How do you stay strong when your child needs repeated hospital treatment?

[Bravelittleone]

I wonder if anyone is able to help with any advice. I feel like I’m failing as my little one’s mum.
We’ve just got home from our 3rd hospital stay in a month. I know others have it worse.
Yesterday was a bad vein day and he screamed & cried and they still couldn’t get the blood so ended up using his little toes. This took ages and although he likened it to being stapled was not actually too bad albeit took 80 minutes to get enough blood and several attempts.
How do you keep strong? I know everything needs to happen but it’s heartbreaking seeing him go through all of the pain. I did break & cry twice, thankfully behind the curtain so he doesn’t know. He has a big operation early in the new year that the consultant has already said is a tough one recovery wise and will obviously mean more needles, pokes & prods.
Any help gratefully received.

Aw it is so hard my son has had 2 surgeries this year too. Big hugs. What is his surgery for ? It is so difficult and also frustrating when you can't get the information etc. we just went through the motions and tried to tie appointments in with treats,like a McDonald's or a new sticker book etc. he was in hospital around 5 weeks for the operations and that was tough you run on autopilot but you get there. There is always other parents about. Worthwhile getting as much support as you can to help and share the load

That sounds so hard op. I can't imagine the pressure of trying to stay strong..cannot hosp offer you any psychological support? There should be a liaison team who can point you in the right direction of nothing in house.
Wishing your little one and you the best x

You poor thing, and poor little lad. It’s hard, but you just do.

Try not to mull it all over - yes, I know it’s easier said than done, but the more you go over each event the more they stick in your head. The memories don’t go, of course, but in future years, they will just be ‘an event’, not consuming every minute.

You may have to see and hear things you cannot believe you’ll cope with. You can. Strong mama! I say this a lot, but games such as Tetris or solitaire really do help to move those memories to a different part of your brain. It’s a known ‘anti’ PTSD strategy. So, get onto those when you can.

Kids live in the moment, so once a procedure is done, make happy memories together: laugh, distract, more laughing. I cannot emphasise how much laughter truly is the best medicine.

My DD is now 25 and we have ‘our hospital’ memories, they’re mainly laughing memories now. She knows most of what she went through as a baby, and older, but my memories are somewhat more traumatic as, for example, I sat with her through one operation.

You’ve got this.

It's really hard, especially when they have to go through repeated treatments . My son had to have repeated bloods done when he was younger. If they couldn't get a vein after 3 times I always asked for someone else to do it. We had an anaesthetist do it one time who managed first time.

Do they have a play specialist where you are, they are good at times for distracting?

Bribery never worked for my son, but it may do for yours.

It is completely distressing for them, but also for us as parents to see them go through this. You do just keep going somehow. I shed many tears over the years with mine.

Best of luck with it all.

It’s just awful. The only way I got through it is because there’s no other option. But I did feel very bad for a long while after. Watching them have needles and be in pain is so awful.

How old is your son OP? You are definitely not failing as a mother, you’re doing your very best in extraordinary circumstances. Be kind to yourself. This will all soon be a distant memory x

Thank you all so much. Lots of help from you all.
I’ll definitely get on to the Tetris & Solitaire.
My little one is 6 and has kidney disease.
We ended up back at hospital yesterday and will be returning today for more bloods to be taken. Absolutely dreading it whilst putting on a smile and trying to be enthusiastic but he’s upset any time he thinks about it. Trying distraction with anything & everything. He is super brave for the main part but these bloods are dreadful.

Be kind to yourself!

If you can afford it, we always get a little treat after any hospital appointment - even if it's just a little routine check up, usually a magazine. For blood tests, it's a magazine and icecream/sweet. Do they have a children's team at your hospital? When our kids were little (three with different medical conditions, all need regular blood tests and other check ups/admissions), they had a play team that helped distract. Later, I had them on my lap backwards (so head against my chest) and held them tight, either watching something or reading together. We have always preferred the ice/numbing spray over the cream - the anticipation made my kids much worse and it often didn't work as well.

Otherwise for stays, I recommend meal planning, prepping nice and healthy snacks and accepting that it's hard. You do get into somewhat of a routine but it's still tough - and whilst in some ways it gets easier when you can explain better to your kids what's happening, they also start asking questions more and that comes with a whole other level of challenges.

You just have to get through the bloods bit as best you can. I also let my child sleep with me and do whatever she needed for comfort afterwards. It’s just so hard, I really feel for you.

Thank you both.
Treats & bribes are definitely used often. We both now take a blanket from home for snuggles in bed together. Good idea to get organised on the food front, January will be tough as it’s a minimum week stay and will need food that is ambient as will only have a visitor on day 4.

Really painful to even hear this but all that could be said is stay strong and do not give up. It is always better to heal through treatment rather then regretting later in life. You have to be patient and let things work their way.

Yes the food is an issue. I got sooo hungry. But also felt sick with stress. So it was a horrible combination. Do you mean you’ll only have someone coming to visit with you on day 4?

Definitely not a fun combination there @BlackBirdInFlight but that’s exactly it. Unfortunately it won’t be until day 4 that we can get a visitor, we will be 2 hours from home with older child at school.

Oh nightmare. Luckily we were only a half hour drive and older kid wasn’t in school, so it was easier to manage. If I were you, I’d try and stock up on meal deals and ritz crackers or something like that. Plus fruit and yoghurts.

I couldn’t leave my daughter’s bed because she would cry and would wake up any time I left for even a second. So the only time I could get to the kitchen was when someone else was holding her, which made getting hot food and drinks tricky.

Honestly - anti-anxiety meds were a godsend for me when we went through a devastating diagnosis with DS and invasive treatment which ran into the long term.