Starship - What do I need to know?
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Topic: Starship - What do I need to know?
Posted By: KiwiL
Subject: Starship - What do I need to know?
Date Posted: 23 September 2009 at 5:28pm
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After continuing to decline, we're finally being admitted to Starship for a multidisciplinary assessment for Jackson.
I can't believe we're finally getting this after months of asking for it. There's even a specialist feeding team we are being booked to see, as well as a paediatric gastrointerologist. Why it's taken this long, I don't know. I am pleased it's finally happening though. BUT I am really frightened about going up there. Chances are we are going to be there for two weeks, maybe more. Matt will come for the first week. But it's still a long way from home and all our support networks. I am scared that the doctors will find something, but equally scared that they will not find anything. What do I need to know about staying at Starship and Ronald McDonald House? Those of you who have stayed before, can you tell me a bit about your stay? Staying in Wellington Hospital many months ago was horrible - noisy, slow to get anything done, no facilities etc. Will we get fed there, or do we need to be prepared for a very expensive couple of weeks? Are there buggies to use? Toys for Jackson to play with? What are the doctors and nurses like? I am so nervous I feel like crying. But this should be a good thing, right? |
Replies:
Posted By: cuppatea
Date Posted: 23 September 2009 at 5:51pm
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I have no advice. Good luck though and I think it will be a good thing that they are finally looking into it. I also cannot believe it has taken so long. ------------- 
 
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Posted By: kellie
Date Posted: 23 September 2009 at 5:59pm
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Hey I don't know much sorry but just wanted to say good luck and I hope that Jackson gets better soon.
All I know about Ronald Mcdonald house is that it has a very well equipped kitchen. ------------- 
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Posted By: Maya
Date Posted: 23 September 2009 at 6:23pm
The best part is, I'll be able to come and visit 
I don't know much about RMH, have only been there to visit, but Starship itself is pretty awesome as far as hospitals go. One of you will room in with Jackson, breakfast is provided but not other meals, altho if you are staying at RMH they do provide some meals I think? They have a playroom on each floor, and play therapists that come round each day to lend you toys and books and talk to you about keeping your child entertained. Not sure about buggies, but they provide nappies. Can't remember about wipes, from memory we've always used our own as I think they expect you to use those yucky paper towel thingies. I know hospitals are pretty horrid places, but when my kids are sick, there's no place I'd rather be. And try not to worry about your support networks - I'm sure we can help you create one up here! I'm a Starship frequent flyer pretty much (there are a few of us on here  ) so if you have any other questions, yell out. And like I said, we'd love to visit, or even break you out of the hospital for a walk in the domain...-------------  Maya Grace (28/02/03)
 (02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: catisla
Date Posted: 23 September 2009 at 6:25pm
 Laurie
I will miss you! When are you going? And thank goodness they are finally listening to you! ------------- |
Posted By: Bobbie
Date Posted: 23 September 2009 at 6:53pm
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I know you're nervous but this is such good news - I'm sure there will be positive stuff coming out of this for you all. -------------  
 
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Posted By: Rovic
Date Posted: 23 September 2009 at 7:28pm
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Not sure how things are in Auckland, but a friend was in Wellington RMH for about 6 weeks and I can't praise them highly enough. As Kellie said, they had a very well equipt kitchen and a couple of times a week local bisinesses came in and cooked a meal for those staying there (eg Westpac offices from around Wellington came in and did dinner every Tuesday night). Even though I lived in Wellington, I stayed there with her 3 nights on 3 nights off as her DH had to go back to Auckland. The staff and volunteers were amazing and so very supportive. Also, the other people staying there created their own support network with themselves. Hope things go well for you ------------- http://alterna-tickers.com"> 
http://lilypie.com"> 
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Posted By: LeahandJoel
Date Posted: 23 September 2009 at 7:35pm
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Oh Laurie i'm so glad that you and Jackson are going to be seen and hopefully you will get to the bottom of it once and for all. I'm sorry that I can't be closer so could come and visit but i'm sure you will find others who will. Good luck with everything hun and keep us posted on how you are doing....you know we are all supporting you from afar!
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Posted By: JoJames
Date Posted: 23 September 2009 at 8:29pm
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Hey, HOORAY that things are happening for you, hope they can figure out answers.
