As you know the ivs finally finished on Tuesday!
Me and mum went up to the hospital for my appointment at 11:40am where Sam came and did my weight and lung function and finally... I'm at the weight I've been working towards for about 3 years! 50kg!!! It was back when I was at the Royal Brompton when I was about 14 that Dr.Rosenthal told me I had to get up to 50kg or I'd need a feeder. Well I've done okay without one this many years so I won't be needing one of those!
The lung function was 75% so only 1% more since last time. But it's good that it's staying up in the 70's!!
Dr Higton then came in and said she was really impressed and to keep the physio up and she'd see me in 4 weeks time.
Yay all good news!!
Saturday, October 26, 2013
Sunday, October 20, 2013
Home Sweet Home
Yay I'm home!! Well I have been for a week tomorrow but have only just got round to blogging so sorry for the late update!
Last Monday morning, I was woke up at 8am by Julie with my breakfast- a fry up! Although, after having fry ups every day for nearly a week I was not very excited to eat it.After my fry up I got up and did my medicine and DNase ready for when the physiotherapist comes round at about 11. I was expecting the doctors to be round at 9:30 so I played Mario Kart until then but there was no sign. My Tobramycin was due at 10am so I couldn't even go for a bath yet. Once that was finally finished at 10:30, I went for a bath and did my hair and put on a little bit of make up too make myself look less rough in the hope that I could go home.
The physio (I forgot her name as there is so many) came about 11:15 and we did a session on my BiPAP machine with percussions and managed to clear my chest.
The doctor then finally came around at 11:30 and had a chat with me. He told me he had spoke to Dr.Higton and ideally they would like me to stay until Wednesday as it was better medically, but it was up to me if I wanted to go home. I explained to him that I could do everything I was doing here at home and that the lung function had improved which is what they wanted to monitor over the weekend. He then said he didn't want it to go downhill again when I got home so I explained that no physiotherapists were even in at the weekend so I did the physio myself which obviously had an impact as my lung function was 74%! Of course with my explanations and knowing my own health he allowed me to go home.. wooooo!!
Judith came in at about 3 o'clock, once mum had arrived, and did an order for my home Ivs to be delivered However, they wouldn't be delivered until Tuesday morning so I would miss my evening dose of meds. On Tuesday we waited in for the IV order to arrive which was due to come between 10-12. At 12:10 there were still no sign of Ivs so mum gave the company a call and they said they didn't realise the driver was running late so would get back to us. At 12:30 they called back and said they were trying to track the order so would call us again when they knew. (Bare in mind by now I have also missed the morning dose of meds). We didn't hear from them again, so at 1:30 mum called up feeling quite cross and explained the order was over an hour and half late and that now I have missed another dose. They explained the order had been lost and it would now not be with us until 5:30 as it comes from Cheshire. Mum was really cross that one, we had to wait in and delay our plans and two, that I had missed yet another dose!
So we went to town and did a bit of shopping and then came back in time for the delivery. Once it came we attached an Iv and mum changed around the times of the meds so I would be able to go to work.
On Wednesday, I went into work and saw Sarah who did a risk assessment to check it would be okay to come to work and that I wasn't putting myself or the children at risk. Luckily, it was all fine and I was back to work on Thursday. It was a lovely welcome back, the staff all cheered and I had babies cuddling me and shouting my name. I received a lovely get well card signed individually by each baby and staff member.
I over did it a bit on Thursday though and got back into the routine too quick and managed to tire myself out! After work, I had a driving lesson and then a hair appointment and by the time all this was done I found myself in bed thinking what a busy day!
It feels good to be back on my toes and well again though. The Ivs finish on Tuesday and I've got a clinic appointment then to check I'm all okay. So will update you when I know! I've got to go back and do my apprenticeship work now.
Last Monday morning, I was woke up at 8am by Julie with my breakfast- a fry up! Although, after having fry ups every day for nearly a week I was not very excited to eat it.After my fry up I got up and did my medicine and DNase ready for when the physiotherapist comes round at about 11. I was expecting the doctors to be round at 9:30 so I played Mario Kart until then but there was no sign. My Tobramycin was due at 10am so I couldn't even go for a bath yet. Once that was finally finished at 10:30, I went for a bath and did my hair and put on a little bit of make up too make myself look less rough in the hope that I could go home.
