hi everyone...have not been on for a while as everything's been a bit hectic. dd was discharged after 4 days (she was admitted for a high bp and then a fever) but the morning after we got home, she suddenly had a fever again and was admitted again! we are back home now, and hopefully will be for a while!! i am still adjusting to her new meds schedule, it is crazy, it starts a 6am with an antifungal that must be taken at least 1-2 hrs apart fr food and other drugs esp her anti graft rejection meds. then followed by penicillin half an hour later as a prophylaxis against strep etc, then followed by prednisolone steroid and an antiviral and magnesium supplement an hour later. and if its mon and tue, woohoo it's bonus bactrim day to prevent pneumonia. then she gets to eat breakfast and then 2 hrs later, the antigraft rejection meds. she also needs calcium and potassium supplements. 6pm the whole cycle repeats itself with antifungal, penicillin bla bla bla and ends at 10pm. i'm really exhausted and i woke up the other day with vertigo and could not get out of bed until around noon so her meds schedule was disrupted a bit. vaguely heard her coming in to say she was hungry and i told her to just get cornflakes from the cabinet....am still feeling a bit under the weather two days later.
other than that she is fine, her skin is changing (her skin turned very dark after the transplant and is now peeling away in places, revealing new fairer skin). apparently it is normal. her bone marrow result came out, it is good, negative for disease thank god. she is doing so well that the transplant doctor told us she can now drink yoghurt drinks, eat out (thank god! i was so exhausted the day before cooking and cleaning from 7am to 7pm and not being able to sit down the whole day! i hate steroids!!!) and even go out! as long as it is not too crowded so she suggested high end malls with designer shops. i was like err..theres not much she can look at there..and she laughed and said she could windowshop at Tiffany's! ha.ha.ha.
am having issues with dh, he says he is fed up and i have not been giving him enough attention. he is away for the weekend as he says he needs a break, from work and stuff.
unbuckle i completely understand about all the interruptions! here it starts at 5am when the nurses ask dd to pee, and then at 6am when they measure her girth and take her weight. and then start her med sched...jr doc comes in ard 7.30am to check on her...8.30am the registrar...10.30-11.30am the sr consultant and consultant...12pm it's lunch...2pm the jr doc...then i get a teeny bit of a break but then she gets bored and then i have to help her shower...6pm it's her meds all over again.7pm dinner and in between of course it's all the beeping and checking of bp and temp!!!!! i wish someone would invent a drip that would actually automatically call the nurse when the drip or flushing finishes!!!!!!!!!!!!!!!!!!! surely someone would have thought of that by now!!!! and re names, i never expected them to know my name haha, there are so many parents...but the other day, one of our favourite nurses asked me what my name was and i said will you remember it?? and she said yes! i was so surprised. one or two of the nurses here are really lovely, there is one that likes to go out and buy toys for the kids. she also gave me some Victoria's Secret hand lotion after i showed her my hands were covered in cuts and scaly skin thanks to all the constant alcohol rubbing!
hope that everyone else is ok despite it all...minmooch i know what you mean...i wish i could turn back to a time when dd was healthy...i wish our lives were normal...but that will never happen...even if dd is cured our lives will never ever be the same....xoxoxoxo to everyone on here....
Aunty Maggie, dd and I are also in a different country from our family and friends and they are always asking how they can help. Twunk's suggestion re money is practical and really useful. Our medical bills are really quite horrendous. My dd has had a bone marrow transplant in September and blood tests on donors and donor searches on the worldwide registry were not covered by insurance. The cost to procure the donor cord blood which was eventually used in her transplant was also not covered by insurance and cost us something like 12,000 british pounds. all in all, we spent quite a lot of money on this, and this does not include our daily expenses such as my meals (if i have time, i go down to have 3 meals a day at the cafeteria), extra snacks for dd (as she hates the hospital meals which are really bland and overcooked), taxis (we don't have a car here), and things to occupy her time with such as books, toys, arts and craftsy things. We are very fortunate that they have a charity that runs a library here in the ward which is very well-stocked with all sorts of board games and books and electronic gadgets such as dvd players, psp, nintendo, xbox etc. They are such a godsend. When dd was warded for over a month during the transplant, the social workers came and lent her an xbox and a basketball net! as the doctor said she needed to exercise a bit, and she also borrowed their psp and nintendo, and a dozen games! they also came in every day with lots of new arts and craftsy things to occupy her with. if it is tricky for you to send actual things, maybe you could send over virtual stuff? I got dd a kindle after a while, and told friends and relatives that they could send over amazon e-vouchers for dd to buy e-books with on her kindle....unfortunately we are in asia and we are unable to buy online games and videos but perhaps your relative is able to if they are in europe or the US. that would be really useful.
also a sim is useful, as unbuckle mentioned....
surprisingly enough trazzletoes, i always pack lots of books and dvds for myself and NEVER get to read or see any!!!!!!!! I also ambitiously borrow lots of magazines at the library and then have to return them unread when we are discharged!! I once borrowed a dvd boxed set on our social worker's recommendation and then the doctor said dd could go home in a couple of days and i frantically had a two-day marathon to watch the damn thing!! Way too busy during the day what with all the nurses and doctors and housekeeper coming in every minute and then at night I just collapse into bed!
One of the best things we ever got (which was in a gift pack from the charity, they keep giving us stuff!) was a hot water bottle! even though we are in a hot tropical climate, the aircon in the wards are really fierce! and even dd can't tolerate it, and she usually loves it cold. so that might come in handy. she gets very upset if i forget to pack it!
twunk's suggestions re fleecy blankets, dressing gowns and pyjamas are very good too. if the child has a hickman line or chemoport in the chest, it will need to be button-up pyjamas, i used to ask everyone to buy these for dd. not easy to find these esp warm fleecy ones in this part of the world.
sorry if that was a bit rambly, i am still feeling a bit out of it!
in a nutshell, these are useful:
dvds/movies
computer games, ipad, psp, nintendo etc
board games eg Pictureka
card games eg Uno
arts and craftsy projects: beads, paint by numbers kits, blow paints (helps to exercise the lungs which can be impaired by chemo), scrapbooking etc
e-books if they have a kindle, otherwise, books and magazines (if they are in the mood to read)
toiletries for both parent and child! I go through tubs of lotion in the ward as my hands and feet become very dry especially the hands due to all the alcohol rub.
maybe vitamins for the parent?? i need these to survive.
sim card
money
hth.