I know it's been a while since I blogged, and I promised a blog about our last hospital stay, so that everyone knows roughly whats going on (for those of you who are interested) and although I am sure no one is particularly interested, I'd like to think there is someone just wondering how it went. Well.....I don't even know where to start!
We were due to be at GOSH on the Wednesday. Because I can't drive, and we have a lot of medical crap things to take, we get hospital transport. This consists of a prius (normally) coming to pick us up, with the driver wearing a suit, and the cars being ridiculously clean and tidy, and then you are going to put a child in their. Well, on the Tuesday I realised I hadn't had the usual call to let me know what time I am being collected, so I decided to make a call. Doesn't that sound simple!?
I phoned GOSH switchboard, and asked to be put through to transport. They put me through, and it rang for ages before someone decided my call was worth answering. I spoke to a lady who said I had come through to the wrong 'department' and they would put me through. So.....I was then on hold to another 'department'. Eventually I got through to a man, and I simply stated that i was being picked up tomorrow, and I just wanted to know what time as no one had phoned me to let me know and I wanted to make sure I was ready. He told me that they didn't confirm bookings, sorry. That was that. So I phoned GOSH switchboard, again, and they put me through to transport, again, where the man told me I had come through to the wrong department and he'd put me through.....I'm sure I've been here!? So, before I had chance to answer I was on hold again. And I got through to the other 'department' who told me the same thing, and went to hang up, and I told them not to hang up, if that was the wrong 'department' they needed to put me through to the right 'department' where I was told they didn't have that facility and hung up. I decided to give it one more time before I phoned the Endocrine time while banging my head against a brick wall. So, once again, I made it through to the switchboard, I asked for transport, and before I even got as far as explaining what I was after, I told the man that I did not want to be 'put through' again, I simply wanted an answer as to what time I was being picked up, otherwise I would not be ready, and I would not rush to get ready, and I may just not get in the car at all. And all of a sudden, he could log onto his computer, find the right page, and tell me, that I will be picked up in time for 10.....so that means I will be picked up about 10ish? No, 10 is when they will drop me at my 'destination'.....so they will pick me up about 630am-7am. I stated to him that next time, it's an idea to RING people to let them know what time they are being collected, especially that early in the morning as there is no way I would have been ready for that time otherwise. Then he started blaming his collegues and I just said it didn't matter who's fault it was, it didn't happen and it should have, and now I know that's fine (well it's not).
So, my plan of take my children to school and collect my medications on the way home from school went right out of the window and I had to do a mad dash to the pharmacy to pick up my medication, and I was beyond glad that I did, because I'm not sure what would have happened without it (including emergency diazepam which I always have for hospital stays). Then I had to hurry up and restock my TPN box, and pack everything for a 2 day stay. Honestly the amount of stuff one small child needs is beyond ridiculous. It looks a little like this:
So, I get up with the kids, get them ready for school, get Rowan up (connected to TPN, and feed) throw some clothes on him. Chaos. The man with the car knocks on the door, he parked in the wrong place, as usual, grumbling about how I really should tell people my front door isn't ACTUALLY in my road when they phone to confirm, to which I bite me tongue as it's 645am, I have about 3 hours to spend in a car with him, and I'm sure moaning about how maybe I would, if I actually got a phonecall confirming in the first place, but I don't. I just ignore him and continue to get ready. So, we haul all the crap stuff to the car, and I leave the 'men' to start packing the boot. The driver asks me if I need the car seat (which i had already said I needed when I phoned up the day before) and I said yes please. He pulls out a booster seat. The kind I would put Katrina on. No back, no nothing, literally, the ones you get for £10 from Tesco your local big supermarket. Now, I wouldn't put Ayden on one of those booster seats personally. But with Rowan, it's not only ILLEGAL, it's downright dangerous. He would be as safe on that as he is just sitting on the seat. So I stroppily said no, and went and got my own car seat (one more thing for me to have in hospital!). Once the car was packed, and we got in the car, the man asks me why I got so stroppy about the car seat.
