Monday, 19 November 2012

Sunday (Post op day 3) update....

I think it would be fair to say that most of today has been our lowest point yet. We had been warned that 'getting out of bed day' was very difficult, but nothing prepares you for seeing your child in that amount of pain, and yet having to force them on.

The day started with the catheter, epidural, IV and leads all being removed. That was unpleasant. but brief as well. Much as it was lovely to see him without tubes and wires, this had two disadvantages, firstly that he had to go onto oral medications and secondly that he would have to either get out of bed every time he needed the loo, or wear a diaper (to use the American term). Daniel wasn't particularly happy about it, but since there was no way he was going to cope with being lifted out of bed every time he needs to go, and also because the op can cause bladder disturbance for up to 6 weeks, we went for the nappy, assuring him it was just temporary.

The Physiotherapist was due at 10 to show us how to lift him out of bed - this has to be done in a very particular way when you consider that he has had back surgery, as you could easily damage him. The pain medication is meant to be topped up 30 mins before therapy, in order to give the child the best chance. However, bearing in mind that all medicines are now given orally, and that the primary pain killer liquid given tasted absolutely foul, he refused to take it and once it had been given was then sick. Time was now ticking on towards 10am. The nurse then suggested that we try giving him Tylenol - the American version of Calpol. This was mildly more palatable, but again after only about 5 mins he threw it all up (along with the breakfast that we had been so proud to get into him). Shortly after this the therapist arrived to find total chaos with puke everywhere and the nurses etc about to give him a bed bath. There was also the net result that Daniel had no pain medication in him. The therapist took the hint and left again. After the bed bath Daniel was totally drained and drifted off to sleep.

Unfortunately, he had been asleep no more than 10 mins when the therapist turned up to have another try, just before 12. I had been warned that the first getting out of bed was not fun, and indeed it was obvious from the screaming that Daniel was in a lot of pain as he was first sat up on the edge of the bed, and then lifted into his wheelchair. He managed about 30 seconds in his chair, and was then lifted back into bed and rolled onto his side, where he calmed. The therapist then said that we needed to be downstairs in the Therapy Centre for our second session of the day at 2pm.

Daniel drifted off to sleep, but again we had to wake him before he was ready, at about 1pm, because we needed to try to get some lunch into him, plus medication, and then tackle the whole lifting out of bed thing ourselves in time to get to Therapy. We started mixing the medication in with food, and in fact the 3 spoonfuls of yogurt mixed with the medicine were about all he ate, but we were happy that at least the medication had gone in.

At 1.50 we tackled the lifting out of bed. Daniel screamed with pain sitting in his wheelchair, and continued to scream all the way to Therapy, which broke our hearts. As soon as we got there the therapist lifted him out and lay him on his side on the therapy table. He could see that Daniel was in a lot of pain, and was still unable to tolerate being on his back at all so the therapy session was very minimal. However, the therapist had searched out a Darth Vader jigsaw puzzle, and while Daniel was distracted doing that, he did manage to gently stretch out his legs.

He also briefly managed to roll him on to his tummy over a pillow.

The therapist tried sitting him on the bench, but again Daniel just could not bear the pain, and so he was transferred back to his chair to go downstairs. In fact he was in such distress that the therapist put a pillow under his head, tipped the wheelchair backwards and he and Rich carried it back downstairs between them. We arrived back in Daniel's room and transferred him back into bed feeling very dispirited, but relieved that we could now just let him rest for the rest of the day.

However, we were sadly mistaken because less than 10 minutes later the nurse arrived to say that 'Day three protocol' said that children must be given a suppository if they had not moved their bowels naturally by that point (and most children haven't). So, that was given (a very minimal discomfort compared to everything else) and we sat back and waited the predicted hour for a result. Mum and Dad arrived with Lucy for a visit, and we all tried to distract Daniel as his tummy became more and more uncomfortable. In fact, Grandma invented the 'Let's all make a bet on exactly what time the poo will come' game, a brilliant example of the lengths one will go to under such circumstances! When the time came, Daniel was really unhappy about doing it in his nappy, and to our amazement, demanded to be lifted out of bed, on to his 'toilet' (like a children's commode / big potty chair). He was obviously in pain, but was determined, and seemed to cope well with his pain level once on there, perhaps because his back did not have to press against the back of the seat. The deed was done, and I have never been so delighted over a bowel movement in my entire life! You can see in the photo below how much discomfort Daniel was in (and bear in mind that this was much less than he had been in earlier) but you can also see the grin on Rich's face!

In case you are thinking just how deranged I have become if I am posting pictures of my son on the toilet, I will let you know that Daniel was sufficiently proud of his achievement (the getting out of bed bit, not the actual product) that he said 'Take a picture for the website, Mummy', so I did!

That achievement lifted our spirits hugely, as did the fact that an hour or so later, Daniel allowed us to roll him on to his back, and raise the head of the bed so he could watch some TV and consume a passable amount of tea (with Valium hidden in the dessert!) He did suddenly fade quite rapidly after that, and we had a difficult few minutes as the nurses came to do inhaler, blood pressure, temperature etc, and we tried to clean his face and teeth, and he certainly did not enjoy having the bed lowered again. However, once back on his side he went off to sleep comfortably, and Rich was able to set off back to the hotel.

It's almost 9pm and I shall go to bed as soon as I have posted this. Tonight we have the luxury of not being woken by machines etc beeping, although Daniel is likely to wake in pain as his medication wears off and I am not sure how easy it is to hide it in food in the middle of the night.

Tomorrow is a new day and I have been assured by a number of people that day 4 is a huge improvement on day 3. I desperately want them to be right.



  1. Bless him, what a big struggle for a little boy. Sending Daniel lots of love and good luck for Day 4 - like you say, its a new day xxx

  2. We continue to think of you all. Sending you lots of love and gentle hugs Daniel. You are amazing!
    Aunty Jo Xxx