Its 10pm the night of the op and I’m desperately trying to relieve the tension in my head by writing out the days events. It may not relieve my head ache but it will at least document my fresh thoughts.
Jaxon went for the surgery around 10am, the anaesthetist said with all four procedures and two surgeons it wouldn’t be done until around 1pm. I had asked the anaesthetist for more details about the risk, in a nut shell, he told me what will be will be. Jaxon is a higher risk but it wouldn’t be happening if the risk was ridiculous and they will do what they can. He did explain that the concern would be getting him to sleep and then again waking him up, which was new to me. I had only thought of the risk getting him to sleep which had allowed my imagination to believe worse case scenario would be quick. Therefore, once he’d been gone for an hour or so I could relax. But no, waking up too *insert eyeroll and sigh*.
I waited in the ‘quiet room’ on the ward. It had been suggested to wait in the parents kitchen but I just did not want to be around people. The first hour passed so I allowed myself to think he must have gone under the anaesthetic successfully. I read some of my book ‘Being Jordan’ by Katie Price (strange choice right? Not so much when you think of her as a single parent to a disabled son that has been successful in her career) and just waited..
Before 12 a lady came and said the surgeon was here to speak to us. My stomach sunk but the lady had a polite smile, not a face of doom and gloom, so I thought it can’t be bad. That being said, it was only 12, it was too early. The surgeons face didn’t display doom and gloom either. We stood in a room and he explained. Jaxon was okay, he managed the surgery but they had only been able to do three procedures out of the four. The kidney injections were done. The circumcision was done. When they attempted to do the fundoplication (the one to stop him vomiting) they had to lift his liver and his heart rate dropped. The procedure was all to be done laparoscopically (keyhole surgery) but as this was a problem they opened him up to try and get the job done. After opening him up and getting inside properly when they moved his liver again, his heart rate dropped again and the anaesthetist had to tell them they could not continue. His heart would not tolerate this. So they finished with the PEG (the feeding tube in his stomach) and left it at that. It was said he nearly crashed twice.
The fundoplication is what made this operation happen. It was the reason for this operation. Everything else had just jumped on board for the anaesthetic opportunity. The fundoplication was to stop his continuous vomiting. I was disheartened that we may not have made any progress at all. The journey was not over with the outcome we had hoped for but I knew I had to be grateful he had made it through. I am grateful. It’s just been a long 8 months and I’m exhausted – I had really hoped for a breakthrough.
We had to wait to see him on the Paediatrics Intensive Care Unit (PICU). It took around another hour. He was this tiny baby on a bed in this huge room of machinery. He had his NG (nasogastric) tube still in place and stuck to his face. He was intubated on a ventilator so he had a tube going down his throat breathing for him, which required tape around his mouth and completely covered his top lip to hold it in place. He had a central line (a long thin flexible tube going into a large vein) in his neck. The PEG tube coming out of his stomach. A vertical wound going down his abdomen. A cannula (a small thin tube going into a vein) in his right hand and another in his right foot. An arterial line (a long thin flexible tube going into an artery) in his left upper inner thigh. Then they opened his nappy and showed me his circumcision which looked so so sore.
It was a lot to take in and despite no tears until now, it hit me seeing him like this. Tears rolled and the nurse worried told me “he’s okay, he’s okay!”. But he wasn’t okay. I knew what she meant but all I could think was “he’s just a baby, he shouldn’t look like this, he shouldn’t be going through this“. It broke my heart. He’s only 8 months old, he’s been through so so much and here we are with now a physical representation of his life. I just looked at him and instead of feeling the relief I had hoped for, I could see our rollercoaster ride was no where near ending. In fact, it may be going off the rails.
Despite all he’d been through and being heavily sedated on morphine, he was still clutching my finger when I held his hand with the strongest grip.
Blood results came back showing a low haemoglobin (making him anaemic) and so it was decided he needed a blood transfusion. He ended up having two. The low potassium he’d had before surgery continued after and so he was also receiving potassium through the central line in his neck.
