As I sit at my sons bedside in Leicesters Glenfield Hospital as he sleeps peacefully, I’m overwhelmed with Deja Vu. However, its been two months since the operation that failed us, twice now. I don’t have time to recap as there’s a few bits during the interim I want to update you on, before returning to the current situation.
If you weren’t around two months ago, check out Two months in hospital: the low down on the upcoming operation and my babys big heart., Pre-Op thoughts 💭 and Post OP thoughts: What the hell happened? in that order. They explain why we were here before, the risk and the fear that put in me, plus the outcome which was bittersweet.
So whats happened since April? This is Jaxon, so a lot. Let me just scroll through my camera roll to remind myself..
Continuing Care Application
Right, many of you were eager to know this as you heard me ranting, rambling and falling apart on my Instagram stories. After everything was telling me we wouldn’t qualify for care and I felt like a bad mum telling them I couldn’t cope with his absolutely soul draining 24/7 feed and medication plan alone at home, I got a call. Despite the application submitted not meeting the criteria stated to be required for a full assessment to be granted, someone called and said they’d like to meet his healthcare professionals in hospital to do an assessment. They’d already spoken to his Dietician and they could do 2 o’clock next Wednesday. I was sooo surprised. In fairness, we had piled on a heap of supporting evidence pleading for their understanding but everyone had believed we wouldn’t get help so strongly I’d already built up my attack for an appeal.
I took the reigns on this one. She said she wanted all his healthcare professional, she got ALL of his healthcare professionals. These people had heard me for the past how many weeks and they were coming to fight my corner.
It turns out we didn’t need to fight. The lady that came was lovely. There were around ten professionals around the table. What this mean was that each question, I didn’t have to think and pull at straws to answer. Specialists were there to fully inform the assessor on their area of expertise. For example on eating and drinking, the dietician had her 20 millions previous plans that had tried and failed which led to this one. She also informed on his slow weight gain and his unpredictability as well as how quickly he can suddenly build up an intolerance to something that’s been working really well for a day or two. Even down to emotional and psychological concerns which we had previously brushed over thinking ‘he’s a baby’. In this section the occupational therapist advised when he is unwell (which everyone advised was the majority of the time) he doesn’t enjoy playtime and is very clearly unhappy, which actually meant something in the assessment. It was lots of different things which all clubbed together added up and everybody’s input was invaluable. By the end of the meeting the assessor told me there and then we qualified for help. Everything scored ‘high’ or ‘severe’ on the assessment. I was unexpectedly overwhelmed. My concerns were justified and reasonable. So much so that the assessor granted us a minimum of 3 nights and 4 hours on 4 days. That’s over 40 hours. And she said this was a minimum because people can be overwhelmed by carers in the home. The fight was over. I wasn’t crazy expecting too much. I wasn’t lazy and a bad mum. Jaxon needed, deserved and was entitled to this. The waves of relief hit me. A weight was lifted off my shoulders.
But now, we had to get him out of hospital…
Operation gone wrong
A few week ago, around the time of this meeting, Jaxons privates showed signs that his circumcision had gone wrong. There was foreskin and it was trapping his urine in his penis. It was causing him pain to pass urine. This was another weekend of pulling my hair out. I can handle most medical problems, except ones that cause Jaxon pain. Despite his list of diagnosis, non cause him pain. This was. Every single time he cried I opened his nappy to him passing urine. Originally the surgeons came on a Friday and after doing a bladder scan essentially said they weren’t concerned because he was emptying his bladder. I argued that he was in pain and that was a concern. They prescribed a steroid cream and some numbing gel. It did nothing. Saturday I asked for a review and no one came. The same Sunday. Then it was bank holiday Monday, someone came but they said the same thing. Thursday a surgeon came and still argued his bladder was emptying but I wasn’t happy and told him he was now at high risk of a urine infection. Then suddenly Thursday afternoon they wanted to send him to Leicester for surgery. Sorry WHAT? Where did that come from?
