Disaster magnet!
Time to finish that post I started! Sorry I've left it so long I'm sure you all understand though ; )
I left off last time having just met the team who are caring for me and arrangements were being made for me to get my Hickman line so they could start my TPN. As mentioned before, they agreed to arrange for me to have sedation for my line insertion because local anaesthetic doesn't work for me (because of my EDS). They initially thought I would have to wait a while and they had planned to place a temporary line while I waited. As per usual the plan changed again and they managed to get me a space on a list at another hospital in Leeds, (Leeds general infirmary) meaning I didn't need the temporary line after all! My NJ tube had blocked the night before so it was perfect timing considering I have no other route for meds etc.
Wednesday morning came round and everything went as planned. The patient transport arrived on time to take me over there and they were expecting me when I got there, which is always good! When I got into the prep room before the procedure the clinician came in to sort out the final bits of paperwork before taking me in. As he was explaining the procedure it dawned on me that he was planning to use a local anaesthetic for the procedure.....oh boy! I soon spoke up and asked if he knew about my problems with locals...I was met by a blank expression....oh oh! It turns out that they had requested for me to have sedation not realising that this wasn't appropriate considering that it just makes you relax...it doesn't mean that you won't feel pain in the event of the local not working. The clinician totally blew his lid and told me to tell the bleeping bleeper who organised it that he was a bleeping bleep and if they expected me to cope with it under sedation then they should come and have it done like that themselves and see how it feels lol. He then explained that they didn't have an anaesthetist available to give me a general anaesthetic and he wouldnt do it without one....oh dear lord what a nightmare! I explained the whole situation surrounding my need for the line in the first place and he got my notes out to have a look....hmmm it says in your notes that you have a complex medical history but they have only supplied me with 5 pages of notes!!! It wasn't looking good! Luckily, the theatre nurse who I had been chatting to went in search of an anaesthetist for me....and returned 10 minutes later with good news! She had managed to collar an anaesthetist between cases and practically shoved her into the room lol. So, after all of that I finally did get my line, under a general anaesthetic and I can safely say I didn't feel a thing lol. Someone must have been watching over me x
So, I'm all set up and the TPN is running at long last! Yay....fooooooooood!
However the setbacks keep on coming and it hasn't been as plain sailing as expected. I was looking forward to no more needles, no more face tubes and most of all, some reliable nutrition. Unfortunately, they placed a single lumen tube, meaning that they could not administer any medication via the Hickman and I still have to face the daily blood draws but hey, a line is a line and if I get some nutrition that's the main thing!
I was booked in for a new NJ tube this morning as a means for administering my meds but this is me remember....it got cancelled! I have no idea when they will be doing it now so I'll just make the most of having my face back for a while!
On the positive side, I aced my first class in TPN training and I had a wonderful surprise visit from a young girl named Hannah and her mum Carol, who I had met through this blog a while ago! We have tried to get together many times before but one of us always fell ill before we actually got together. It was great to finally meet them and put faces to names! I must also say a huge Thankyou for the beautiful pink roses they brought me....all the nurses are jealous!
I didn't expect the road to be easy but despite all the drama I'm happy in my own little way, I know I'll get stronger and I know that I'm safe....that's what counts to me. You could throw anything at me right now but I'd still smile regardless xxxx
I left off last time having just met the team who are caring for me and arrangements were being made for me to get my Hickman line so they could start my TPN. As mentioned before, they agreed to arrange for me to have sedation for my line insertion because local anaesthetic doesn't work for me (because of my EDS). They initially thought I would have to wait a while and they had planned to place a temporary line while I waited. As per usual the plan changed again and they managed to get me a space on a list at another hospital in Leeds, (Leeds general infirmary) meaning I didn't need the temporary line after all! My NJ tube had blocked the night before so it was perfect timing considering I have no other route for meds etc.
Wednesday morning came round and everything went as planned. The patient transport arrived on time to take me over there and they were expecting me when I got there, which is always good! When I got into the prep room before the procedure the clinician came in to sort out the final bits of paperwork before taking me in. As he was explaining the procedure it dawned on me that he was planning to use a local anaesthetic for the procedure.....oh boy! I soon spoke up and asked if he knew about my problems with locals...I was met by a blank expression....oh oh! It turns out that they had requested for me to have sedation not realising that this wasn't appropriate considering that it just makes you relax...it doesn't mean that you won't feel pain in the event of the local not working. The clinician totally blew his lid and told me to tell the bleeping bleeper who organised it that he was a bleeping bleep and if they expected me to cope with it under sedation then they should come and have it done like that themselves and see how it feels lol. He then explained that they didn't have an anaesthetist available to give me a general anaesthetic and he wouldnt do it without one....oh dear lord what a nightmare! I explained the whole situation surrounding my need for the line in the first place and he got my notes out to have a look....hmmm it says in your notes that you have a complex medical history but they have only supplied me with 5 pages of notes!!! It wasn't looking good! Luckily, the theatre nurse who I had been chatting to went in search of an anaesthetist for me....and returned 10 minutes later with good news! She had managed to collar an anaesthetist between cases and practically shoved her into the room lol. So, after all of that I finally did get my line, under a general anaesthetic and I can safely say I didn't feel a thing lol. Someone must have been watching over me x
So, I'm all set up and the TPN is running at long last! Yay....fooooooooood!
However the setbacks keep on coming and it hasn't been as plain sailing as expected. I was looking forward to no more needles, no more face tubes and most of all, some reliable nutrition. Unfortunately, they placed a single lumen tube, meaning that they could not administer any medication via the Hickman and I still have to face the daily blood draws but hey, a line is a line and if I get some nutrition that's the main thing!
I was booked in for a new NJ tube this morning as a means for administering my meds but this is me remember....it got cancelled! I have no idea when they will be doing it now so I'll just make the most of having my face back for a while!
On the positive side, I aced my first class in TPN training and I had a wonderful surprise visit from a young girl named Hannah and her mum Carol, who I had met through this blog a while ago! We have tried to get together many times before but one of us always fell ill before we actually got together. It was great to finally meet them and put faces to names! I must also say a huge Thankyou for the beautiful pink roses they brought me....all the nurses are jealous!
I didn't expect the road to be easy but despite all the drama I'm happy in my own little way, I know I'll get stronger and I know that I'm safe....that's what counts to me. You could throw anything at me right now but I'd still smile regardless xxxx
Well this is all very overwhelming to me I am and 16 and alsojust got diagnosed with EDS. It is creating a huge lifestyle change, I used to be very much athletic and enjoyed running and biking. I haven't ran in months or biked. I havent told but a few people like im embarrassed by it (I know that sounds stupid) honestly I just want to know what my future holds. This is just been craziness this last few months and out of enrgey to keep up with it. I have been blessed with a few close friends who have kept me going even though I didn't want to.
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