I used to be a nurse there and they are mostly really lovely, the drs are great and really good at explaining things, but like most places if you aren't feeling listened to or aren't feeling things are happening for you just keep asking the drs, they are there to help you out. You may find that things happen slowly on weekends, which has always really annoyed me. Depends which ward you are on cause some of the single rooms have toilets otherwise there are parent toilets and showers on all the wards, also there is a washing machine for all parents to use on one of the levels. I'm not sure about food, but I know RMD will have all the facilities to cook, if they don't do it for you, Play specialists are great! they will have toys but bring some of Jacksons favorites. I would bring my own buggy cause if they do have one, I wouldn't be sure of the cleaniness of it and you may not be able to use it. And I would get really good plans from them for the day, like approximate times for tests and such so you can take Jackson for a walk around the domain otherwise you will go a bit crazy. I hope that things go well for you guys, best of luck ------------- http://www.alterna-tickers.com"> 
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Posted By: MonicaMouse
Date Posted: 23 September 2009 at 9:56pm
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pm nikkib from oct 07 mums, she may be able to give you the answers you want and more ------------- 
Blair 15/10/2007 Daniel 30/07/2009 |
Posted By: tropics
Date Posted: 24 September 2009 at 7:24am
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Just wanted to pop in and say that Im so glad for you guys your finally getting the assistance you need, all the best hun ------------- http://lilypie.com">    [/url]
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Posted By: susieq
Date Posted: 24 September 2009 at 9:38am
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Glad to hear this and good luck and yes Starship should be good ------------- susie |
Posted By: blondy
Date Posted: 24 September 2009 at 10:42am
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so glad too that someone is finally taking Jackson's feeding issues seriously. Hope the stay goes well -------------  
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Posted By: Henna79
Date Posted: 24 September 2009 at 11:02am
| Laurie I am so glad this is finally happening for ya!! |
Posted By: Nikki
Date Posted: 24 September 2009 at 11:34am
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Jake had heart surgery at 6 weeks so I lived there for almost a month .... but just in the room with him, not in Ronald McDonald house as we are from ak. I got food cos I was breastfeeding, but I don't think the mums who weren't got food ... but of course all food is provided for the bubs if they're eating and they had formula too. Naps are provided but sometimes they can be a bit stingy with them (you'll get to know the nurses who aren't, haha), so I'd take a few just in case. They didn't have wipes (I think maternity wards have them donated if at all, but not the other wards). The play specialists are great!!! Make friends with them! They even sat with Jake while I quickly showered at times! and yes, HEAPS of toys available.
I found most of the nurses and drs really great. I'm not sure what you're going for, but I found on the cardiology ward they really expected you do do alot of work yourself - giving meds, tube feeding etc, so be prepared for that. and yep, you may be mucked around at times with tests etc as they are pretty busy. There were buggies available both there and when we went in with pneumonia a year later on a diff ward - but I took my own (very handy if you're trying to get them to have a nap unsuccessfully) or if you want to go for a walk and not have to ask for one. The room I was in had my bed and a cot for Jake. There were parent loos / showers, 2 kitchens, a lounge and some washing machines on the ward. Sometimes they run out of plates, so maybe take a plastic one just in case. They had toasters and bread, tea coffee etc in the kitchen plus left over sammies, yoghurt, fruit. Oh there are also a few parent parks (free, but they get taken quickly) if you are driving in and out ... so ask about them when you get there if you need a pass. We found out about them in our last week there!!! Grrrr!! Good luck!  ------------- DS (5yrs) and DD (3yrs) |
Posted By: minik8e
Date Posted: 24 September 2009 at 12:31pm
| tashzmum from here stayed at RMH when her girls were born because of Caroline's heart surgery. I'm not sure she posts on here anymore, but I went up to visit them while she was there. They had their own large drawer in the communal kitchen for food (they had to supply the food) and also a drawer in the huge fridges/freezers. The kitchen is really nice - has all the pots/pans and plates and stuff you need. They also supplied the milk/coffee/tea/milo for parents who were rooming in. The room they were in had a double bed, TV, and a bathroom - small but functional. Very nice though!! This was a couple of years ago now though, but I can't see it having changed too much. |
Posted By: emz
Date Posted: 24 September 2009 at 12:39pm
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Sorry don't know about Starship but didn't want to read and run
One piece of advice though - make sure you take full advantage of every facility. If they provide wipes, nappies etc - tuck some away just in case the next nurse is a bit stingy Same with food if you don't get given it (I know I didn't down in Chch but starship might be different) - take all the biscuits, fruit that doesn't get eaten and put it to one side for snacks.
Take every advantage of the play specialists - they make such a big difference to the kids' moods and recovery. And also if they have a playroom where you can leave Jackson while you go and have a shower or something - dont' hesitate to do so. They're trained to deal with anything, and nurses are on call all the time. Sometimes you just need a bit of sanity time. Good luck, I hope it all goes well and you get the help you and Jackson need. |
Posted By: AzzaNZ
Date Posted: 24 September 2009 at 12:52pm
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I havent stayed at RMH Auckland but have visited and the facilities are amazing. They have very well equipped kitchens and although I dont think they cook for you they do have a lot of food sponsored.
