Wednesday, 15 July 2015

Single Parenting and Hospital Admissions.

I realised a few days ago, that no one really understands the logistics of what happens with Katrina, Cameron and Ayden when Rowan needs to go to hospital, whether that's the local hospital, or GOSH. You would assume they'd go to family or friends, I mean that's what happens with most siblings isn't it? My situation is a little different however.

Due to circumstances I don't have family who are able to help out, either through work commitments or logistics, and actually the vast majority of family would not offer anyway, due to them just not being part of our lives. The 'other' side of the children's family either don't know my children, have never met them, or are not allowed contact with them, which has been decided by a court. This only leaves friends. I don't have many friends, in fact, when it comes to needing someone to help out with the kids the list is pretty much non existent.

So what happens with the kids? Depending on which hospital Rowan happens to be in, and what days of the week it is. If it's certain days of the week, I have one friend who helps out, whether it's sitting with Rowan, or looking after the other kids, or running to the shops, or whatever will be helpful. If it's the other days of the week, I am alone. It's hard. Very hard. 

If he is in the local hospital, my routine looks a little bit like this:

6am Get up get the kids ready for school, including putting dinner in the slow cooker, hoovering, dealing with the dogs, tidying up, putting a load of washing on, putting the dishwasher on.
815am Take the kids to school
830am Go to visit Rowan, trying to get there for 9am and wait for ward round
9am-3pm deal with doctors/nurses/Rowan, getting him up and dressed and washed, and fed, and entertained, medicines done, out for ward leave, IV to do, checking his temperature, cuddling him, comforting him, popping to the shop to top up supplies, dealing with blood tests and other tests, as well as a constant influx of calls, texts, and emails about everything, and yet nothing all at the same time!
3pm leave the hospital to go pick the kids up from school
430pm arrive back at the hospital after picking all the children up, nipping home to collect ipods/tablets/toys/dvds and anything else Rowan has requested.
430pm-6pm entertaining all the kids in a very small space, getting homework done with them, and reading, games, watching TV, more meds, more doctors and nurses to deal with, emptying drainage bags, getting Rowan's Pjs on, teeth brushed, sorting out what needs to go home, and what needs to stay, tidying up his cubicle.
6pm-730pm I.V.s and TPN connection to happen, getting Rowan into bed, and settled for the night, leave him crying because he wants to come home.
730pm head home with the older 3 kids, now grumpy and tired!!
8pm- Arrive home dish up dinner, to find I forgot to buy potatoes/chips/rice/cheese etc. Hunt in the cupboard to find something to substitute! While getting the kids to feed the dogs, tidy their rooms up, find their stuff for tomorrow.
830pm Kids eat dinner, put their Pjs on, and go to bed, then I eat (or not, which is more likely).
9pm Spend time playing with the dogs, topping up their water bowls, fold the washing out the tumble dryer, put the wet washing in the dryer, put dirty washing in the washing machine. Unload and then reload the dishwasher, clear up after dinner, sort out whatever Rowan sent home or requested for the next day. Catch up on emails and messages on the answerphone, write a few emails, open the post.
1030pm Call the hospital to see how Rowan is.
11pm Go to bed, but now I can't sleep.
12am, the hospital rings, Rowan's TPN pump won't stop beeping and I have to talk them through step by step how to shut it up and get it running again after they have done his I.V.s
1230am, try and sleep.

It's absolute chaos as you can see, trying to run a house and feed the kids, and keep them all at the things they need to be at. This is a normal day, on a Wednesday or a Thursday, it's even more complicated as it's Guides/Beavers/Cubs. But it needs to be done. The dogs don't get walked, I don't get to go for a run, I don't get to clean the bathroom/toilet/mop/dust, I don't get to go food shopping. It's lonely, and isolating, stressful and exhausting! The few times I have asked people to help me out, I have either been told no, or people are busy, that they find it hard to see Rowan poorly, or something else. I understand people have lives to lead, and sometimes I get really upset that no one will give me a hand. I may appear that I have it under control, but I am often falling apart. I often go all day without having eaten anything, because I just can't get away. When Rowan is really poorly I don't even get to the parents room to make a coffee as he just wants to be with me all the time. Sometimes I physically can't eat, the emotional drain of it all, and the worry of him being poorly, he never has to stay for something 'simple' as I can do so much of his care myself, so when he is in hospital, it's serious, and having to leave my 6 year old in hospital all on his own every single night, hurts in ways I can't explain. Would you leave your 6 year old alone in hospital overnight, I mean it's not like a sleepover is it? He's there because he is very poorly, and the time your child needs you is when they are poorly and I just can't be there with him, because of the circumstances. How would that make you feel? What would you do?