Ok, so, maybe you think I am a little bit out of order. He is 3 afterall, how would they know? Well, to begin with, a 3 year old, even an average 3 year old, would struggle to be safe on a booster seat like that. I'm not even sure it's legal. But, I get hospital transport ALL the time, and have this problem every time. Everytime the driver ensures me that they will notify the 'office' that Rowan is not an 'average' size 3 year old, and that he needs a 'toddler' car seat. And EVERY time they bring him the same booster seat. I suppose you could say that it's my responsibility to supply the car seat if I'm not happy with their option, and you would be right. Have you ever carried one of those car seats though? I have to carry all that above, with a toddler car seat, and a 3 year old, connected to TPN and feed, from one end of the hospital to the other. On my own. Because it's against health and safety for the driver to help you. Nor will they drive you to the door nearest the ward you are going, because they are not allowed. So....I have to pile it all into the buggy, push the buggy with one hand, and carry Rowan with the other. I COULD in theory ask for a porter to help me, but you have to wait 30 minutes for them to help you. It just isn't worth it. So, I put Rowan in a baby car seat. The same one you bring a newborn baby home from hospital in. If you were ever in any doubt to Rowan's size, this is him in his 'baby' car seat.
He is about 2kg off the maximum weight for the car seat, and he has about 2 inches left in height before he is legally too big for the car seat. Then what? Well by then I will be driving, and I will drive myself. Although this will be a nightmare, and expensive to park, I am fully aware of that, it will also be the only way that I will feel that my son is safe on the journey to GOSH, and we can do it in our own time, stopping for coffee or the toilet. Also, he will have a rear facing car seat. Yes, I am going to rant a bit about car seats. I have HUGE issues with car seats. Why is it, it is seen as a milestone to turn our children to forward facing at 9 months old? Is celebrating the possibility of increasing the risk to our child really something to celebrate? It is proven that a child is at high risk of so many injuries including internal decapitation if in a collision and the child is in a forward facing car seat. Why is it, in some countries the advice is to keep children rear facing until 6, others 4, and yet we are still at 9 months or 20lb? Why? It would appear that we do not care as much as our children. Well, I know how difficult it is to get a rear facing car seat, once they hit the 13kg weight limit of the baby car seat, I have been looking. And the cost is immense. The big companies like Graco and Britax do actually make rear facing car seats for older children, for other countries. Apparently the British do not want them. Did you know they exist? Do you really know the dangers and the risk? Have you seen this video? It is one of hundreds on youtube, showing you the same thing. I know these car seats are expensive, but can you really put a value on your children's lives?? So, when I do drive, Rowan will be having a rear facing car seat. Because of his hypermobility he is at higher risk again. And then counter in all his additional tubes and lines and it is just so much safer. So no, I will not be putting my 80cm 3 year old onto a booster seat!!
