We did get discharged today, but it was by the skin of our teeth! Daniel wanted to be dressed this morning in his new top, bought by Grandma and Grandpa, which reads 'Know Pain, Know Gain!' It seemed highly appropriate.
However, this mantra didn't give him much help in his therapy session, which did not go well at all (and hence I didn't take any photos). He had only been given Tylenol in the morning and was just in too much pain to want to try anything and the therapist also said she thought he was afraid of the pain, which was making him tense up, which would then make the pain worse again... .. you get the idea. He is still struggling to tolerate being in his wheelchair for any periods of time, and she said that he needed to be able to sit in his wheelchair for at least an hour to be discharged. This was depressing news. We returned to the 12th floor to give him some ibuprofen (and since he was in great distress by the time we got up there we couldn't even give the pain relief until we got him calm enough). We have had a really lovely nurse the last two days, Denise, and she was brilliant at calming Daniel (and us). We put him back to bed for an hour to give the ibuprofen time to work, and during this time the hospital clowns called by and blew bubbles for Daniel to catch, gave him stickers etc.
We then girded our loins and explained to Dan that we had to get past this wheelchair obstacle if he wanted to get out of the hospital today. Before we put him in his chair, Rich was able to give him a long cuddle, the first time he has been able to hold him for nearly a week.
We then lifted him into his chair, set an hour to count down on the clock on Rich's phone, and set off round the hospital to try and distract him. One of the places we visited was the Olsen Family Garden on the 8th Floor of the hospital, which is a beautiful sanctuary for the children and their families, and has all is Christmas decorations up, so is even prettier than usual. It also has great porthole-type windows, with views out over Forest Park.
We also looked at a couple of the many fish tanks, as well as the library, where we borrowed a book on dinosaurs, and finished (as the last few minutes ticked down) in the shop! Good old fashioned bribery - he chose a car! I won't pretend that it wasn't that it wasn't extremely hard work for us all, as Daniel was in pain at several points, and we had to distract him, encourage him to relax and breathe deeply, and slightly shift his bottom in his wheelchair to make him more comfortable. However, we achieved it, and then returned him to bed to recover and wait for his lunch order to be delivered, while I went through the discharge papers with the nurse, and Rich went down to the pharmacy to pick up a large amount of medication.
That sorted, we were ready to go, but still had to face the tricky task of how to actually transport Daniel back to the hotel, bearing in mind how much pain he is in, and the particular way in which we have to lift him. Dad brought their hire car, with car seat in it, and Rich gently lowered him in. I won't pretend that Daniel was comfortable or happy, but he managed the ten minute journey back, and once settled on the floor of the apartment he was very happy to be back in his American home. He and Lucy had a lot to catch up on......
I mentioned yesterday how weak he is post surgery. To give you an idea of what I mean, when we put him on the floor this afternoon he was comfortable on his side, but was unable to even roll over. He can't sit on the floor at all, or push up into a crawling position or up on to his knees. He is also struggling to bear any weight on his feet at all We have a mammoth task ahead of us, firstly to bring him back to his pre-op strength (aimed for by around when we return home just before Christmas) and then to make the progress beyond that. However, while playing on the floor he tried repeatedly to roll over, and after about 20 attempts over 2 hours, finally he managed it and got on to his tummy! Once there, while playing Top Trumps (Star Wars version, of course) he managed to prop himself on his elbows and lift his head off the floor. We were happy with that.
This afternoon Dad had also taken Rich down to the car hire place where Rich hired us what is basically a van! Like our wheelchair - accessible car at home the seats are higher, which makes it easier to lift him in and out, and it should be far easier for us to come and go to the hospital, supermarket etc.
We went downstairs to the hotel 'Social Evening' (which is defined as free food on Mon, Tues and Weds evenings), and Daniel was briefly happy and relaxed in his wheelchair....
However, after only about 20 minutes he was in pain again and begging to get out, although we pushed him to about half an hour by distracting as much as we could. The pain he is experiencing in his chair is what is concerning us the most at the moment, not least because the other two children who had their op last Thursday are now sitting relatively comfortably in their wheelchairs for quite long periods.
So, tonight I have the luxury of writing this sitting on the sofa in our apartment, with the children asleep (although in Daniel's case that probably won't be for more than a couple of hours at a stretch before he needs turning or pain relief) and our family together again. From tomorrow we start our outpatient physiotherapy, every weekday for 3 weeks. We are hoping for a better session tomorrow than today. Uncle David - we will also be thinking of you tomorrow (which will actually be 'today' by the time any of you read this).
Finally, to show you a bit of progress, you will remember the photo of Daniel struggling and sitting on his toilet chair in great pain on Sunday. Here he is tonight, giving a thumbs up and definitely more comfortable and relaxed. (This is absolutely the last toileting photo I will publish, I promise!)
Once again, thank you so much for all the lovely emails and comments. I hope that over the next few days I might manage some replies, but in the meantime, and as before, please know how much we value your support.