Friday, 15 January 2010

Weekend Leave

I'm home from hospital now for the weekend, I'm so happy to be home with Matt and Connor and be able to eat!
Never been so happy to eat before.

I got a get well Teddy from Victoria while i was in too, i have never been so spoilt before while i have been in lol

Thank you Vic!!!!!!!!!!!

Some very said news to report on to, Jess who after waiting for over 4 years for new lungs got the called she needed at the last hour only for the wait to be to long for her. Jess passed away after fighting for nearly two weeks.
R.I.P Jessica xxx

Tuesday, 12 January 2010

Balloon Monkey

I want to say a big thank you to Gemma!!!!!!!!!!!!!!!

Gemma made me really happy today, she sent me a balloon in the post because I'm not feeling to well in hospital at the mo.
I have been trying to put a photo up of it but i cant work out how to do that yet from my new cam lol so it will have to wait till Matt can do it for me.

anyway that's all i want this post to be, a thank you :) xxxx

Sunday, 10 January 2010

Blog From Hospital So Far.......

Wednesday 6th Jan

After waiting days i get that long awaited bed on one of the wards at papworth. After we dropped Connor off at my Mum's house we go to Tesco to pick up some bits to keep me going in that cell for 2 long weeks. We make it there in around an hour, the roads were pretty easy considering there was so much snow and ice around. We get to the ward that has a bed for me and we have to wait in there day room for 2 hours till my room has been cleaned and has dryed, in that time Matt went home because he had to get back to pick Connor up and put him to bed so i waited on my own for a bit and then got my room.

It wasnt that bad a room, bit old looking but this part of the hospital is so thats nothing i wasnt exceiting but it did come with a shower and toilet so that was really nice, not having to pull my little drip trolly with me down the hall way to the toilet at 2 in the morning anymore. I was very happy. After being weighted and filled in all the info sheets they started on doing my port at 12.10am! anyway had to get it over with so i could start my i.v's once that was in and bloods taken they put me on two i.v's, i know one was Septrin and the other i think was Impering (will get spelling unless someone beats me to it) i was fine till 10 mins in to the Septrin i had a really bad pain at the bottom of my left hand side chest and then it when up to my neck and i couldnt move or breath right and found it hard to talk, i was in so much pain. i have never been so scared in my life i really did think i was seeing my last night! After what seemed like an hour (more like 5 min's) of me crying out in pain and im guessing waking everyone else up on the ward the on call Dr came and gave me some Morphine for the pain and that took around a min to work and god did that help, i felt a bit dippy but i didnt feel any pain so i was happy and talking alot of rubbish i think to the poor nurse that got left with me! After about half an hour they said i looked very tired and had a look at my Sats...well they were at 68% so god knows how i was wake or anything so they got some oxygen on me pretty fast and then my Sats went to around 95% so they were happy about that. Then they wanted some more blood but didnt want it from my port but a vain! Now unless you have CF im not sure you can understand how bad that is to us, anyway i wasnt really with it so i said "Yep sure you can!" so off he went with that needle in my arm, couldnt get any on the first try but then had a go on the side of my hand and all of a sudden i came over all hot and dizzy and i just knew what was going to happen next i just had time to say it then i just missed the little hat looking bucket thing the nurse had in her hand and was sick all down the side of my bed and floor not once, not twice but three times....nice. The Dr still had the neddle in my hand so that was good and even better with me moving the needle had hit the vain! Anyway after all that i got around 3 hours sleep that night.


Thursday 7th Jan

Got woken up around 9.45am feeling very worse for ware to a Dr wanting me to go down to have a CT Scan with dye to make sure i dont have any blood clots in my lungs that might be what is giving me the pain, only thing is they need me to have a small cannula in my arm to put the dye in as they cant use my port for it. Oh what fun this will be i think to my self. So this Dr has around four or five trys before she ask's another Dr to try, she also couldnt get it in after around four trys. At this point i started to cry, i had such a bad night and i dont even know why i started to cry i dont. The pain of the the needles wasnt that bad, nothing that i couldnt put up with, i have had worse i told my self i think i was just a bit overwelemed by everything that had been going on and i was all on my own, no Matt or Connor or even my Mum with me...alone and i didnt like it. Once i had got a grip of myself another Dr came to add his handy work to my swollen, black and blue arms, he did get it in after 3 trys.

I had the CT Scan but wasnt happy, the put me in a wheelchair with oxygen...i hated even bit of it, it was like i had given up. I mean come on i could have walked for sure, i was sure i could but they wouldnt have any of it, well i say Chantelle is not doing that for a very long time! MARK MY WORDS.

Scan was all clear no blood clots or anything but they did find some infecion at the botton of my left lung so that shows the pain wasnt in my head so i was really happy with that, easy....it would be easy to get over this blip and back on my feet. They started me on more i.v's but couldnt tell you what and i came up in like a red rash so they stopped that and want to try some more the next day.


Friday 8th Jan

Didnt do much today, some more bloods and an x-ray. not much to report. Made some cards in the evering, started diff i.v's again but after them i came out in more red blobs all over me, i look like i feel in a nettle bush then feel asleep in the sun for 10 hours, so they stopped them, didnt sleep well due to being hot and ichy.