So, we arrive at GOSH and I make the journey from the car to the ward and arrive in time for 10am. Just. Really our problems started before we were even booked in. The nurse came looking for us. She walked past us 3 times. You know when you know someone is looking for you, looks at you and thinks 'no' and carries on? Well she did that 3 times. She looked at Rowan, and I could see her thinking 'too small for 3' and carrying on. In the end the play specialist pointed out that this was Rowan. She then checked his date of birth 3 times with me. Like he couldn't possibly be 3. Things just got worse and worse. The ward we were on, is used for all sorts of gastro and endocrine tests. The first thing that always needs doing is weighing and measure. We never weigh Rowan in a morning because he is full of fluid from the TPN and feed overnight so we weigh him at about 2pm. Also, at this point, his TPN was in a KVO. KVO stands for 'Keep Vein Open' basically, his TPN had finished, but as a failsafe, it will run a small amount of TPN over an hour, as 'extra' so that his line doesn't block. I ask the nurse if I can just disconnect his TPN and come back in a minute to weigh him, especially as the weighing room is busy. I get told no. So we stand in the doorway, of a busy room, where children are being weighed, measured, and their blood pressure checked. It was chaos. Rowan was clinging to me, too busy for him. I bite my lip. A place becomes available, and I ask the nurse if she thinks it may be better to wait until the room is less busy as.....I didn't get to finish my sentence because she told me no, it needed doing now, so that we could be shown our bedspace as she had lots of things to do. After I made a comment that she either didn't hear, or refused to acknowledge about how I didn't realise that dependant upon a child's height, weight and blood pressure, depended on whether they qualified for a bedspace, or what kind of bedspace we got, and saying to Rowan maybe it's done on a star rating, so over 10kg gets a 3* bed, where as a child over 15kg gets a 4* bed. The other parent near me was amused anyway. The reason I asked about weighing him when it was quieter was because of what happened next. I started stripping Rowan off, taking his clothes off, a little 5 or 6 year old girl was also being measure at the same time. She started SCREAMING and crying, real tears. My heart sank and I wanted to cry for her. 'Mummy is that what they are going to do to me' she cried, pointing at Rowan. My heart broke for her. The ward that we were on, is usually used for low level stuff, endoscopies, overnight tube changes, blood sugar testing. So even though we are in a hospital, that doesn't mean other children are as used to seeing feeding tubes and lines as we are. Children in hospital are already anxious, and although Rowan is comfortable with his tubes and lines, other children aren't. We qualified for a bedspace. But it clearly wasn't on a rating. Rowan had a bed. A big bed. Not a cot.
I asked for a cot, because we had a risk assessment done at home and it was deemed unsafe for Rowan to have a bed. That is why it took 5 months for us to get a hospital cot, because if a bed was safe, we'd have a bed. The nurse informed me that there were no cots in the hospital (which I know can happen sometimes) and then she told me that Rowan would be OK in a bed, as he was 3 afterall. I asked several times and we never received a cot. This resulted in me being unable to leave Rowan AT ALL as he was unsafe. I took Rowan to the toilet with me, I took him when I went for a shower, I couldn't leave the ward to eat. My nurse kept telling me that we needed to wait for reviews, so Rowan needed to stay on the ward (despite being able to see the shop out of the window).
As I mentioned in a previous post my anxiety about this admission was huge. I did what I could beforehand, talking it through with the right people and coming up with 'alternatives' and coping mechanisms. One of which was walking away. I couldn't walk away! Another was take a break. I couldn't take a break. Go for a walk. Go grab a coffee. Phone someone. Nothing could be done. So I wasn't hugely surprised at my reaction, although the extent to which I lost my temper shocked me, and really shook me up.
Is this what is known as a balanced lunch?
Continuity of care is not always a good thing. The nurse was newly qualified, which was quite blatantly obvious and I'm not knocking new staff at all they need to learn. What shocked me though was that she was new, and thought she knew it all. I have experience with agency staff, and students, as well as newly qualified staff. It seems that because I do everything there is no real responsibility for Rowan, therefore it's good for them to learn, using us. And I'm fine with that. I am usually bombarded with questions from them, and I'm ok with that, afterall that's how they learn! And lets face it, Rowan doesn't exactly follow any book they will have read! We have participated in lots of trainee doctors courses too! This nurse however, argued with me over everything, from how I changed his nappy (yes seriously) to 'shouldn't he be in pants', to trying to tell me how to take blood and administer TPN. It went on and on and on. I did my best not to lose my rag.