If Rowan is in GOSH the whole thing is completely different. Due to having no one around to help out, after several years of constant fighting and arguing and failed placements and complete nightmares, and me having to sort childcare out mid admission because whoever has the kids can't/won't have them any more, the social worker at GOSH said enough was enough and she intervened after I literally had a breakdown mid-admission with the stress of it all. My older children now go into foster care while I am at GOSH. I usually have to fight for it for each admission, and it has to go to panel, and there is a whole process to go through and usually requires a lot of input from other professionals to justify the hospital admission. I didn't want this for them, but I have no choice. Usually they get to meet the foster carers before they go into care, see where they will be staying, get to see who else lives in the house, any pets, choose their bed (for the boys), ask any questions they have, I can talk to the carers about the best way to manage the kids, and feed them etc. Then when they are in foster care they can ring/call/facetime (the brilliance of apple products and wifi!) me as much or as little as they want. The placement is stable, it's not going to fall through, and while it's usually a little more complicated than that, arranging time to see them, and spend time with them during the placement etc. I'm not going to find myself with nowhere for the children to sleep or stay. So for this particular admission we had weekend leave, so I picked all my kids up from school on Friday, Saturday we nipped to the shop, and did a bbq and did marshmallows and smores, and ice creams, the kids had a water fight, and watched a film (or went to bed early in Rowan's case) and had them until Sunday evening, when I returned them to their foster carers and return to GOSH ready for the second week.

When I say my kids are going into foster care, it's always assumed it's a bad thing, or a negative thing, or that something has happened, or that I have done something wrong. It's not like that, and I wish they would call it something else rather than foster care, respite care, or something. It's pretty rare to be in the situation I am in, and therefore lots of the protocols we have to go through are exactly the same as when they remove children from parents and that's hard to stomach sometimes. Then it's a case of making sure the forms are filled out in a way that reflects the situation, as they just don't work otherwise. For example, I usually I get letters a few weeks after I have got home again with dates and times for medicals, which is standard practice when a child is put into care, and I have to ring up and cancel them, because my kids are back at home, and they don't need medicals anyway. There needs to be more awareness and different processes to go through in this situation, however unusual or rare it is, it still happens!! It's hard enough having to leave your children with strangers, even though you know they have been through rigorous processes, without leaving them with a big 'LOOKED AFTER CHILDREN' form, that makes you feel inadequate as a parent.

So as I type, Katrina is with one foster carer, and the boys are with another, and I am at GOSH with Rowan. It works, in as much as the kids all get a break from each other, and they are in a stable environment continuing with their routine and going to school etc. It's hard for them emotionally to be split up, and not at home, and not with the dogs, nor in their own beds. I would love to say it gets easier each time, but it doesn't. This is one of those things that happens when there is a practically non-existent support network. We get through it, but it's not one of my favourite things that's for sure, and it usually ends up with me making myself ill! That and the kids are all over the place emotionally, one has meltdowns, one cries all the time, and the other gets super hyperactive!

I guess the point of this post was to give you all a little insight into how absolutely chaotic life can be with a child who needs frequent medical attention and hospital stays. Especially as a single parent. Especially with a minimal support network. My advice to you would be, if you know someone in a similar situation, don't assume they have it under control. Just because it happens regularly, does not mean it's easy, or organised. Offer to help, whether it's school runs, bringing dinner, bit of childcare, visiting the hospital, bringing lunch, magazines or coffee, offering to walk the dog, or have the kids for a sleepover. I can tell you now, someone in the situation I am in, would be more grateful than you can ever imagine. That person would also often be the first one to offer you help if you were in need of it. Friendship is a two way street, sometimes it's hard for people to ask for help, and there are only so many times they are willing to ask and be told no before they start believing no one cares. Don't just say you care, when there is a crisis and help is needed, show that you care.

Friday, 3 July 2015

The Plan is......No Plan

So as you all know the clinical error occurred (check out Clinical Error).  Since then we have really been trying to adjust, dealing with a few line infections, and waiting for more tests so we could move forwards.

In January we went into GOSH for 3 weeks for various testing.  Some were routine, and some were meant to be diagnostic.  I won't go into the tests themselves, but the main one was a nuclear transit study, he was only the 3rd to have that one,  It was pretty traumatic, he ended up on ketamine for pain relief, but we got the test done.  This test involved a number of scans, every day for 5 days, watching a very special dye go through the system (it's not the same as other dye type tests although I don't know why).  After a couple of days the dye wasn't moving, I didn't think anything of it to be honest, and carried on, by day 4 it still hadn't moved, so I asked the guy doing the scan, and he said it did seem to be stuck.  Uh oh.  We were meant to be going home for the weekend on the Friday, after the scan, however the scan revealed all the radioactive dye was still inside him.  Stuck.  We had to have a weekend of laxatives to get all the dye out, thankfully it worked (there was a little bit left but they let go) and we moved on to the next tests.  I was really hopeful this would lead us to a diagnosis and a plan, it was an abnormality, something we probably would have seen in manometries if they had been successful!
Just a picture of Rowan,
because he's worth it!

