Updated: May 3, 2020
In four years we’ve had around 50 hospital admissions with Lydia. 35ish of them in intensive care and it never gets easier emotionally. The first few hospital admissions were CHAOS, not only were we getting our heads around Lydia’s condition, we were getting to know her and her red flags. One medical change impacted on another, the teams weren’t talking to one another and we were being dragged from one end to another with zero communication and they only thing that was happening was Lydia was health falling through the cracks. We were juggling who was going to stay at home and in hospital, Dave’s full time job, Caitlin being in school. It was a nightmare. I wasn’t organised, I wasn’t prepared, I was burnt out, emotionally, physically, emotionally and mentally. If I had taken some time out to organise myself I think it would have been a lot easier all around not just for Lydia but the whole family.
Here is what I’ve learnt over the years so you don’t follow the same mistakes.
Work out whose is going to stay when and stick to it, arrange child care for siblings. Caitlin usually gets collected from school by my mum for the first day or two just so we can concentrate on Lydia and see where her care is going. It ensures Caitlin isn’t subjected to more hospital than is necessary. This works well for us as a family and Caitlin and my mum get to spend quality time together, which they both love.
Pack appropriately. I have a list for 3 day admission, a week admission and a month admission.
BUY A SUITCASE and a holdall!! I’ve only done this in the last year and in fact I bought two, what a game changer! I was given some birthday money and decided to invest in making my life easier. I do not regret this AT ALL!! It has revolutionised our hospital admissions as everything is in one place (or two suitcases) I’m not breaking my back and doing a thousand trips back and forth to the van! I can push Lydia’s wheelchair and roll the case along side! It makes life so much easier!
FOR A THREE DAY ADMISSION: Pack the holdall.
2 x underwear and socks
1 x spare pair of trousers (in case of accidents/vomiting, that happen A LOT in hospital)
Baggy and comfy clothes are essential – I always try and buy tumble drier friendly clothes now and limit them to “hospital clothes” so I can boil wash them when we get home, they get tumble dried and put back in the hospital bag!
My ADVOCATES AND ANGELS FOLDER!! – After every admission I update the folder and send a copy to the team. Keep a daily log in your folder and what is happening and who has said what. To make your own personalise folder FOR FREE CLICK HERE!
A mug with a lid on – I am a known coffee addict! Especially in hospital and most paediatric wards won’t allow hot drinks and if they do, its only ones in insulated mugs WITH LIDS ON!
I also use a reusable water bottle, soft drinks are one of the most expensive things to buy and keep buying whilst your child is unwell. Most wards will offer water, some will offer squash if you are very fortunate but it usually isn’t very nice, very weak and cheap. So I take a reusable bottle and take squash in if I can. STAYING HYDRATED will help you focus, will keep you alert, will make you less lethargic. It’s so important.
A phone charger, I have bought a 3m cable from apple so my phone can be reached whilst charging. I highly recommend this 3m multi charger.
Snacks, you won’t believe how draining it is sitting next to a bed for a few days, its important to keep your energy levels up.
Lydia needs extra pillows, I have a U pillow and a V Pillow which helps position her for sleeping and sitting in the day as extension is a real issue she deals with and it only gets worse when she’s unwell. Lydia’s blankets.
Lydia’s medications and feed.
Lydia’s clothes, main pyjamas and loose fitting tops.
A wash bag, you can see my wash bag and what’s inside it here.
Cash, I have a small wallet with a £10 note and 5 to 8 £1 coins just in case I forget my bag or purse.
FOR A WEEKS ADMISSION – PACK THE ABOVE PLUS…
Extra t shirts, underwear, trousers and pyjamas.
By this point I usually bring the ipad for Lydia. She has a huge obsession with Peter Rabbit and Tangled and I pack her noise cancelling head phones, especially if she’s in HDU (high dependency) with crying babies. She hates that. So watching a film calms her down.
I try and pack a few bits for Caitlin so she has something to do when she’s in hospital. LEGO is my friend in this situation. It keeps Caitlin busy but I can also take it home and stick it in the dishwasher or sterilise it which I love! I also like to get Caitlin sticker books, a reading book, a jigsaw, dot to dots books and a tonne of snacks.
FOR A MONTHS ADMISSION/TRANSFER OR PICU
I’ve usually packed BOTH suitcases and holdalls with all of the above PLUS…
Extra blankets, PICU don’t allow clothes so cute blankets to cheer the bed space up are nice.
Most PICU wards don’t allow outer wear, coats or bags etc. So make sure you have clothing with pockets for your valuables.
Musical toys for Lydia to keep her from getting anxious, you won’t be able to sleep in intensive care so I always pack, violet or her musical bear from friends. The music is so soothing.
Is there anything I could add to my list or pack?