Sorry again for lack of posting, I am fine so dont panic!
I can't honestly say I've been busy as such but I have been trying to sort some things out.
Important things first! NG feeding is still going very well, I'm managing the tube within about 30secs now and am not finding it quite so horrible as I was. I could never have imagined that (so far) I would have tolerated it so well with all my reflux probs (I dont think my drs did either!).
Now for the big news, yesterday was two weeks since starting the feeds officially (proper dose etc ) and i have gained (drum roll please.)..... 3KG!!!!! This means that I've gone from 42kg to 45kg and am now 7stone :)
I am amazed by how well its all worked and more than a little relieved. I feel much "safer " now and the stress lifted is incredible. I like to think of the NG tube as a good skill to have accquired, its going to stop me needing to force food so much during the day, and its something i can utilise any time i need to gain weight. So if I had an infection, or even any problems post transplant i could always up the feeds or restart them to sort it out.
I was also getting behind with my uni work, with all the worry and upheaval I was having some real issues concentrating. My current course ends the first week in June and i had two long essays to get done before then which was really stressing me out. However after I explained how worried I was to my tutor, he has pulled out all the stops and allowed me to drop the lesser essay as well as "holding my hand" for the remainder of the course. It wasn't until this was in place that I realised how much it had been weighing on me (pardon the pun!) and the relief I had now its sorted.
I'm loathe to speak to soon but I am feeling a bit happier now, my mood is still very erratic but I do feel very proud of what I have achieved in this last month both from a weight perspective and personally too.
In lesser news...I have some scrapbooks and crafting lined up now, so that should give me something to do in my spare time, small but relaxing hopefully and fingers crossed Ill have some nice albums to keep! And its my birthday very soon too, no plans as yet but looking forward to it all the same!
I hope your all doing well too at the moment and thanks again for all your support thats kept me going.
Saturday, 25 April 2009
Friday, 10 April 2009
Home again!
I'm home again, and in record time!
As you know, I went in on Monday and arrived just after lunch. The ward is mainly made up of Cf patients and because they often spend so much time in hospital the rooms are quite nice and some are very flash with large screen tvs, etc. My room was a single but pretty basic with a small "on the blink" tv and no phone to start off with, but it was comfortable and I had a laptop to keep me amused. That afternoon a nurse came in to talk me through putting my first NG tube down. I was very nervous but knew that getting the first one down would be a major hurdle for me. I was adament that I would do it by myself rather than have someone do it for for me. Much to my astonishment I passed the tube first time!
For those who are interested I'll describe how its actually done so just warning you before you read on.....
It literaly took under a minute, but was quite unpleasant as you would expect. The tube is very thin and flexible, and roughly 70cm long. I feed it up my nose, at the back there is a little resistance from the throat muscle but you gently push past this and into the throat. The tube is then at the top of my throat and if i opened my mouth you would be able to see it hanging down! This area is the trickiest as your natural instinct is to vomit the tube up so I have to swallow some water while pushing the tube down to help it go and to prevent the vomiting reflex. After that its relatively easy to push a bit further through, as I say the tube is about 70cm long and i need to get it down about 53 cm. Its then just stuck to my face with some dressing, I draw off some fluid and check the acidity with PH strip to make sure its in the right place, stomach = acid, then I connect to the feed pump. The feed is pumped through at a set rate and is taking about 10 hours to finish. In the morning i simply remove the dressing and pull the tube back out.
We increased the feeds slowly, and I'm currently on 600mls of feed which is the equivilant of 1200 calories which is working well (fingers crossed) I have to sit up to sleep though as with my reflux problems need gravity to help keep it all down as much as possible. So far to my astonishment I have tolerated the feeds very well and I think this is also helped by the fact that I dont need to eat so much/such rich food during the day. Although I do still need to eat as much as i can, the pressure is off a little.
The first night in hospital I was observed putting the tube down and helped to set up the pump etc by staff but after that I did it by myself for the next couple of nights. Everyone was amazed I'd done it so quickly, my dietcian was brilliant and she said I had "exceeded expectations". The doctors agreed that there wasnt much point in me sticking around, so I was discharged on Thursday and got home by 9.00 that night :) Total stay : 3 days!
It was daunting to come home. We have lots more supplies to find places for and to have to carry on with the feeds by ourselves but it is nice to be back. I am feeling a bit mixed at the moment, been pretty stressed and starting to relax again, worried that its all going a bit too well..., hoping the weight will start to go on now, depressed with all the extra upheaval with the new treatment and a million more besides.
I'll leave it there for now or this post could get very long!!! So many bits and pieces to write about...
