Getting on the blogs this week aren’t I! It seems to be a recurring theme that I lay low on the blogs whilst it’s all crazy and then as the crazy gets extreme I blunt out the past few months before anything else can happen. It just my life at the moment!
As I ended the last blog telling you, on Monday 16th February Jaxon had his 6am feed and an hour or so later vomited blood. Not a little blood stained milk, not pinkish spit. Free flowing fresh frank blood. Handfuls. I was terrified. The whole weekend he had been throwing up pretty much his entire feeds and I had dreaded the inevitable return to hospital but this was something else. I called 999. An ambulance was with us within 10 minutes. During the ride to hospital he vomited blood again twice.
I think this is the first admission that actually scared me
I’m going to cut a long story short and say he was starved and unmedicated for the entire day. From 3 hours sat in A&E without being seen (what was the point in the ambulance coming so quickly?) to my demands that he needed to be fed ignored and my legit concerns about his medication dismissed to not being on a ward until 11pm that night. Honestly, the worst experience I’ve had with his healthcare (and we’ve had a few hiccups I’ve turned a blind eye to). Watching my baby cry with hunger knowing the all of his conditions and his need for fluids was heartbreaking and infuriating. Nothing was done until 9pm that night (we came in at 8am) when I started shouting crying tears of anger and frustration that he had been neglected with no feeds, no medication and his heart rate ignored at 210bpm all day. Oh, and then let’s add the ten attempts it took to cannulate from four different professionals despite me telling the first doctor he needed a specialist. Obviously there’s a lot more to this but when I tried to write out the complaint it totalled around 2000 words. Neither me or you have time for that so we’ll skip to the part the bleed stopped, they put the bleeding down to his tube causing trauma and he was admitted due to continued vomiting.
From week one of this admission it was established Jaxon needs a gastrostomy (PEG) and a fundoplication. I’ll write another blog on the details on what a PEG is once he has it but for now, it’s a feeding tube into his stomach to replace the one on his face. The fundoplication is a procedure to try to stop Jaxon vomiting. He’s not gaining weight, he’s not getting the nutrients he needs, he’s uncomfortable vomiting anything between 1 and 20 times a day, it is causing his blood results to go haywire and essentially resulting in multiple long hospital stays. The PEG would be a minor operation but the fundoplication makes it a longer procedure. It’s a last resort as he’s been vomiting for months now and we’ve exhausted every other option. He is on the maximum amount of two medications (ranitidine and omeprazole) for gastroesophageal reflux disease (GERD) (usually just known as reflux but as Jaxon has reflux with his kidneys aswell I have to be specific), which is causing the vomiting, and the dietician has tried so many different milks and volumes and played hell with his regime to try to stop it, to no avail. We’re So we’re left with no option.
The reason we’ve been in hospital this whole time is because the only thing that calms his vomiting down (but still hasn’t stopped it), is a continuous feed which means he is attached to a feeding pump 21 hours a day, recieving just 36mls every hour. Constant little drips. Any more and he vomits. The problem with this is that as Jaxon currently has a nasogastric (NG) tube (the one going down his nose) which he regularly (I think 8 times in one day is the current record) pulls out. If he pulls it whilst attached to a feed the fluid could leak into his lungs which is called aspiration and can be deadly. I cannot possibly take him home and watch him 21 hours a day. I mean, I try to act like superwoman but I’m really, really not and in fact there is nothing I need more than sleep. Especially when I’m responsible for medicating him 9 times a day! It was frustrating because from around a month ago, he’s been so well but stuck in hospital. Here’s an attack of photos to show you before we move on to more serious talk 🙂
You would think the operation would be done ASAP due to him taking up a hospital bed. Well it was a little more complex due to that big ol’ heart of his. The cardiologists had already been so against him having an operation unless it was essential because of the risk to his heart. I knew that having agreed to the operation, they would want the surgery done at their cardiac centre, Glenfield hospital in Leicester. This meant Nottingham had to contact Leicester to arrange the surgery but this is where it got a more complex. Glenfield hospital only performs heart surgery. Jaxon needs to be there for the specialist cardiac teams but he is having general surgery. Therefore, a general surgeon from the Leicester Royal Infirmary needed to travel to the Glenfield and they needed to work together. When I met with the surgeon I thought he was fab. I was anxious it came across from Doctors in Nottingham that he was uncertain about doing the fundoplication because of the length of time it would take under anaesthetic with Jaxons heart. But the fundoplication was the whole point in this whole ordeal, to stop him vomiting.
However, after we met and I gave a detailed history and explained how his cardiologist had advised me the length of time was not the issue but instead getting him under anaesthetic was the concern, he was on the same page as everyone else. This meant getting everything done in one go was the best option over multiple different surgeries. Hence why the kidney team had jumped on board and informed me a week or two before that they were going to get involved and perform a circumcision and STING (injections into his ureters to try and stop his urine going back his bladder back up to his kidneys). Both of which were to try and stop or minimise his recurrent kidney infections that were keeping him in hospital. So now his cardiologist needed to arrange a theatre and cardiac anaesthetist at Glenfield hospital, whilst the renal team at Nottingham had to find a urologist in Leicester and some one had to find a time and day that all three groups of specialists were available and a theatre was free. I left freaking out about how much longer we’d be waiting for all of this coordination and spent the week on the phone to everyone. And a week and a half later he’s booked in for the surgery. SHIT.
