So we’re reaching 4 months in hospital. Yes, I sighed as I wrote that. It’s been eventful, it’s been scary, it’s been frustrating, it’s drraagged. It sounds like a ride at Alton Towers right? You know, the one you think you’re going to die on. On the bright side, Jaxon has progressed so much in this short period of time which is actually half of his lifetime. He’s grown, he’s got stronger, he’s learnt new things, he’s had more diagnosis, he’s overcome a life-threatening operation, he’s come out the other end stronger than ever. He amazes me!
So what’s keeping him in?
After the operation we had a few weeks adjusting to the PEG feed (the tube in his stomach). Because he didn’t have the operation he needed to stop him vomiting, a plan was needed to get him home. The devil works hard in our life you know! It was frustrating because as I’m sure you read in my previous blogs, his main issue was vomiting and we essentially risked his life with an operation just to stop the vomiting so we could get him home. It sounds absurd when written like that but the reality is his vomiting was so severe. He was not gaining weight, his bloods were abnormal from losing potassium and sodium which often get life-threateningly low and it was awful to watch him retching, gagging and vomiting every ml that went in, all day every day. However, as explained in Post OP thoughts: What the hell happened? , the procedure could not be done. So post op we were back at square one. He was exhausted. Think about when you’re ill and you can’t eat, how low in energy you feel. Then think about when you’re so ill you’re sick and how weak it makes you feel. Imagine him like that 247, not getting sleep because he’s vomiting, not getting nutrition because he’s vomiting and being drained from the physical effort of vomiting.
The original idea was that he would have a fundoplication which would stop his vomiting and we would be able to increase his feeds, get him back to bolus feeds throughout the day and get that weight piling on aswel as encouraging oral feeding. I was so excited to have a fat baby! Instead, we ended up in the same predicament of Jaxon throwing up if given any more than 36mls very slowly over an hour. Therefore to get in the calories he needs, he needed to be on a feed for 21 hours a day via a pump which delivered the milk slowly through the hour. So we did that and gave him 3 one hour breaks timed at meal times to eventually encourage oral feeding. We weren’t there yet but we were building a base to plan ahead. Hopeful as always. These breaks were at 08.00-09.00, 12.30-13.30 and 17.00-18.00. The days worked really well. Obviously not ideal but it worked for him. However, come his overnight feed which was 18.00-08.00, he was vomiting 02.00-06.00. It was exhausting and saddening. I felt defeated, deflated and drained. Were we ever going to get out of hospital? I suggested a break in his feed between 23.00 and 00.00 as it already appeared from the volume limits, to be that he struggled absorbing the milk. He was doing so well during the day and the breaks were the only difference. It kind of worked. It moved his vomiting to 05.00. So another break was put in 5.00-6.00. It worked. No vomits. But mixed with his medication timetable I was faced with a plan from hell to do alone at home. In hospital the nurses do shifts, they take breaks and they still find themselves always doing something for Jaxon. At home it would be little old me 247, 365.
So we had a few weeks of no vomiting and Jaxon doing really well. See the slideshow below. We had an almost normal! We went out with friends and family, went to the park, for meals, home shopping at IKEA and we had no vomits!
Unfortunately he still wasn’t putting on weight and so Duocal was slowly added to his feed to add calories and fat.
We had another Discharge Planning Meeting which I discussed in: What is a Discharge Planning Meeting and how did Jaxons go?. I wasn’t very happy with the outcome. Whilst Jaxons nurse openly said “mum is very competent but Jaxon has a lot of needs and so some support at home is required” and the community nurse said we’ll put in for a Continuing Care Plan to request a Care Package at home, it felt like my voice was the only reason we weren’t being discharged. If I’d said I’m happy to take him home, I’m pretty sure we’d have been sent on our way. Now I sound like I don’t want him home, I do! But I didn’t say so because as far as I was concerned, in my opinion more so as a nurse than his mum, it was an unsafe discharge. Me, Jaxons sole carer, getting 4 hours sleep a night (if I was lucky) and then being responsible for almost hourly medical needs such as pump change, flushes and medication 19 hours a day. On top of attending appointments 3-4 times a week and doing physiotherapy exercises to strengthen Jaxons core plus feeding exercises to encourage oral feeding. Then normal motherly duties of bath time, playtime, story time, looking after myself with basics such as showering and cooking, then looking after our home with cleaning and laundry. That plan didn’t even include making up the milk or drawing up the medication. I am only human. I try to be superwoman but I am not her. I mean, I kind of am, but not 100%. I’ve got like, ‘superwoman tendencies’ shall we say? My concern was not even doing these activities, it was the impact it would have on 1. Jaxons care and 2. my mental health. There’s a reason nurses get breaks and don’t work 247. Theres a reason nobody works 247. Jaxons medical needs are a job on top of mothering. And we all no motherhood is tough alone. I trained to be a nurse and I wouldn’t be allowed to do this at work, its not human, or safe. All it takes it 3-4 weeks of this plan and I give him the wrong medication dosage. Or I sleep through his mattress alarm which goes off if he stops breathing, and thats it. Thats his life. Am I about to risk my sons life to pretend I’m superhuman, no. Hell, no. For who please??
