Starship - What do I need to know?

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?

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.

Edited by Kellie

Laurie

I will miss you! When are you going?

And thank goodness they are finally listening to you!

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 

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

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

so glad too that someone is finally taking Jackson's feeding issues seriously. Hope the stay goes well

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!

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.

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