Why did they agree to the operation if it’s a risk to his heart? Because, without it he is living in hospital which is no quality of life. We’ve already established we don’t know what is going to happen with his heart. It was checked again on the Friday just gone and it was worse again since February. His cardiologist apologised it hadn’t got better but I’d have been more suprised if it had. Initially I believe the right side of the heart muscle was thickened, then the left side, then in between, and now it appears the entire heart is thickened. As discussed in the previous blog posts it is a possibility his heart could take his life. When this was first established I wanted him out and seeing as much of the world as possible, and that still stands. The cardiologist, who I believe is surprised he’s still alive to be honest (literally she looks at him in shock every time she sees him in person after having looked at his heart scans), is on exactly the same page. She did not want him operated on but when it got down to him being stuck in hospital, she was 100% team quality of life.
I may have explained this in a thousand or so words and it may sound like it flows but there were multiple stresses along the way. Jaxon picked up around 6 different bugs whilst sitting in hospital waiting. He had another urine infection whilst we were in (literally lost count at this point). It took 6 weeks or so to get an outpatient appointment in Leicester with the surgeon and despite being told repeatedly that the delay was because they were all ‘in communication’ trying to sort it. When I arrived to see the surgeon he had no idea about the kidney procedures planned on his surgery. We didn’t see the surgeon on the first appointment given because I do not drive and so hospital transport was booked but it didn’t turn up. The longer it took the more anxious I got about his heart because he’s had it scanned every month since the diagnosis, and every month it’s got worse. So waiting two months in my head calculates to a higher risk to his heart, which made me panic. I spent the whole two months watching Jaxon get ill then get better but not be able to go home because of his feed, then get ill again etc. I watched Jaxons weight slowly increase then drop again each time he got a bug making his sickness worse which resulted in a vicious cycle of coming of milk entirely and being on dioralyte (basically water with salts and minerals) for days at a time. I can get over mistakes, delays..things that affect me. But as soon as I see Jaxon suffering I can not deal. It’s been stressful to say the least. this child of mine has knocked decades off my life!
To summarise, if Jaxon was a normal baby he would not be having any of these procedures. The PEG would wait until he was a little older. Without his heart condition there are other medications for the vomiting and also the surgery for the vomiting has a higher failure rate the smaller they are so it is beneficial to wait. The renal team would have left his kidneys alone a little longer until they were bigger. However, Jaxons heart is the main reason for the operation and also the main reason the operation is a concern. Jaxon cannot have the other medication for the vomiting because it can cause arrhythmias (irregular heartbeat) which his heart could not handle. Jaxons heart is at risk every time he gets an infection as fighting it makes his heart work harder when it is already under so much strain. The longer we leave these operations, the higher risk the anaesthetic may be on his heart because it appears to be getting progressively worse.
- PEG: making tube feeding more manageable meaning we can spend more time focus on oral feeding, safe overnight feeds, get us home, we all get his face back, he doesn’t keep pulling the NG out – I don’t have to keep passing tubes down his nose.
- FUNDOPLICATION: stop vomiting/reflux, maybe come off reflux medication (??I just made this one up, hmmmm, I wonder!), end of vomiting means weight gain and stable bloods!
- STING & CIRCUMCISION: help prevent urine infections meaning less hospital admissions, less hospital admissions mean less prodding and poking, improve weight gain from improved feeding (infections make him more sick)
Ultimately all of these things aim to keep Jaxon out of hospital to enjoy as close to a normal life as he can which should in turn help his development (hospital babies are known to develop slower and also constantly being ill prevents ability to thrive).
PRAY FOR THE PLAN PLEASE!
There are huge risks associated with this operation and his heart. We’re quite literally risking it all in hope for a better life. But what is the alternative? A life time in hospital? What kind of life is that for him in those four walls? When I think of the risk I think those four walls aren’t bad but really? What choice do we have at this point? His life is at risk every day with his heart. Lord Jesus, if anything goes wrong I’ll never forgive myself.
If you’ve made it this far – thank you for reading!
Please do comment your thoughts and feedback, I’m always interested to hear how my blogs come across to readers. Let me know how you came across my blog, how it made you feel, if you can relate or know somebody it might help – anything and everything!
Also DO share! You never know who on your social media could benefit from finding out they’re not alone ❤
For Jaxons history in order read:
1. Pregnancy was not a breeze..
2.My first week as a mother was not what I expected it to be
3.Went to hospital with a 6 day old, left with a nearly 2 month old. Why..
4.I just heard the words no new mother should ever hear..
5.Digesting the threat and.. hello bronchitis
6.Diagnosis and mixed emotions
7.Going home with a heavy heart
8.“Why does Jaxon have a tube down his nose?”
9.Two weeks out: In hospital I’m just his Mum
10.Great Ormond Street: Round 1
11.Two weeks in hospital: Swapping to a neurodisability lead consultant & what is parallel planning?
Gosh I could write a book!