Next time I'll hopefully be a bit less muddled! (although i wouldnt bank on it)
Hope you are all having a happy easter and thanks for all your lovely messages and prayers xx
As you know, I went in on Monday and arrived just after lunch. The ward is mainly made up of Cf patients and because they often spend so much time in hospital the rooms are quite nice and some are very flash with large screen tvs, etc. My room was a single but pretty basic with a small "on the blink" tv and no phone to start off with, but it was comfortable and I had a laptop to keep me amused. That afternoon a nurse came in to talk me through putting my first NG tube down. I was very nervous but knew that getting the first one down would be a major hurdle for me. I was adament that I would do it by myself rather than have someone do it for for me. Much to my astonishment I passed the tube first time!
For those who are interested I'll describe how its actually done so just warning you before you read on.....
It literaly took under a minute, but was quite unpleasant as you would expect. The tube is very thin and flexible, and roughly 70cm long. I feed it up my nose, at the back there is a little resistance from the throat muscle but you gently push past this and into the throat. The tube is then at the top of my throat and if i opened my mouth you would be able to see it hanging down! This area is the trickiest as your natural instinct is to vomit the tube up so I have to swallow some water while pushing the tube down to help it go and to prevent the vomiting reflex. After that its relatively easy to push a bit further through, as I say the tube is about 70cm long and i need to get it down about 53 cm. Its then just stuck to my face with some dressing, I draw off some fluid and check the acidity with PH strip to make sure its in the right place, stomach = acid, then I connect to the feed pump. The feed is pumped through at a set rate and is taking about 10 hours to finish. In the morning i simply remove the dressing and pull the tube back out.
We increased the feeds slowly, and I'm currently on 600mls of feed which is the equivilant of 1200 calories which is working well (fingers crossed) I have to sit up to sleep though as with my reflux problems need gravity to help keep it all down as much as possible. So far to my astonishment I have tolerated the feeds very well and I think this is also helped by the fact that I dont need to eat so much/such rich food during the day. Although I do still need to eat as much as i can, the pressure is off a little.
The first night in hospital I was observed putting the tube down and helped to set up the pump etc by staff but after that I did it by myself for the next couple of nights. Everyone was amazed I'd done it so quickly, my dietcian was brilliant and she said I had "exceeded expectations". The doctors agreed that there wasnt much point in me sticking around, so I was discharged on Thursday and got home by 9.00 that night :) Total stay : 3 days!
It was daunting to come home. We have lots more supplies to find places for and to have to carry on with the feeds by ourselves but it is nice to be back. I am feeling a bit mixed at the moment, been pretty stressed and starting to relax again, worried that its all going a bit too well..., hoping the weight will start to go on now, depressed with all the extra upheaval with the new treatment and a million more besides.
I'll leave it there for now or this post could get very long!!! So many bits and pieces to write about...
Next time I'll hopefully be a bit less muddled! (although i wouldnt bank on it)
Hope you are all having a happy easter and thanks for all your lovely messages and prayers xx
Thursday, 2 April 2009
hospital date
Have heard from the hospital and providing there isnt an emergency that needs the bed, I will be going in on Monday to start Nasal Gastric feeding (learning how to pass a tube up my nose and down my throat so I can feed overnight). I am glad that things are going to start moving forward but I am also scared stiff and wish that I could shut myself away and not have to deal with any of this.
I dont know how long I will be kept in for, it depends on certain factors. The sooner I am able to get the tube down myself (ill be doing it myself from the beginning) the sooner i can start feeding, so thats a big hurdle. Once the tube is down, the feeds will be introduced very slowly to see how I tolerate them. My stomach is very sensitive so if it doesnt agree with me or we go too fast then I will end up feeling/being sick, stomach aches etc. If we find that im unable to tolerate certain feeds thn we can try different types etc to see what suits me, we will start with the highest calorie feeds first.
So it all depends on how quickly these things get sorted and how well i respond as to when I can come home.
I do think this is going to help me and like I said to my mum, at the moment I am wishing that the transplant call wouldnt come. This sounds bad but when youve been told so bluntly that at my current weight I would be unlikely to survive the op, it takes away that want and hope you have. Once I start gaining some weight I know that I will start t feel more reassured again.
Probably wont update while Im in as not sure what will be happening but if i can I will. Much love xxx
I dont know how long I will be kept in for, it depends on certain factors. The sooner I am able to get the tube down myself (ill be doing it myself from the beginning) the sooner i can start feeding, so thats a big hurdle. Once the tube is down, the feeds will be introduced very slowly to see how I tolerate them. My stomach is very sensitive so if it doesnt agree with me or we go too fast then I will end up feeling/being sick, stomach aches etc. If we find that im unable to tolerate certain feeds thn we can try different types etc to see what suits me, we will start with the highest calorie feeds first.
So it all depends on how quickly these things get sorted and how well i respond as to when I can come home.
I do think this is going to help me and like I said to my mum, at the moment I am wishing that the transplant call wouldnt come. This sounds bad but when youve been told so bluntly that at my current weight I would be unlikely to survive the op, it takes away that want and hope you have. Once I start gaining some weight I know that I will start t feel more reassured again.
Probably wont update while Im in as not sure what will be happening but if i can I will. Much love xxx
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