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, 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.

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