When I went they even had a separate room for teens with playstations and the like and a room where younger kids can continue with their schooling. Good luck and I hope it all goes well! ------------- http://lilypie.com"> 
http://lilypie.com"> 
http://intermittentblogger.wordpress.com |
Posted By: kabe
Date Posted: 24 September 2009 at 2:51pm
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PM nikkiB, as she's from welly and has spent alot of time at RMH with her wee man. She was last there only a couple of weeks ago.
I work at Auckland Hospital and am always available to meet for coffee ------------- http://alterna-tickers.com"> 
http://lilypie.com"> 
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Posted By: josephnia
Date Posted: 24 September 2009 at 3:31pm
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We were only at Starship for a day stay surgery but all the nurses and doctors were absolutely wonderful, explained everything that was going to happen, didn't rush and gave us plenty of time to ask questions without making us feel like we were inconveniencing them. Totally put my mind at ease and they all took such good care of my little guy, I sincerely hope that this will be your experience too
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Posted By: Bizzy
Date Posted: 24 September 2009 at 4:06pm
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i know nothing about starship either... but can offer myself up as a support person if you need/want me! ------------- http://www.myfitnesspal.com/weight-loss-ticker"> 
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Posted By: DaisyAngel
Date Posted: 24 September 2009 at 5:22pm
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No wipes, so either bring your own or use their flannels. Bring your own nappies. Breastfeeding mummies get provided with meals on the ward where your baby/child is. We had a room at the Ronald McDonald Extension (as we are from AKL) while Roman was in PICU & HDU....different to the Ronald McDonald House...so I can't give you much info about the house, I believe at the house you have your own self contained apartment as such and you are responsible for your own meals other than one night where they provide a meal?, while with the Room that we had (the rooms are down a hallway off the Ronald McDonald Family Room in Starship) it was just a little room with enough room for a single bed & a trundler (sp). But it meant that both me and DP were able to stay and be near him while he was in PICU & HDU if anything happened....The Family Room provides breakfast, lunch & dinner as well as snacks & drinks throughout the day - FYI the Family Room is avaiable for use to any parents/children who are there at Starship.... When Roman was in his own ward room only one parent at a time was allowed to sleep over with him. Definitly ask for a parents parking permit - there is only a certain number of parks so they can be hard to get a spot even if you do have a pass. Try not to take your car out too many times lol. If you do miss out on getting a spot - ask your ward reception for a discount voucher for the pay parking - instead of paying $20 a day for parking you only have to pay $10 hmm what else can I think of..... All the staff there were great, they really tried to make a hard time as pleasant as possible...... Starship saved my baby's life so I love them! ------------- 
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All I can say about Starship is they are fantastic!!! Roman had open heart surgery on the 25th July and he was in hospital from 21st July to 8th August. Same comment as Nikki - Ward 23B (the Heart Children's Ward) & PICU they do expect you to be very hands on with meds, changing nappies, tube feeding, flannel wipe downs etc, but I found this helpful it gave me things to do to "look after" my baby and its stuff you would normally do at home (change, bath, feed etc) so it made me feel a bit useful even though I was feeling completely & utterly useless IUKWIM...Posted By: NandC
Date Posted: 24 September 2009 at 6:02pm
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I work at Auckland Hospital too and have to say the RMH people are awesome. They should be able to sort out parking for you there so make sure you check that out. They have some shared/group meals but not every day, but there is a great kitchen facility (also a good place to meet other families) and there is a decent supermarket down the road in Newmarket (on the other side of the Domain). Most of the Starship staff are great but as usual you get the odd cranky person! The Tiny Bites cafe at Starship is OK value for lunches but the dinners are pretty average. Over in the main hospital there is a convenience store, post office/newsagents, subway, muffin break and Planet Espresso who do GREAT coffee - only a couple of hundred metres from Starship so a great place to go for a quick break or if you are waiting for your little man to come out of any procedures they dont let you go to.
Good luck - hope they get some answers for you! |
Posted By: kiwisj
Date Posted: 24 September 2009 at 6:29pm
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Laurie. I'm so pleased for you and Jackson that they're finally doing something. Best of luck for your stay at Starship.