The physio (I forgot her name as there is so many) came about 11:15 and we did a session on my BiPAP machine with percussions and managed to clear my chest.
The doctor then finally came around at 11:30 and had a chat with me. He told me he had spoke to Dr.Higton and ideally they would like me to stay until Wednesday as it was better medically, but it was up to me if I wanted to go home. I explained to him that I could do everything I was doing here at home and that the lung function had improved which is what they wanted to monitor over the weekend. He then said he didn't want it to go downhill again when I got home so I explained that no physiotherapists were even in at the weekend so I did the physio myself which obviously had an impact as my lung function was 74%! Of course with my explanations and knowing my own health he allowed me to go home.. wooooo!!
Judith came in at about 3 o'clock, once mum had arrived, and did an order for my home Ivs to be delivered However, they wouldn't be delivered until Tuesday morning so I would miss my evening dose of meds. On Tuesday we waited in for the IV order to arrive which was due to come between 10-12. At 12:10 there were still no sign of Ivs so mum gave the company a call and they said they didn't realise the driver was running late so would get back to us. At 12:30 they called back and said they were trying to track the order so would call us again when they knew. (Bare in mind by now I have also missed the morning dose of meds). We didn't hear from them again, so at 1:30 mum called up feeling quite cross and explained the order was over an hour and half late and that now I have missed another dose. They explained the order had been lost and it would now not be with us until 5:30 as it comes from Cheshire. Mum was really cross that one, we had to wait in and delay our plans and two, that I had missed yet another dose!
So we went to town and did a bit of shopping and then came back in time for the delivery. Once it came we attached an Iv and mum changed around the times of the meds so I would be able to go to work.
On Wednesday, I went into work and saw Sarah who did a risk assessment to check it would be okay to come to work and that I wasn't putting myself or the children at risk. Luckily, it was all fine and I was back to work on Thursday. It was a lovely welcome back, the staff all cheered and I had babies cuddling me and shouting my name. I received a lovely get well card signed individually by each baby and staff member.
I over did it a bit on Thursday though and got back into the routine too quick and managed to tire myself out! After work, I had a driving lesson and then a hair appointment and by the time all this was done I found myself in bed thinking what a busy day!
It feels good to be back on my toes and well again though. The Ivs finish on Tuesday and I've got a clinic appointment then to check I'm all okay. So will update you when I know! I've got to go back and do my apprenticeship work now.
Sunday, October 13, 2013
Good Lungs!
After a really boring physiotherapy filled week (well 6 days so far) my lung function has finally improved from 57% to 74% YAY! I am so happy! If this is just 6 days worth of physiotherapy and Ivs I'd like to know if my lung function is going to go up by any more for the next 8 days that I have left on Ivs.
After writing my last post 'Ivs' back on Wednesday I later found out the Teicoplanin was carrying on for the next two weeks but for once a day instead which would be at 6am. This meant the Tobramycin couldn't be done at 6am as I can't have 3 antibiotics all at the same time one after another. All a bit confusing but basically I am on 3 different Ivs, 5 times a day. Ceftazidime and Teicoplanin at 6am, Tobramycin at 10am, Ceftazidime at 2pm then Ceftazidime again at 10pm. Then on top of all these Ivs, I have physio sessions at 11am and 3pm when Jo or another physiotherapist comes round and does some percussion while I breathe on my BiPAP machine.
So when you think hospital is just a time to relax because you're ill, its not all that easy!
In between my 3pm and 10pm Iv and physio sessions I have been allowed home for a few hours each day which has got me through this week a little bit easier.
Max came and saw me on Wednesday as he only had one lesson at college and he turned up about 1:30pm with a Mcdonalds for me (except I didn't eat it where I felt crap), then once the Ivs and physio were done we came home for a few hours. Dad then dropped me back in the evening.
On Thursday Mum and Dad were both working and Max had a full day at college, so Abbi came and saw me for a few hours and we went out to Costa and Mcdonalds but I actually ate it this time! I only had a chicken mayo as dinner was waiting for me back at the hospital. Dad then arrived so Abbi left and he stayed with me until Eastenders had finished.