Because of the ‘near crashes’ in theatre a cardiologist came to do an echo (heart scan) in PICU. I understand a lot, but the severity of his heart is so complex. This was a cardiologist I hadn’t met and they all do things differently. She was quite stern but she knew what she was doing. In the end I asked what she’d seen. She gave me numbers which no one else had before. Something about a normal hearts thickness (I think), should be under 10mmHg and his is 40 something *sigh*. Quadruple what it should be.She said she’d been looking to see if there was anything different that caused the way his heart responded, but in the end she said it’s just the state of his heart.
He’s still in PICU right now. They’ve extubated him meaning he’s no longer on the ventilator, he’s breathing for himself. He’s woke a few times but each time he’s looks alarmed and cries and writhes in what looked like pain and discomfort, so we’ve kept his morphine going to keep him sedated. I love to see him awake but I’d rather him sleep away the pain. Plus when he wakes he pulls at everything in distress and theres just too many lines going into his veins and arteries and this new tube going into his stomach, which mean when he wakes he needs restraining – even more distressing for him. It’s difficult to watch.
The nurse we had today was fabulous. She pushed for the transfusion. She was assertive, confident and hard-working. As Glenfield doesn’t normally do general surgery (they’re all about the heart), they weren’t familiar with how to start his feeds again with the new PEG in place. The nurse reached out to the surgeon, the dietician and a ward for advise and they all said different things *insert eye roll*. We discussed all the theories and combined them. I loved how passionate she was about his care, which I have no doubt is how she is with every patient. So feeding wise he’ll start on a really low amount tomorrow through this new tube. I’m so anxious about whether he tolerates it. I can imagine the discomfort from the strain of vomiting with all these new wounds.
When the nurse came to handover (tell the next shift nurse all about Jaxon) it really highlighted how complex he is. I tell his story all the time to different doctors but listening to someone else trying to recall and relay it all, I felt bad for her. It took a good 20-30 minutes. It was at this point, many hours after speaking with the surgeon that I politely interrupted the nurse to ask “Do you know what his heart rate dropped to?”. She had been explaining the surgery to the next nurse and had dropped the volume of her voice explaining how he they had needed to do heart massages and when he ‘came back‘?? Lady, I do not miss a thing about my baby. She didn’t want to answer. Not in a nasty way, as if she was protecting me. “Erm, very low, lets just say, very very low”. She looked uncomfortable with the question. I had thought maybe 20-30bpm (Jaxons normal heart rate is 110-130bpm – on medication). The nurse taking over said she’d have a look for me but the current nurse said “no, no, I know what it was” and squeezed her pen tightly into her chest, she really didn’t want to tell me. The nurse taking over asked what it was and I reassured her “it’s okay, I know it was low, you can tell me..” . I mean, what difference did it make?
“4″ she responded. “4??” I repeated back to her. She nodded her head.. 4. His heart rate dropped to 4. I mean that’s basically stopped hasn’t it. I knew he would be in the best hands in surgery should anything happen, but when they said he nearly crashed twice I thought nearly was like, a risky low heart rate.. not pretty much stopped. I mean, count to 4 in one minute. That’s painfully slow. Borderline non existent.
So I nearly lost my baby, twice in those couple of hours I’d handed him over. That explains why the cardiologist came over so quick to scan him. I can imagine the theatre scene, I’ve experienced it with adults. I knew I could trust that environment, and I’m happy I didn’t have to see it. I never want to see his life on the line like that. All these papers I’ve signed for resuscitation plans and what would happen if.. that basically just happened behind closed doors. Thank god for the skills and technology available today.
He may be complex and have a ridiculous list longer than my arm of rare medical conditions. But he is amazingly strong. He has SO SO much going against him. And he just keeps pulling through. I admire him. He is truly, truly amazing.
Thank you for reading.
I’m always interested to hear how my blogs come across to readers. Many of you are so so lovely and message me directly on social media but I hope one day to look back on these blogs and smile having made progress, so it would be lovely to see the comments on here.
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