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Posted By: Maya
Date Posted: 24 September 2009 at 7:49pm
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Another thing with parking - it is a bit of a PITA, but the barriers are up from 11pm each night till around 6am so I used to go down and take the car out and put it back in again to get a new card so the parking didn't mount up. And the $10 vouchers are good, but you do have to ask for them. ------------- Maya Grace (28/02/03)
(02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: KiwiL
Date Posted: 24 September 2009 at 7:50pm
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Thank you SO much everyone for all the really useful information, I really, really appreciate it. People have mentioned stuff I hadn't even thought of!
I think we will take our buggy, even though it is massive. If we do end up being there for 3 weeks, the last thing I want is to have to go and ask for one all the time. I don't think we'll hire a car, as nice as it would be we just can't afford it. The "system" has been good to us so far - hospital is paying for both DH and I to fly up and back. DH will only be going for a week due to work committments, but I really couldn't do that first week on my own. I am so scared and nervous. I know if there's anywhere that will find the issue, Starship is the place. But I am more scared of not finding anything, than actually finding something medically wrong. Because then what?! This journey so far has been so hard, and I am so tired. I really hope that this gets us some answers cos I feel like I can't do this for much longer.
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Posted By: kakapo
Date Posted: 24 September 2009 at 8:22pm
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Posted By: yummymummy
Date Posted: 24 September 2009 at 9:06pm
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Sorry don't have any suggestions but really hope they'll find what's causing this
When are you coming up here? ------------- http://lilypie.com">  http://lilypie.com">
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Posted By: HoneybunsMa
Date Posted: 24 September 2009 at 11:34pm
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There is a chinese shop across the road and a couple of cafe as well across from the main hospital if your up for something other then what the hospital has to offer. My brother lived on the chinese when his son was born lol ------------- http://www.myfitnesspal.com/weight-loss-ticker"> 
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Posted By: emachan
Date Posted: 25 September 2009 at 9:09am
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Hey Laurie - I don't know a thing about Starship - except everyone says its awesome - the same with RMH.
I just want to wish you guys all the best - and hopefully you'll find out some answers!!! ------------- http://lilypie.com" rel="nofollow">  DD#1 Sept 08 DD#2 Oct 09 |
Posted By: fire_engine
Date Posted: 25 September 2009 at 11:26am
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Ditto everyone else - YAY you're getting seen by the specialists (bout bloody time) but BOO you have to leave home.
We've been on the heart ward too and found the staff were great. Lunch is free at the RMH Family Rooms and it's a great place to chilll (and it has wireless broadband!) I know how hard and lonely it is to be in hospital by yourself so would be very happy to come and visit  ------------- Mum to two wee boys |
Posted By: NikkiB
Date Posted: 25 September 2009 at 4:50pm
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Hi Laurie
My family and I have been up to Starship twice this year with my son and I can tell you that its extremely daunting thought when you are so far away from all of your family and support network, but I’ve found that no other hospital has anything on Starship (I’ve experienced Wellington and Lower Hutt hospital). The RMH is fantastic! You will need to buy your own food, but there is great cooking facilities and about 3 nights a week, dinner is put on for you buy volunteers. The staff at the RMH are also awesome and will make you feel right a home straight away. I suggest that if Jackson is staying at the RMH with you, then you might want to take a small selection of his favourite toys for your ‘room’. The RMH has plenty of toys/books/play areas for the little ones. I also suggest you take a pram. The RMH does have prams you can use, but it’s never a certainty that a pram will be available when you want to use it. Starship is just a hop, skip and a jump from the RMH, but the Auckland Domain is right next door to the hospital grounds – great place to go to get away from the hospital for a little while. The RMH provide breakfast and endless amounts of bread. There is also food in the communal cupboards that you can help yourself too. Milk, tea and coffee are also provided. If you have a car, then you’ll get free parking under the RMH. I also find Starship great. Unlike other hospitals, Starship is obviously designed for children. And because family if very important to children, they are very family oriented. I found the staff very friend and extremely helpful. I really cannot praise them enough. My son’s formula was provided, but I had to provide nappies while he was in 23B (the heart ward). I was not feed, because I’m not a breast-feeding mum. Good luck. If I can off any more advice please let me know. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: lilfatty
Date Posted: 25 September 2009 at 7:02pm
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I think that feeding only bf mums is interesting. ------------- Mummy to Issy (3) and Elias (18 months) I did it .. 41 kgs gone! From flab to fab in under a year  http://www.femininefitness.co.nz/category/blog - LFs weight blog
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Posted By: NikkiB
Date Posted: 25 September 2009 at 7:41pm
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Me too.....it's not like us non breastfeeding mums don't need our energy! But I guess there is only so much funding going around. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: kellie
Date Posted: 25 September 2009 at 8:44pm
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I guess it is because they are providing the food for the baby whether it be via the mother or formula.