Friday was the doctor's round and I was hoping to be told I could go home... but no, they said I had to stay until Monday as they want to check my Lung Function has improved. Which clearly it has! So Dad came and collected me after my 2pm Ivs. A different physiotherapist was on who only comes round once a day so I had to do my other session myself which I did in the evening. Max then came over in the afternoon, once he had finished college, and me and him went out to the Beach Arms Carvery which was lovely! Mmmm Roast Turkey, my favourite. After that we came home and chilled for a few hours before going back to hospital for my 10pm Ivs and for a Mario Kart Wii race!
Saturday Dad couldn't pick me up until 4pm after his golf lesson so I watched a movie until he arrived. When I got home I had a nice hot bath- well I say nice, anyone with CF who has a port that is accessed knows how difficult it is to bath without dropping your tube in or getting the dressing wet! Mum came home about 6:30pm and we ordered a Nandos Takeaway. All these fastfoods and takeaways makes me sound really unhealthy, but again anyone with CF will know how boring hospital food gets! I've had fry-ups every morning and I tell you, I'm bored of them!
Then there's today, Sunday, Dad picked me up at 2pm as Sweetie did the Ivs early so I could be at home for longer. The physiotherapists don't come at weekends so I did my BiPAP machine before dad arrived. So since being at home I have completed my Apprenticeship work as I have missed lots due to not being at the nursery this week and can't attend my training tomorrow and now I'm updating this for you people who are kind enough to read it! I've got to have more bloods done tonight, for the 3rd time this week, to test my Tobramycin levels to make sure everything is okay which mum will do before we head back to the hospital tonight. I'm driving us back tonight in my car as I haven't been out in a while!
I hope to be told by Dr.Ho I can finally come home tomorrow and finish the next week of Ivs here. So fingers crossed he says yes as my lung function has improved! I'll update you all tomorrow
Naomi :)
After writing my last post 'Ivs' back on Wednesday I later found out the Teicoplanin was carrying on for the next two weeks but for once a day instead which would be at 6am. This meant the Tobramycin couldn't be done at 6am as I can't have 3 antibiotics all at the same time one after another. All a bit confusing but basically I am on 3 different Ivs, 5 times a day. Ceftazidime and Teicoplanin at 6am, Tobramycin at 10am, Ceftazidime at 2pm then Ceftazidime again at 10pm. Then on top of all these Ivs, I have physio sessions at 11am and 3pm when Jo or another physiotherapist comes round and does some percussion while I breathe on my BiPAP machine.
So when you think hospital is just a time to relax because you're ill, its not all that easy!
In between my 3pm and 10pm Iv and physio sessions I have been allowed home for a few hours each day which has got me through this week a little bit easier.
Max came and saw me on Wednesday as he only had one lesson at college and he turned up about 1:30pm with a Mcdonalds for me (except I didn't eat it where I felt crap), then once the Ivs and physio were done we came home for a few hours. Dad then dropped me back in the evening.
On Thursday Mum and Dad were both working and Max had a full day at college, so Abbi came and saw me for a few hours and we went out to Costa and Mcdonalds but I actually ate it this time! I only had a chicken mayo as dinner was waiting for me back at the hospital. Dad then arrived so Abbi left and he stayed with me until Eastenders had finished.
Friday was the doctor's round and I was hoping to be told I could go home... but no, they said I had to stay until Monday as they want to check my Lung Function has improved. Which clearly it has! So Dad came and collected me after my 2pm Ivs. A different physiotherapist was on who only comes round once a day so I had to do my other session myself which I did in the evening. Max then came over in the afternoon, once he had finished college, and me and him went out to the Beach Arms Carvery which was lovely! Mmmm Roast Turkey, my favourite. After that we came home and chilled for a few hours before going back to hospital for my 10pm Ivs and for a Mario Kart Wii race!
Saturday Dad couldn't pick me up until 4pm after his golf lesson so I watched a movie until he arrived. When I got home I had a nice hot bath- well I say nice, anyone with CF who has a port that is accessed knows how difficult it is to bath without dropping your tube in or getting the dressing wet! Mum came home about 6:30pm and we ordered a Nandos Takeaway. All these fastfoods and takeaways makes me sound really unhealthy, but again anyone with CF will know how boring hospital food gets! I've had fry-ups every morning and I tell you, I'm bored of them!