Saturday 9th Jan

Today was a better day, still red but going down slowly. Had phyiso, was ok if you can say that about phyiso at all!
Dr came to see me and said there not going to put me on anything till all the red is gone because my body will most likely keep doing this, it needs a rest. He has started me on Aminophylinne (spelling people?) for my breathless-ness, said he didnt understand why i had not had this before and i think its working so far, fingers crossed it keeps up.
When Matt and Connor came to get me we went to see my friend Laura who is 37 weeks preg before we went to lunch as i havent seen her since she was around 24 weeks. she had got big! she is having a little girl which im so happy about, i cant wait to buy some girly stuff, we had a nice chat and cup of tea and Connor and Louis her little boy who is 5 months older then Connor played in the play room. it was really nice to see her again, i wont see her again till she has had the baby!!!

Went out to lunch when Matt and Connor come and picked me up so that was really nice to spend some time with them as i not seen them since wednesday so as you can tell i had missed them very much. first time Connor had been so long without seeing me since he was born and he was a bit shy and didnt come running up to me but i could understand that, i was hooked up to lots of drips and was in a strange room and looked very odd to him i bet but after a while he came round to me and gave me a kiss and hug and asked if we could go.
When i left him to come back to the hospital it was easier for me to just jump out the car then getting Matt and Connor out, it would just upset him. I got my bag together and got out the car and gave him a kiss and told him i will see him the next day and he asked me if he was getting out but i said no your going home with daddy but mummy has to stay to get better, he didnt like that and put his head in his hands and started to cry. i closed the door gave Matt a peck on the cheek and didnt look back but i could hear him....

I dont think i can do the NG tube feeds i really cant. i really gave it my all but cant. i have asked to be booked in for the peg again because its to much for me, i cant get my head around it. i cant get the tube past the gip bit. To start with i was really angry and upset with myself for being such a silly girl and for not just getting on with it, i texted my girls vic and gemma about it and they were very nice and told me not to worry about it and that i had given it a try and that was the main thing, some people can do it and some cant...i cant do it and because of that i started to think of how hard it must have been for Jo when she was trying NG feeds, she had such a hard time and thinking about her made me cry and it hit me how much i miss her now she isnt here, she was so brave and put up such a fight to get the weight on so she could get on that TX list. she was such a fighter and i am so proud to say i was her friend, i know she would have been very proud with me even giving it one try let along 5 or 6.

Please rasie a glass or a slice of cake to Miss Piggy....The best of us by far...miss you girl.
xxx

Monday, 4 January 2010

Compliance With Treatments

Gemma got me thinking about my CF today and how compliant i am with it.
The fact of the matter is that i have let it slip big time, i can sit here and say "oh but i cant fit it all in because i have Connor to look after" but its not that at all really, i should be doing it because it is my life and if i want to be here to see Connor grow up then I'm just going to have to suck it up and start doing them more.

What i do at the moment is insulin and night time times manly oh and Creon but i never miss Creon. i am missing out on my TOBI Neb's (do them once in a blue moon) and my DNAEs Neb's, morning pills and phyiso 2x a day.
and I'm hit and miss with my inhaler.

I'm so angry with my self and i cant keep going like this as i wont get on the TX list when i need to because you have to be fully compliant or they don't do the TX.

I have got a book and have done a page with all my meds in and then i can tick them or put a cross if i miss them.
I'm really going to try, i have done it before so i know i can if i put my mind to it.

Other news I'm waiting for a bed at papworth because I'm so tired and out of breath, i need a good rest and looking after.
I'm looking forward to some ME time too but will miss Connor more then words can say but its this or stay ill and just sit there and not playing with him or anything.
I don't want to be that kind of mum.

I'm going to join the gym soon too, well i think it will be opening up soon as it looks done. i cant wait, i hear its very good for your lungs and so is swimming so that will be what I'm doing over the next few months.

Connor is going to a new play school once I'm out of hospital as I'm fed up with the one that he is at now, there cr*p and its not good enough for him, were sending him to one that nearly twice the amount of money but its so much better for him and my dad and Matt's dad will be paying for it anyway so we don't have to worry about that at all and when he is 3 he will get it for free so its not for long.

Right I'm going and have a rest, I'll post next once I'm in hospital.

p.s happy new year everyone x

Tuesday, 22 December 2009

Dec 2009

Well my birthday is all over with now, don't you find its like that? I wait all year for my birthday and the days leading up to it seem to drag and then on the day it all fly's by so fast that it seems like any other day?

We went up to the Westfiled center in London for my birthday and it was really good, it was really big and we didn't get to walk around it all as we didn't have enough time.
We left home just before 9am and got there at about 11 ish and once we had eaten lunch it was like 1pm or something and we had to leave at about 4pm to make it home to put Connor to bed.
They had a few shops that you had to line up for outside like you was waiting to get in to a club or something and they were letting like 1 or 2 people in at a time! seemed very odd and over the top for me, we didn't go in any of them but i was a bit angry as i wanted to go to the Ugg store there to get some stuff for my new boots so they wouldn't get dirty but i wasn't lining up for 20 mins for it.
They also had a place called the village that had all the shops like Prada and D & G and in the middle they had a little cafe/bar thing that was selling champagne for £10 a glass! i wanted to have one but there wasn't any seats left so we didn't in the end.