Would be good to get like breakfast or something though. -------------
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Posted By: KiwiL
Date Posted: 26 September 2009 at 8:57am
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Well, we're off tomorrow night. I honestly believe it is not a moment too soon.
Jackson is very weak at the moment. He crawls slowly, falls over a lot and won't let me put him down at all. He sobs if I try. He is so think it breaks my heart. I wish we knew what is going on. I am so scared that they won't find anything, cos I just don't see how we can carry on like we are. He won't suck his bottle anymore, I basically have to squeeze the teat so milk drips into his mouth for as long as he will let me. I feel so down at the moment. I pray that Starship will be able to help us. Is there a supermarket nearby the hospital? We can't afford to eat lots of instant-type food so will have to see what we can make up. Thanks for all the support guys. xxx |
Posted By: catisla
Date Posted: 26 September 2009 at 9:42am
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Laurie
Hope it all goes really well - don't forget i am at the other end of the phone if you ever need it (even if you just want to send a ranting text!) Hope it all goes really well for you, DH and Jackson ------------- |
Posted By: HoneybunsMa
Date Posted: 26 September 2009 at 9:57am
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There is foodtown down in either new market or quay st the link takes you directly past the new market one and stops outside the hospital. It runs in a circuit and is only one stage. Might be a little trip you can do one day? http://www2.maxx.co.nz/assets/timetable%20central/Link%20Brochure_Oct%2007%20web.pdf - linky to timetable map ETA that the new market one is inside 277 shoping mall upstairs on level2 I think it is. Ask the bus drivers to let you know. Do it in the middle of the day as peak hour those buses are packed and often with school kids who are annoying. Oh and the link buses are green you'll know what I mean when you see them. If just wanting to go down the road to supermarket then back if you go directly down to new market take the bus from the oother side back up or you'll do the loop which can take a few hours ------------- http://www.myfitnesspal.com/weight-loss-ticker">
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Posted By: NikkiB
Date Posted: 26 September 2009 at 10:18am
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The RMH has a van that they use to run families to Foodtown.
Good luck. I certainly hope you get the answers you are after. I know others have said this, but you are going to the best possible place for Jackson. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: KiwiL
Date Posted: 26 September 2009 at 10:37am
| Thanks. I know - if anyone is going to find it, it's going to be these guys. I have a list of things I want checked, I just hope they'll check those things for me!! |
Posted By: ?Lolly?
Date Posted: 26 September 2009 at 12:33pm
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Good luck Laurie, I hope the doctors can figure out whats going on with Jackson. I am sure that Starship is the best possible place for him to be right now.
I was going to say about the gates being lifted at 11pm but Emma beat me too it! ------------- Captain Chaos (5) & the Trouble Monsters (2!) 
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Posted By: tropics
Date Posted: 26 September 2009 at 12:35pm
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all the best Laurie please keep us updated with how Jacksons going xox ------------- http://lilypie.com"> [/url]
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Posted By: Nikki
Date Posted: 26 September 2009 at 1:37pm
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Good luck!!
Theres a subway across the road too I think. Re feeding BFing mums ... what I was told is that they only feed the patient, but since you are feeding them instead of giving formula they feed you. If that makes sense ... but they did have breakie foods in the kitchen on 23B (heart ward) for all parents. ------------- DS (5yrs) and DD (3yrs) |
Posted By: Maya
Date Posted: 26 September 2009 at 9:28pm
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There's a Subway in the hospital now, you just take the walkway across to Akld hospital, there's a Muffin Break too. ------------- Maya Grace (28/02/03)
(02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: tishy
Date Posted: 26 September 2009 at 10:02pm
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Good luck Laurie, I hope the trip is a successful one!
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Posted By: susieq
Date Posted: 27 September 2009 at 12:43pm
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Good luck Laurie,
I too hope the trip is a successful one and wil pray for you ------------- susie |
Posted By: BugTeeny
Date Posted: 27 September 2009 at 1:09pm
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All the best Laurie!
You've done a wonderful job the last 12 or so months. I really hope you can get the answers and get Jackson on the road to a full recovery
Be kind to yourself - let the staff up there pick up the slack a little to give yourself a break
*hugs* Thinking of you
------------- 
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Posted By: WestiesGirl
Date Posted: 28 September 2009 at 12:38am
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Good luck Laurie. I will be thinkning of you. I hope they can give you some answers ------------- Our Angel July 08 Gone but not forgotten
And to complete our family, our princess has arrived 
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