Then there's today, Sunday, Dad picked me up at 2pm as Sweetie did the Ivs early so I could be at home for longer. The physiotherapists don't come at weekends so I did my BiPAP machine before dad arrived. So since being at home I have completed my Apprenticeship work as I have missed lots due to not being at the nursery this week and can't attend my training tomorrow and now I'm updating this for you people who are kind enough to read it! I've got to have more bloods done tonight, for the 3rd time this week, to test my Tobramycin levels to make sure everything is okay which mum will do before we head back to the hospital tonight. I'm driving us back tonight in my car as I haven't been out in a while!
I hope to be told by Dr.Ho I can finally come home tomorrow and finish the next week of Ivs here. So fingers crossed he says yes as my lung function has improved! I'll update you all tomorrow
Naomi :)
Wednesday, October 09, 2013
IV's
Last night wasn't too bad, I was started on Teicoplanin and I didn't react.. Woohoo! Dad came to visit me once he had finished work and brought me a Domino's pizza with potato wedges and cookies. Then he stayed and watched Eastenders with me. That's basically what my whole day consisted of, watching telly and laying in bed. BORING!
I woke up at about 4am having the worst coughing fit ever :(. At least it shows the antibiotics are already kicking in though! Then at 6am Sue came in and started me on some Ceftazidime and gave me another dose of Teicoplanin.
I will be having Ceftazidime 3 times a day at 2pm, 10pm and 6am and have one more dose of Teicoplanin tonight at 8pm. Then tomorrow I will be started on Tobramycin which will be once a day at 6am before the Ceftazidime.
I've been up showered and dressed since about 10am and now I'm so bored! Luckily, Max is coming to visit me later though.
This blog post is pretty boring but was just a quick update of what IV's I'm on.
I woke up at about 4am having the worst coughing fit ever :(. At least it shows the antibiotics are already kicking in though! Then at 6am Sue came in and started me on some Ceftazidime and gave me another dose of Teicoplanin.
I will be having Ceftazidime 3 times a day at 2pm, 10pm and 6am and have one more dose of Teicoplanin tonight at 8pm. Then tomorrow I will be started on Tobramycin which will be once a day at 6am before the Ceftazidime.
I've been up showered and dressed since about 10am and now I'm so bored! Luckily, Max is coming to visit me later though.
This blog post is pretty boring but was just a quick update of what IV's I'm on.
Tuesday, October 08, 2013
Hospital Admission. Booo :(
Today I came up to the hospital for my regular check up. Me and mum left our house at 7:30am to be at my appointment for 8:30am. The traffic on the M3 was so bad we only just arrived in time at 25 past!
When we arrived the HCA (health care assistant) did my obs and my lung function. Unfortunately, my lung function was still down in the 50's at just 57% which is rubbish for me. I looked back over my results from when I first joined Frimley when I was 16 and they have only actually been in the 70's after a boost of Iv's I had!
Dr.Higton came and saw me after and asked how I'd been keeping and I explained that my cough has been a lot worse than usual and that I haven't been doing my physio like I should! She then showed me a graph of my lung functions and said it would be best to have some Iv's but in hospital so I also get my required daily physio! She said I have to stay here a minimum of a week to make sure I'm better to go home to finish the Ivs. Rubbish!
So me and mum went home and got some stuff for my stay and then we came back and Max came with us so he knows the way for when he visits me tomorrow.
Mum and Max dropped me off and then left at about 1:15pm as Max had to be back at college for his lessons. So I had lunch and then went for a nap. Then Judith came in to access my port and the physio then came in at 3pm and we did a session on my Positive Pressure machine.
Since then I have been on the phone to George for a while and am now updating this.
I'm not sure what Iv's I'm going to be on yet, a doctor has just been in to see me and said he will find out. I do know Dr.Higton wants to try me on teicoplanin again though as they were not sure if I actually reacted to it last time back in March or if it was because I was so ill. But i'll keep my blog updated anyway so anyone who wants to know can have a read.