What is with the weather! SNOW!!! and not just normal snow that we get that melts the next day or so, this snow has been here around 5 days so far! and it looks like we will have it for xmas day too. I should have put a bet on.
Connor loves it when Matt is making snow balls and then throwing them at the window, he laughs so much. he will be sad when it has all gone and we haven't even made a snow man yet...must do that at some point.

I think all my xmas shopping is done now, i have a few bits i still need to wrap (may do them later) and still need to send cards but i think that's not going to happen now. i did all my cards at the end of Nov but i don't know where i put them, some where for safe keeping and now cant find them so cant send them! if you got a card from me then your lucky this year!!!

I'm back on I.V's at the moment, been on them a week today, I'm not sure what my LF was last week as i didn't end up doing my blows but i did them yesterday and they were at 28%.........least to say I'm not happy! i don't know what has happened with my lungs these last 6 months, it feels like they have given up the fight in a way.
I might have to have 3 or 4 weeks of these ones to see if they help. i need to get my weight back on as well so i have asked about NG feeding for after xmas, i need to do something before it gets bad again and I'm really ill. my weight is at 47.9kg but was at 56kg in the summer! so lost lots. I'm also on some steroids too but there making my BM's high so I'm having to do more insulin and coz of that i think I'm losing more weight.
They said we'll see how my LF is over the next few weeks and if it wont go back up then we will have to talk things over and see what were going to do next.
I cant seem to win at the moment.

I cant remember if i said bout me booking up a Holiday at center parcs for Matt's birthday next year? its in march and will be our 1st Holiday together! never felt the need to go before and we always had other things we needed to buy or pay for before having a Holiday like car's/flat/bills/Connor. I cant wait, its going to be good.
Matt knows about it now and is really happy.

Anyway I'm not to sure what else to put....will post again after xmas and with some photos too.

Wednesday, 25 November 2009

Lost


I feel so lost

Jo was such a good friend and i loved her look on life, even tho she was having a hard time she still helped people that should could and talked about what she would do when she got her new lungs.

That never happened for Jo, sadly she passed away on 24th Nov at 5.30am.

Everyone is upset and will miss her so much, she was such a laugh talking about true blood and twilight and CAKE! it makes me smile to think of her talking about how much cake she had eaten.

She said on Sunday night that she wouldn't go to see the new twilight movie new moon and that she would wait for the DVD, Jo didn't get to see it and i know she would have loved it.


Tuesday, 10 November 2009

Dont Worry Im Still Here!!

Well i don't know what to say...i have really let things slide with this blog! i guess nothing has been going on that i think people would want to know lol


I have been in hospital and back on I.V's as my LF was back down and after a week was down even more! so i have 3 days left then I'm off them so I'm looking forward to see what they are after 2 weeks of i.v's.


My weight is down too, i have lost around 7kg in 3 months so isn't good, it went down to 49.2kg when i started I.V's but after 7 days it was at 50.1kg so that's good, i think that is coz i have been eating more now and also maybe coz i have been but on insulin 4 times a day :( but if it helps i'll do it. altho i might add i have missed a few with forgetting or being out and forgot to put the pen in my bag, saying that i have miss 2 lots of I.V's this time for being out and forgetting to take them with me so maybe my LF wont be back up!



X-mas is just about here! I love it around this time of year as everyone is in a good mood and i love buying people gifts :D so far i have most of what i have to get.


I need to buy Connor's main present still and few bits here and there for people as i have got everyone either one main present or 2 little ones to make the same money up as everyone else.


I cant wait to put my tree up, only another month left :D We always put our tree up on my birthday, 11th Dec and i still do this even tho i don't live at home now.


For my birthday we are (me, Matt, Connor and Matt's mum) are going to that new shopping center in London, i cant wait I'm going to get some long black UGG boots and some skinny jeans.


The day after we have to go out for Matt's nan and grandad's 50th annavery (SP) meal thing so that will be nice, i have seen a lovely dress in Jane Norman that i want to get but cant try it on yet as my port has the needle in for my I.V's so have to wait till next week. If i got it i would need some nice shoes to go with it too...i don't have any lol i live in trainers and don't really go out out to post places to it will be nice to get something nice for a change. This is the dress anyway....

Connor has started going to play-school for around a month or 2 now and loves it :) he goes two morning as week for 3 hours so i get some rest and get to clean up without him messing it up after me! the joys of a child, he is coming along with his words and can say around 30+ so he is getting better and is starting to put 2 together like he was in the bath a few days ago and when the water was draining away he was saying "bye-bye bubbles" it was so sweet he was waving to them and everything!

I'm going to see the new twilight movie when it comes out next week :D its called "new moon" I'm sure you all know what its about...if not read the book lol

I have to go sort Connor out now so this will have to be the end of this blog for now but i will re-start to update it alot more.