So we’ve established that Jaxon is well enough to go home but his care plan is too much. Therefore a care package at home is needed to maintain safe care in the community right? Well, yes. But, actually no. The requirements for care at home are black and white tick boxes. And Jaxon does not qualify. That’s right. My 9 month old baby with multiple rare conditions plus a life-threatening heart condition, with five medications given at 6 different times a day, fed through a tube in his stomach with one parent at home, does not qualify for support at home. Forget the impact exhaustion could have on his mother and consequently his care. I know some mums will read this thinking “well my little one doesn’t sleep”, don’t. Just don’t lol. Imagine your scenario plus meds, 21 hours feeding a day an the psychological weight of having signed ‘what if’ documents to plan how you would like your child to pass away. Forget the fact he may die any day and therefore every day needs to be as fulfilled as possible. Forget the fact he has a mattress alarm incase he stops breathing because he’s at high risk of cardiac arrest. Forget the fact he’s attached to a feeding pump 19 hours a day. Forget the fact he has an end of life nurse which has to tell you something. Forget the fact his mum is your main source of information regarding Jaxon and you’re going to break her. Forget the fact when he vomits he doesn’t have the strength or understanding to act appropriately and therefore is at high risk of choking on his vomit in the night, or anytime because he doesn’t sit up. He does not qualify. (If you want me to elaborate on the process of applying for additional care and why he doesn’t qualify, let me know and I will).
There we have it. Our catch 22. Jaxon either stays in hospital despite us having risked his life with an operation to get him out so he can have a good quality of life because we don’t know how long he’ll be with us. Or Jaxons goes home to no quality of life because his mother is his sole carer, exhausted from his basic needs and therefore unable to actually enjoy life outside of hospital because he doesn’t qualify for the required support at home. It’s a lose lose situation.
I know many parents face these challenges in the special needs and medically complex community but its wrong. I know many of them back down and just deal with it because as they will say, they love their child and they have to. I refuse to back down. I refuse to accept this scenario. I refuse to say its okay. That doesn’t mean I’m not worn down. That doesn’t mean I don’t “love” my child as much as they do. It means I know what my child deserves. When I took him home last weekend I was ready to give in and just say f*ck it I’m taking him home, I’ll deal with it. But he started vomiting ridiculous amounts again and his potassium dropped dangerously low putting him back on a heart monitor so he’s no longer fit for discharge again. Maybe that was a sign, maybe that was telling me “no Kaytee, do not give up”. This isn’t about me, this is about being able to provide the best for my child. We can do everything for our children because the love is unreal. We will survive sleep deprived. I probably would wake to his alarm no matter how deep a sleep I’m in. I probably would never make a mistake with his medication. But I’m not risking it. I’m not willing to give him any less of me than the best of me. He deserves care at home so that he can enjoy playtime with him mother and not just have her as his nurse all day everyday. He deserves all of my energy spent making him happy.
It really saddens me that I’m having to fight for this. Don’t get me wrong I’m not alone, there are healthcare professionals on my side and there is support around me telling me to keep pushing and not give in. But why do I have to fight? I’ve been fighting a battle for 9 months whether it be his care, his medical needs, my own mental health. I’ve been grieving for a life I expected that I haven’t got. I’ve been grieving the health of my baby. I’ve been overcoming hurdles and accepting diagnosis after diagnosis left, right and centre. Why am I having to fight for my childs’ care at home?
I do adult nursing. I know holistic care. I know quality of life. I know a safe discharge. I’m educated and confident. Nobody can tell me this is okay. If my child lost his life tomorrow I would be furious at the amount of time wasted in hospital. And whilst its all about funding, its ridiculously mistaken because he costs a fortune to keep in hospital in comparison to providing a day or two of care at home in the community. Ultimately, all I’m asking is to be able to take my baby home to a safe environment.
Thanks for reading. I’d love to know your thoughts and opinions on this, so feel free to comment below or private message me on any social media (all of them are linked at the top of this page, just click the symbol). As always, you are welcome to share with your family and friends on social media, who knows who this could benefit not everyones talking about their childs health problems like me.