We went in for what's known as a 'profile and fast'. Basically they check Rowan's blood sugar regularly for 24 hours (Rowan's was every 2 hours) while he is on a 'normal' regime. And then they 'fast' him so no TPN, no milk, no food, no juice, nothing. And we wait. And see how long it takes him for his blood sugars to crash. I knew this, it wasn't a huge problem. We started the 'profile' part and apart from the nurse irritating me by having to repeatedly stab him because she couldn't get blood out of him, refused my offer of help, and got stressed when he started getting annoyed and starting kicking her. I asked if we were doing the fast straight after the profile and she said no. So when I enquired a little more, because Rowan doesn't have something called 'Hyperinsulinism' (which is what our Endocrine consultant specialises in) he will have a 16 hour overnight fast. Over my DEAD body!!! So I enquired as to how that was going to work, as he needs TPN for calories, and that would mean him missing a WHOLE night of TPN, not only that but he would get dehydrated, his electrolytes would go crazy and they told me that's why we were staying an extra night to get him sorted out again after. Then I asked what they expected me to do? Sit up and wait all night for him to go hypo and then when he does, take blood and connect fluid? They said no they would do that. When we are trained to do TPN we are brainwashed connditioned taught that no one but us accesses Rowan's line, except in certain situations. So there was no way I was prepared to let them access his line for something that I do. So I had resigned myself to no sleep.
Everything is too high still.
The next day the profile finished at 10am. The consultant came round at about 1130am. He looked at Rowan, and then looked at me and said 'why isn't he fasting'. I wanted to cry. So I explained to him what had been said and he told me that just because he doesn't have HI, or a 'label' does NOT mean than he can be treated like a child who went hypo say once, while having a bug which is what the 16 hour fast is used for. He absolutely agreed with me that it was unsafe to do a 16 hour fast. So he spoke to the nurse and we had to do a 6 hour fast, on the day that we were meant to go home. I was hoping to be home mid afternoon, but the test didn't finish until 3pm. It was a long day.
I had issues with the nurse getting me blood bottles to take the bloods the night before the fast. As Rowan's TPN was coming down early (to start the fast) I was told by the consultant to make sure he's TPN went up on time. Rowan's TPN is connected at 630pm. So at 615pm I start to hunt for my nurse to get me the bottles. There are lots of nurses floating around making beds etc, but my nurse is nowhere to be found. So I asked another nurse if she could get me the bottles and I was told 'he's not my patient'. It was like a red flag to a bull. I know full well that if a member of staff has to leave the ward for a prolonged period they 'hand over' their patients. This nurse told me my nurse was on 'lunch' and I would 'have to wait'. It would have taken her 2 minutes to find the forms that were already printed off, and get me the blood bottles, but she refused to. My nurse reappeared at 7pm. I asked her for the blood bottles. 720pm she brings me syringes in a 'non sterile' tray. No blood bottles. I decided to ignore her stupidity ignorance inexperience and use my own syringes (the ones she brought me weren't even the right ones) and my own sterile field, but we argued over blood bottles for 10 minutes. She sheepishly went and got his blood bottles. I was mad. I was very very very mad. At 730pm, I FINALLY got his TPN connected. I put Rowan in the buggy, and I walked off the ward, I needed to calm down. I lost the plot. I, through gritted teeth informed the nurse I was leaving, and didn't even stop. I walked for about 20 minutes, and decided to go to another ward and see someone else who's child was also in hospital. I was there until 1130pm. With Rowan. No one phoned to see where I was, or if we were ok. It just made me feel even more like no one really cared to be honest. Even if they suspected where we had gone, why not just check. It's very late for a 3 year old to be up, and we had already discussed Rowan's strict bedtime routine.