:)
When we arrived the HCA (health care assistant) did my obs and my lung function. Unfortunately, my lung function was still down in the 50's at just 57% which is rubbish for me. I looked back over my results from when I first joined Frimley when I was 16 and they have only actually been in the 70's after a boost of Iv's I had!
Dr.Higton came and saw me after and asked how I'd been keeping and I explained that my cough has been a lot worse than usual and that I haven't been doing my physio like I should! She then showed me a graph of my lung functions and said it would be best to have some Iv's but in hospital so I also get my required daily physio! She said I have to stay here a minimum of a week to make sure I'm better to go home to finish the Ivs. Rubbish!
So me and mum went home and got some stuff for my stay and then we came back and Max came with us so he knows the way for when he visits me tomorrow.
Mum and Max dropped me off and then left at about 1:15pm as Max had to be back at college for his lessons. So I had lunch and then went for a nap. Then Judith came in to access my port and the physio then came in at 3pm and we did a session on my Positive Pressure machine.
Since then I have been on the phone to George for a while and am now updating this.
I'm not sure what Iv's I'm going to be on yet, a doctor has just been in to see me and said he will find out. I do know Dr.Higton wants to try me on teicoplanin again though as they were not sure if I actually reacted to it last time back in March or if it was because I was so ill. But i'll keep my blog updated anyway so anyone who wants to know can have a read.
:)
Monday, October 07, 2013
Max's 18th Birthday Weekend
Yesterday was Max's Birthday and he finally turned 18 so I spent the weekend with him.
On Saturday Jenny and Kelly came over at about 5pm and we ordered a Dominoes and got ready for Max's Party. Mum and Dad dropped us there for 8'clock and they stayed at Max's for a while to talk to his parents and because they wanted to see him open one of his presents that Dad had got him as it may have come in handy that night. It was a pair of blue sunglasses but the end of the arms on the glasses were bottle openers, everyone at the party loved them and were coming up to Max every time they needed a beer opening! Dad got them because he said Max drank a lot of alcohol in Turkey, so they'd come in handy for his holiday next year haha!
After mum and dad left I finally spoke to everyone who Max had invited and we partied to celebrate him turning 18 on Sunday. Well it was Sunday by the time the party had finished, so we sang Happy Birthday at 12am and Max opened the champagne.. I say opened, he did it 'F1 style' and shook the bottle everywhere! The last half an hour of the party was when everyone actually bothered to dance even though Max's dad had set up the lights and speakers which were blaring all night!
When the party was over, me, Max and his parents cleared up the bottles and plates until Jane told Max off for tidying up as it was his 18th! So Jane and Chris tidied in the morning instead.
In the morning when Max finally bothered to wake up (lazy!), he opened all of his presents I had got him and loved them all! I got him Nike Janoski's, McLaren 50th anniversary Links of London bracelet and pin, some tops, Uno as we played it all the time in Turkey and some Calvin Klein's. We then got up and had a fry-up which was lovely and waited for Max's parents and Sam to get back from Sam's football so that Max could open his presents from them. His mum and dad got him a driving experience to drive a Ferrari and Lamborghini! Exciting!
After presents, a few of Max's family came over for a piece of cake and to see Max obviously. We weren't allowed Max's karting birthday cake as it looked to good to cut up but Jane made a lovely sponge cake covered in Maltesers and chocolate fingers so we had that.
Once his family left, Jane dropped Max and Chris at the pub and then dropped me back home for a few hours before we went out for dinner in the evening.
They then came and picked me up again about 7:30pm and we went for a meal at coal which was lovely.
It was a really good weekend and I think Max is
glad to finally be 18!
Thursday, October 03, 2013
James' 18th!
On Saturday it was party time again at James' this time. He was 18 just after Lambo so he had a party a few weeks later.
Jenny came over to mine about 6 o'clock and I made us spaghetti bolognese as mum and dad were out at Auntie Mandy's. Once we were ready, Max then picked us up on his way home from work.
When we got to James' his parents cooked us a barbecue but me and Jenny forgot their was going to be food so we didn't eat a lot.
We then played beer pong, did shots and partied into the morning until we were tired as we all stayed at his.
In the morning James' mum also made us some lovely bacon sarnies!
Thanks for a good night James, hope you enjoyed it :D!
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