Post by tantalizintina on Mar 3, 2008 12:00:45 GMT
Hi there.... as this hpnd 2 any of u??? twice in 1 week?? Also my feelings...... how can i explain and am i selfish? we recieved 2 phone calls yest, the first was 2 tell us yes there was a bed & we were 2 have Lewis @ bch between midday & 1pm.. i was in the shower @ the time & geoff shouted the news 2 me... i broke down (again)... about 20mins later geoff called the hosp 2 ask about the parking there. He was told not 2 leave home yet but 2 wait 4 a call.... The 2nd call came @ aprox 12.15... the news? yes theres a bed but no surgeon as they had a back log from last week!! i breathed a sigh of relief tbh... I really want Lewis's heart fixed so y did i feel relieved that he wasnt goin in??? Do u think I'm selfish?
Yep Been there hunni, That happened to me last time. We had to wait 3 weeks for them to get in touch to rearrange another date, and then wheh they did they cancelled. I was 8 months PG at the time and the stress was really getting to me
I hope they manage to sort you out soon hunni. I know it really juggles all those emotions around, but by them time he actually goes in you will be more relieved over the fact its getting done... LOL
awww hunyou're not being selfish at all,the same happened to us we travelled 4 hours to great ormond street 3 times in 2 weeks each time to be cancelled, then they offered us the 23rd december and i refused it being his 1st xmas and i had the other kids to consider and they said i was selfish!!"!!!!!!!!!!!!!,,they then offered us the 2nd jan so off we travelled again to be cancelled, he finally got his surgery on the 1st february i told them not to offer us an appointment again unless they could guarantee it being done. . Anyway hun we all have a mixture of feeelings and emotions from nervousness to guilt to selfishness so do not worry yourself about your feelings hun it's perfectly natural by the way your other 2 sons are gorgeous too love shell,charlie and jasmin xxxxxxxxxx
Of course you're not being selfish Tina, your feelings are completely normal, you're torn between knowing he needs it doing but not wanted him to have to have it done. You must be feeling so mixed up with different emotions, its only been a few weeks since you gave birth too so don;t give yourself a hard time. Just try and enjoy the days you've got before he finally gets his appointment. Be strong and remember we are all here for you, take care, lots of love Claire xx ps, you've got three very handsome sons xx
Your not being selfish, your just being ripped apart. Gemmas was cancelled once when we were already at the hospital, they had done all the checks and tests then told us they couldnt do it. I felt so angry. Luckily we only had to wait a week for them to call us back. I really hope Lewis gets his op soon. Lots of love Debbie and Gemma xx
tina ur not being selfish!! we had to travel to alder hey by boat for georgias op they cancelled it on the mon then again the tues on the wed they said she would go down in the afternoon but then cancelled she finally got it done on the thurs!!!! it wasnt as if we could travel home either so we just had 2 wait for a bed to come free in intensive care. i was so stressed out i got ill and then they said if i was the same after the op they wouldnt let me in to see georgia!!
Post by sarahncharlimai on Mar 4, 2008 21:21:14 GMT
oh tina i really feel for you, i can symphathise a little as Charli needs a op and part of me wants it done asap so its over with and another part of me never wants her to have it done, your not being selfish its natural to feel that way, i hope you get another appointment soon and that it doesnt get cancelled again, lots of hugs sent to you love Sarah n Charli Mai oh and bump x
This just takes the mick really doesn't it! I know surgeons are busy but they are really playing with emotions here!! I can totally understand you not wanting it done but knowing it needs to be done! Once it's all over you'll be pleased and I'm sure there will be such an exciting change in him you'll have more than enough to think about then. Hope they get their act sorted very soon.
tina just remembered...max jogged me by mentioning the change in lewis after his op....take a pic of his hands n feet before the op then notice the change after its amazing wot you think is normal now to how they will be after.....i thought corys were quite normal in colour but then after the op they were soooo pink....maybe a pic is a bit far fetched but have a good look before and after....... hope the op happens soon...xxxxxx
Post by tantalizintina on Mar 12, 2008 21:28:29 GMT
hiya......update!! been 2 bch 2day... lewis's hole is trying 2 close but unfortunately if its left 2 close alone it will take 2 long n it will cause damage 2 his lungs..so the op's still on. The bonus side 2 it is he as 2 good valves either side of the hole which is a bonus.. Dr Miller said that he as an uncomplicated vsd...(can u?).. so now we wait 4 the call again! XxX
Post by pinkshell1110 on Mar 12, 2008 22:30:26 GMT
hi tina, charlie's VSD was uncomplicated too,and surgery wise it was .they said it was a very routine operation.unfortunately because charlie was so small when he was born they wanted him to weigh 4.5 kgs, 8lb ish, they had to wait til he was 9 months old and by then his lungs got damaged because they kept getting flooded with the blood that wasn't being pumped around his heart properly due to the VSD, it took a further 18 months after surgery for his lungs to dry out and be able to come off the oxygen, and now he has chronic lung disease, which leaves him prone to chest infections,croup and pneumonia.So in the long term it is so much better for lewis to have the surgery than to wait to see if it closes. charlie's was an extreme case tho hun, and it was a viscious circle cos he had to put weight on to have the surgery,but the VSD was making him extremely tired and he didn't have the energy to eat, that was why i t took so long and the fact that he only weighed 2lb when they discovered the VSD, so he had to put on 6lb which took us 8 months. hope you hear very soon babe lots of love shell,charlie and jasmin xxxxxxxxxxx
Post by pinkshell1110 on Mar 12, 2008 22:37:24 GMT
oops tina really,really sorry i just realised this could have frightened you hun, i really didn't intend to at all,i just wanted to let you know about the lung thing that your surgeon mentioned. Really really sorry hun if i did scare you lots of love hun shell,charlie and jasmin xxxxxxxxxxxxx
Well lets hope they get him in soon. Its good news about his valves being ok. He sounds like he's a tough little cookie and he'll be even stonger after his op, thinking of you xxx ps, I think I was in your neck of the woods today lol, I went to Ikea at Wednesbury xxx
Hi Tina, I feel pretty inadequate as I haven't experienced any of this with Jasmine but just wanted to say I'm thinking of you and little Lewis and I really hope he gets his op soon. I can only imagine how your emotions must be torn but I'm sure his surgery will make a great difference to his future so good luck with everything. Lucy x
Post by tantalizintina on Mar 19, 2008 18:02:43 GMT
yet again .......just had a call from bch... wanted lewis in 2nite 2 operate 2mrw.... i explained that lewis had his jab yest n she said she'd have a word with the surgeon n call me back. so there i was in tears again... thinkin this is gona b it cuz she said they'd flush out his jabs... then she called back n said the surgeon said bcuz he'd ad his mmr it was a no go but also they'd just had an emergency in so there wasnt a bed anyways..... then she added that theyre now lookin 2wards the end of nxt week so can we b on hold plz.....4th time lucky u reckon??? x
This is so so bad! I cant believe they are playing around with you like this. I know stuff happens and emergencies come in etc but there really must be a better system. You must be going through absolute torture at the moment and my thoughts and best wishes are with you. Try to keep strong.
Fingers crossed for next week then. i really hope it goes ahead this time for you then you can get Lewis home and start to enjoy him without having all this hanging over you. It must be so stressful for you. Take care and lots of love to you and Lewis xx
Will keep everything crossed for next week, hope it goes ahead so that you can get the op out of the way and move on. I really sympathise, your emotions must be all over the place!! Take care, Lots of Love from me & Harrison xx