I've been putting off writing this post for months - so much so that I've got a dozen other ideas for posts backed up in my head, but I can't write them until I've written this one. The thing is, I don't want to think about it. I don't want to relive it and tell you how I felt, because I never want to feel like that again.
So here is a bald, stark list of facts to sum up the story.
- At the last operation the anaesthetist noticed that the little guy was looking a bit pale. She ordered a blood test and, as I mentioned, it took about half an hour to squeeze a few drops out of him.
- Unsurprisingly it turned out they hadn't taken enough blood so, instead of going to his little friend's first birthday party, we went to the hospital to get another blood test.
- That night we got a call at 7pm from a concerned doctor saying his haemoglobin levels were frighteningly low.
- The next day (halloween) we went in and to my shock they decided to give him a blood transfusion.
- I sat next to him through the night watching the shiny bag of blood draining into him trying to distract myself by thinking of vampire-baby jokes.
- They told us we'd be amazed by a sudden surge in energy in him. Instead the next day he became tired and floppy and started running a temperature.
- By the middle of the next day he coudln't keep any of his food down. We were syringing Dioralyte into him and hoping for the best.
- That evening we finally called the hospital. They said bring him in - they put him on a drip to keep him hydrated and nil by mouth to rest his stomach.
- He was due to have a dilatation in 24 hours so now the surgical team at his main hospital got involved. They wanted him transferred so they could assess him too.
- So that's how we found ourselves in an ambulance travelling the 30 mile trip. The paramedics kept holding an oxygen mask to his face - this was the first time I started to suspect that something was really wrong.
- The surgical team took one look at him and declared him unfit for the operation (winning the medical version of the No Shit Sherlock awards)
- Team after team of doctors came to visit him - the gastro team, the surgical team, the paediatrics team, dieticians and physiotherapists. Every hour or so I had to retell his story to a new and different specialism. I still didn't really know what was going on - just that he couldn't clear his lungs.
- Every few hours nurses would come in and suction him. Physiotherapists would pat his body to try and loosen the flem on his chest. All the while his Sats (oxygen levels) were hovering around 80 when they should be 100.
- A week before he had been running around in his walker - now he was more or less tied to a cot, hooked up to the Sats monitor, the oxygen pipe and with a nasogastric tube for his food.
- Meanwhile I lived on the fold-up bed next to him, trapped miles from home by myself for most of the time going slowly stir-crazy.
- I was having my first night off - about a week after he was taken in - when the chest x-ray results came back and showed "a shadow" as I was told on the phone.
- I spent all night terrified that he had pneumonia.
- And guilty - the reason he wasn't fighting the infection off was because he was so weak from the anaemia - which made me feel I hadn't been feeding him properly.
- In the morning the doctors explained the shadow was "gunk" and the physio was starting to succeed in shifting it.
- He was finally diagnosed with a virus called Parainfluenza 3.
- There was no sign of an infection but he was given antibiotics just in case, which gave him spectacular diarrhoea on top of everything else. We went through about four babygros a day.
- We bumped along the bottom for a while with his condition neither improving nor getting worse.
- Then, slowly, he started to improve.
- He started to eat.
- His lungs cleared.
- He started smiling again.
- Finally his sats levels started to climb.
- And then one glorious day - three and a half weeks after we came in, we were allowed home.
You can imagine his little face when we walked in the door at home - he was laughing, smiling and jumping around in my arms. He had probably almost forgotten where we lived - I know I had.
But it's taken a month out of our lives, and that's hard to recover from. The little dude flourished for a few weeks after that - making up for lost time - but we didn't see any more new milestones for a while. And when we go back to hospital he cries at the sight of a stethoscope.
As for me, I'm still recovering - still making up the lost time at work, still trying to relax and keep calm every time he throws up a feed or has blood in his vomit. The stay in hospital changed everything.
But on the plus side, I learned so much about his condition, I accessed so much support from the medical teams and even met another Tof mum whose little boy was in hospital at the same time. So things aren't so bad. Whatever doesn't kill you makes you stronger, and all that jazz.
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