No one wanted to put him under the knife again after last time. I’d spoken to a surgeon about his vomiting and him having a PEG JEJ (the tube he currently has goes into his stomach, this one would go a little further down into his Jejunum so he couldn’t vomit) and we’d both agreed that whilst it would benefit him, we knew that from the last operation he was high risk and he showed us just how high risk he was when he nearly left us and therefore it was not worth it. Then all of a sudden this urologist we’ve never seen before is sending him for surgery? Couldn’t they do a local anaesthetic? Weren’t there other options? I freaked out and said we couldn’t go to Leicester until everyone communicated and made the best plan. In the end an operation was agreed on and a PEG JEJ would be done at the same time to make the most of the anaesthetic.
We were given two dates, one week apart, the first one never happened. It takes a lot for a Nottingham hospital to co-ordinate a surgeon from Leicester Royal to perform a surgery with their team at Leicester Glenfield Hospital and have Glenfield cardiac anaesthetist, a theatre and a bed all available. During the wait I got to take him home..
We went home from one night and I called the next day to have him longer. They said I could have him until it was too much. With the first date for an op being 6 days away I took advantage and pushed myself to keep him home the whole time.
I even got to take him to Brighton! Not quite the Tenerife holiday I’ve now postponed twice BUT progress nontheless.
However, Jaxon likes the hospital and towards the end of our home stay he suddenly had heavy sickness and diarrhoea with a temperature. I tried to stay at home managing with paracetamol and giving Dioralyte which is our plan for home but after a sleepless night Sunday I gave in and took him back first thing Monday. By this point his abdomen was huge and I suspected bladder retention (the bladder gets so full the muscles stop being able to squeeze the urine out). I highlighted this to the doctors and after a few reviews it was agreed and a catheter put in to drain the urine. The hole was so small the first two surgeons failed to get it in (poor bubba!), the third managed to pass a size 4 ng tube to use as a catheter (explanation: tiny tube!). He was in agony for a few days because of what we suspect to be bladder spasms as the muscles adjusted back to normal. From this he also had another urine infection (told ya so doctors!). So he was treated with IV antibiotics. During this time his bloods went completely AWOL with his sodium going high which was a first but equally as concerning as when it drops. So he had fluid replacement whereby his output is measured (weighing his nappies) and fluids were put into his vein to match the output. It was all a lot in one go to be honest and possibly the worst I’d seen him.
I had to go home at night because I’d lost so much sleep having him home and the night he didn’t sleep but it felt awful leaving him alone. I asked his Dad but he was busy so I had to allow myself to leave him with the nurses as he was up ALL night and I knew how damaging that could be to my strength. Luckily he picked up miraculously after a few days and I took him to his nana and grandads on Sunday for a lovely day in the sun before facing another operation date…
Operation number 2 is go
Now we return to the beginning of this blog where I’m sitting by his cotside in Leicesters Glenfield Hospital. I don’t think my feelings change much from those described in Pre-Op thoughts 💭. He’s still high risk. His hearts still huge.
WAIT SIDENOTE: I FORGOT TO TELL YOU GUYSSSSS!!! THE LAST 4 HEART SCANS IT HASN’T GROWN. IT HASN’T GOT BIGGER. IT HASN’T GOT WORSE! Now I’m going to take off caps lock and tell you this doesn’t take us out of the danger zone, his heart grew absolutely huge so it’s still at high risk of obstruction and failing BUT it hasn’t got worse. Whilst the cardiologists mouth twitched with a possible brief smile, she did remind me this is positive but not to get too excited about it. SO yeah LETS PARTY! Erm, after the operation, party after the operation…
Back to the operation. I really want to say this should be the end of it all, this should get us home, but I said that last time and new things have arisen since. If this goes well, his bladder problems and urine problems should be resolved with minimum urine infections (which was the original reason for the circumcision) and with a PEG JEJ we can feed into past his stomach when he’s having vomiting episodes which should help with his weight gain. The risks are the same but I’m reassuring myself that the last operations scares were strongly related to movement of the liver and their will be non of that tomorrow.
I’m sure I’ll feel my stomach in my throat tomorrow but for tonight, he’s smiling at me.
Keep upto date by following my main platform Instagram (@thenursemum) and/or our new Facebook page (Kaytee Jones.) Don’t forget to share our story with your friends, you never know who our struggles could help.
ALSO a HUGE thank you to those who donated for my abseil. I did indeed abseil 85FT down the Queens Medical Centre where Jaxon resides, to raise money for the Nottingham Childrens Hospital. It was a huge success smashing my £200 target with £655 raised. Jaxons face says it all!