I appeared on the ward at 1130pm and considering at the time the ward is locked, and you need to go through two sets of locked doors, not a SINGLE person came out to ask if everything was ok. I'm not actually sure if we ever had a named nurse at night, as I never saw one. No one came to say 'I'm your nurse tonight' or 'if you need anything just find me' nothing. So I settled Rowan and settled myself down for the night as I was up for 6am starting to wind Rowan off his feed. This entails turning the rate of the milk feed down by 2mls an hour, every 15 minutes, until he ends up on 0mls an hour. It takes a little over 2 hours usually. The fast then began and everything was ok. We got to 5 hours and his blood sugar was hovering. At 5 1/2 hours he was hypo. So the fast stopped, and he needed treating for low blood sugar. I got him all dressed and sorted out to run to the shop to get him crisps, as that what he was demanding. They told me that he couldn't leave the ward until he had eaten as he was hypo. 20 minutes later they bring him something to eat. They didn't check his blood sugar again. I checked it myself. 3.1. I was not happy, he ate his food, and then I tried again to go get him crisps. No, I couldn't leave the ward until they had checked his sugar again. When I enquired when they were going to check his blood sugar again, they said in an hour. I pointed out that he had a Hypo Plan, but they told me he'd be OK as he has not got Hyperinsulinism he would be fine. In all fairness he normally is fine, but they didn't know that. An hour later, they checked his blood sugar and now it's way too high.
Thankfully once the endocrine team were bleeped and they were informed that I was perfectly capable of dealing with Rowan's sugars, too high or too low, and they let us go. We didn't get home until 730pm, but we got home.
I'm sure this was just a one off. I'm sure it was just because we had an inexperienced nurse. I'm sure it felt worse because mentally I was struggling and none of my 'coping' plans could be put in place. 4 days after I came home and I could finally write an objective email outlining the problems I had had, rather than losing my temper and putting lots of comments in that I would have regretted sending later. I sent that email to the Endocrine team, and the Gastro team, and I know that further meetings have been held and hopefully this shouldn't happen again, to me, or to anyone else. I am grateful that my complaints were taken seriously. I also had apologies from both teams, as neither were hugely accessible during our 3 day stay. It should have been simple. It rarely is.
So, lots of lessons were learnt. We know Rowan can ONLY go 5 hours without eating anything, and that is ONLY if I've spent 5 hours beforehand 'winding' everything down. Other than that, its been a steep learning to curve into finding out how 'other' wards handle Rowan and me. I learnt a lot about how I manage situations, and I need to speak to my team. I learnt to appreciate our usual ward just that little bit more. And the team at GOSH learnt a few things too.
Let's hope the next stay will resemble something closer to what I expected.
Rowan's 'I can't reach' face.
He'd had tests for so many different things, and everything was negative. One doctor at Brighton Children's Hospital decided that he would send Cameron to GOSH to see his 'friend'. This friend was our (now) favourite doctor. He took one look at Cameron, and decided he needed an endoscopy. From this we were told he had a rare form of Coeliac's disease (see previous post 'it's only a diet, right?). I remember that day like it was yesterday. The day I thought my whole world had ended. I was 21, and I was still getting used to parenting on my own. I went to see the Dr, and he told me I had to take gluten out of Cameron's diet. What the hell was I going to feed this small child, with bread and pasta and cakes, sausages and burgers, chicken nuggets taken away.
Everyone who decided to turn their back on Cameron as a 'poorly child' or me as a 'young attention seeking mum'....screw you. You missed out on the most AMAZING child. He has taught me so much, he has changed my life, and my outlook on life for the better. I have learnt so many things that I never would have learnt if it wasn't for Cameron, and while some things I'd rather not have learnt, I wouldn't change him one little bit. Cameron may not be the 'perfect child', or a 'picture of health' but he's learnt things about life that some adults are yet to learn. Those who turned their backs on us should be ashamed of themselves, and embarrassed, but I know they won't be, they are living the life they always wanted, selfishly, while I gave up my life for Cameron, I gave up a job I loved, but I loved Cameron more. You don't deserve to be in my son's life. I hope one day, when he wants to come and find you, you kick yourself. And the only person to blame is yourself. 
But for now, I will continue to love Cameron, no matter what, unconditionally, I will continue to support and encourage him in WHATEVER he wants to do, or wants to try, whether I think he can do it or not, I'm not going to be the one who tells him he can't do something. You never know until you try!
