I’ve been anticipating this operation for a long time. I’ve wanted it for Jaxon. I’ve pushed for it based on the intent to improve his quality of life. It’s horrible to see your baby retching, heaving, vomiting their entire feeds and then falling asleep from exhaustion and being weak due to the lack of nutrients. But now we’ve got the date I’m faced with the reality that to get the intended outcome of leaving hospital and trying to live a normal happy life with him (or as close as we can get to such), I have to hand my baby over to the surgeons.
Now, the surgery isn’t my concern. Jaxon has had surgery before, he had a hernia operation back in November. Jaxon has had general anaesthetic twice, once for the hernia and then again the same week for an MRI (babies have to go under general anaesthetic for an MRI to keep them still). Neither of these bothered me. I’ve worked in theatres, I know they have to be correctly staffed for it to go ahead, I know how controlled the environment is, I know these people do these operations all day every day. So if anything, I was pretty relaxed knowing he’d come out the other end, better than he went in. That’s the whole point.
The difference is, back when he had them we didn’t know about his heart (sometimes I wish we didn’t know now). He’d had a scan which showed a possible small VSD (a small hole in his heart) but this is really common in babies and it was expected it would heal itself in his first year. It wasn’t until a month or two later a repeat scan revealed his heart muscle had thickened. And then it’s got worse every month since. Great Ormond Street looked back at the first scan he had and said it did look larger than it should have then also, but it has continued to grow and his heart muscle has got thicker and thicker since, leaving less room in his heart for blood and increasing his risk of a blockage (medical friends don’t judge me I’m trying to put everything as simple as possible so everyone can understand).
When his cardiologist originally agreed to this operation she said it would go ahead because there’s more than a 50/50 chance he’ll make it through – if it was less than 50% then it wouldn’t be going ahead. Which can sound reassuring until you think, well what percent is it for him? No one can tell me. Over 50 isn’t that reassuring (lets flip a coin, no thanks). Then when we met again this Friday just gone and after scanning his heart again she explained it was worse than it was in February. We discussed the operation and she said “if he makes it through” which without my input she corrected with “I don’t know why I’m saying if, he should make it through”. I can’t fault her for what she was saying because I understand completely. It’s probably more odd that her saying these things doesn’t startle me. It all just feels so surreal. It’s almost as if I know the facts, but the facts aren’t affecting us right now so how much can I worry about something that isn’t currently bothering him?
That huge heart of his has totally taken the limelight away from the actually procedures he’s having, which are nothing to do with his heart. There are so many other things to worry about; a new hospital (Glenfield), the ACTUAL procedures and what can go wrong with them (he is have FOUR), how this is going to affect him. I’m worried that he’s made so much progress rolling on to his side and letting me hold him in a sitting up position, that the surgery on his stomach and the tube that will be coming out of it will take us back 10 steps. I’m also worried about going home; how different PEG feeding will be to NG feeding (hopefully it will be a lot better) and if there’s any support in the community as I’m a single-parent . Having a baby is a big deal but having to do medications 9 times a day, tube feeds, physiotherapy, attend numerous medical appointments each week and not get to overwhelmed with it all on top of having a baby. Is just too much 247.
To summarise, his heart puts my heart in my stomach and makes me feel like there are a million tiny people tap dancing in my chest (I really shouldn’t have got my eyelashes redone this weekend because I am about to cry them all off). But I feel like considering he has these rare conditions that he should have because they go completely against the statistics, then he’s clearly an anomaly and these heart statistics don’t apply either. So I’m probably going to lose 50 years of my life tomorrow (do i even have 50 years to give?). But it’s pure anxiety, my brain tells me he’s gonna handle it like the anomaly he is (I like that name for him now!). However, there are more realistic concerns to come. How he handles the operation will determine how much longer we’re kept locked up. The surgeon suggested confidently that it’s normally 4-5 days but I don’t think he realised Jaxon is not the norm. If we’re in longer will we get sent back to Nottingham (I cannot stay in Leicester, this room is smaller than a cell and the view is worse than inmates have I’m sure)? How will the new tube wound affect his strength and ability? Will the procedure to stop him vomiting work? Will the circumcision and kidney injections stop his urine infections? How sore is his winky going to be? How is he going to be affected by the recovery? SO many questions, SO many concerns.
However, if this goes as I’m praying (and I hope/assume you are too) then we will be home in 4-5 days. It will end this long hospital stay, Jaxon will start gaining waiting from the new and improved feeding and lack of vomiting and we’ll have reduced the number of reasons for Jaxon to return to hospital (I’d say more than half his admission have either been vomiting or a urine infection). This op could be EVERYTHING. It has so much potential. We could really do with some good, positive news about now!