I had a few chats with a few doctors before we came home, and it seemed like an ileostomy was going to be the way forwards.  (an ileostomy is a stoma, that brings his ileum to the skin, and then a bag is attached on the outside, and basically his 'waste' goes into the bag, rather than him doing a number 2 on the toilet) I spoke with his consultants, I tried to get my head around it, I googled, I asked friends who had ileostomies, I spoke to nurses.  I complied a list of questions, I asked about the process, the positives, the plan afterwards.  It looked as though once the ileostomy was in and healed, we would go back to gosh to try feeding him again, and then increase the feeds and reduce the TPN and we could go back to pre-clinical error state.  For the first time in a really long time, something inside me had hope.  Hope that he would be able to go swimming, be off TPN during the day, be able to eat whatever he wants, whenever he wants, gain weight be strong again.  I could see a little bit of the future, and if you'd asked me 3 years ago, if I was happy with the way things were with Rowan, I would have said no, but now, I would do anything to go back to that.

So, at the end of April, I drove down to GOSH for a meeting with the motility team and his usual TPN team.  The purpose was to discuss the plan (aka ileostomy).  I phoned the CNS the day before and clarified that's what we were there to talk about and she said yes, and that the problem they found in January, no one had said would 'fix itself' and therefore everyone was on the understanding this was the way forwards.  I know it sounds silly, to phone the day before and ask about the content of the appointment, as surely that's what the appointment is for, but I don't manage things very well when unexpected things happen, no one does really, but I really really don't manage it well.  So I drove down to GOSH, finding that part of me that I needed to be Rowan's advocate and ask questions, and have the confidence to air my opinions if they differed.

First off, the first thing we do is height and weight.  He had lost weight, quite a lot of weight in fact.  Bugger.  So the appointment started off with his usual team, tweaking his calories, adjusting the rates and volumes, adding in more of the things his bloods said were lacking, had a look at his medications, nothing remarkable, just a typical nutritional appointment for us.  Then it was time for the motility consultant to talk.  He started explaining to me what they found in January, that the left side of his colon doesn't seem to work.  (I already knew that).  That's why we have so many issues with constipation (I knew this too).  So then his usual consultant said 'so the plan will be an ileostomy' to which the motility consultant said 'no'.

No.  No?  No.  No?  No.  Huh?  The room was silent, the atmosphere could be cut with a knife.  Blindsided, shit.  His consultant turned to the motility consultant and just said 'why?'  I could tell she was as shocked as I was, if not more so!  He explained that the finding, while significant, was insignificant.  While it's an issue, and previously would explain some of his issues (pre clinical error) it's currently not causing an issue as such.  I think I must have had that 'what the heck' face on, and I just couldn't talk.  So he tried explaining it to me 'if we get Rowan feeding, IF, then this will become a problem and he may then need an ileostomy, however, if we put an ileostomy in now, it won't make any difference to his current feeding situation, therefore it's unethical to put him through surgery, when there is no benefit'.  I understood.  But I was still confused.  So basically, we needed to get him to feed.  Why can't he feed?  Why can't he eat?  Why can't he have milk feeds into his jejunum (small bowel)?  Why?

'The clinical error probably did something, to something, we just don't know what either of those somethings are'.  Oh.  Shock again.  Ok so more tests right?  More tests that we run to find out what those somethings are? No.  They had a bit of a conversation amongst themselves, trying to work out the plan, if there had been any tests that they could do that we haven't already done, that weren't potentially too risky considering the clinical error, and the answer was no.  Everything they have done shows the problems we have when he feeds (along with videos I have sent them), however they just don't know why, what, or how.  Completely undiagnosed once again, a complete mystery.

The plan was NO PLAN.  The plan was 'go home and have fun'.  Accept that Rowan is on TPN long term, that at the moment we can't feed him, this is it for us for the foreseeable.

I kind of went into shock for a couple of days, literally.  I couldn't talk about it, couldn't process, and certainly couldn't accept it.  TPN was meant to be short term, temporary, we were nearly off of it, now we're 100% reliant on it.  This was not what was supposed to happen!  I went through a whole grieving process I think over the next few weeks.  I had to accept a lot of things, that I hadn't been willing to accept before.  Adjust to this being our life, and not just a phase.  Then I had to start telling the professionals.  This no longer had an 'end date' that I needed to get to, before everything would be 'normal' again, and they needed to be aware of that, and look at long term, rather than 'in the interim period'.  This then meant a lot more meetings, a previous consideration of reducing Rowan's respite hours was thrown out the window (sharpishly) and he was re-awarded the same as he already had (phew).  School plans have been considered, and we're trying to get him on a different timetable to access more of the curriculum, as he isn't coping for more than a couple of hours.  Physio and OT and I had discussions around ways to help him be independent, while being dependent.  My life was once again turned upside down.

But it's worth it, it may not be the life I wanted, it may not be the life he deserves, it may not be the life he would have had, or should have had, but it is his life.  And no matter which cards he has been dealt, he will end up with a royal flush, and a big confident smile.  His cards will mean he is a winner every time.  I will make sure of it!