she wanted to come home after her treatment on Wednesday… And guess what, she came home Wednesday.

We went and picked up her baby tamsyn

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Now we are just hoping she hasn’t come home to soon again..

By caitiesporphyria

Allergies

When Caitie first got sick, with the gall bladder symptoms, she was able to have tramadol and codeine and things such as panadeine forte , nurofen plus and antibiotics but as the illness got worse, we found that she can’t have them anymore because they either make her sick or react with her skin so badly this is what happens

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This allergy has only come up in the last 2 weeks… You may ask how we know this… Caitie had the PIK line put in on 13/4/2012 … 3 weeks ago … Now they tried again Friday just gone to get another one in and after failing, they pulled it out and covered the area in tecaderm ( however its spelt) … Same as they did last time… And that is what happened… All different tapes, band aides, different creams and lotions, shampoos and conditioners, so many different things that once upon a time she could use, she can’t any more.
We’ve also been told that different things can set off an attack… Things like nail polish, acetone, paint fumes, petrol, gas and even fire smoke can do it… Everything in this modern society can pose a risk to Caitie… Like our dr once said, it’s almost like she’s allergic to the air … And if you think about it, it’s almost like that isn’t it… The worst part is, until it happens , we don’t know what’s good and what’s bad as far as the different smells go… It’s a wait and see thing.. And for Caitie,mthat makes life so much harder…

By caitiesporphyria