Monday (post-op day 4)....a better day.

Daniel and I had a pretty terrible night's sleep, which perhaps was to be expected when you consider he is now only on Tylenol (American Calpol) and the odd bit of ibuprofen overnight, so woke about every hour in pain, and needing to be turned or given medication. However, I am not going to dwell on that because......... the people who told us that Day 4 is a big improvement on Day 3 WERE RIGHT!!!

Daniel woke pretty relaxed, despite his awful sleep. He ordered his breakfast (the food here is 'on demand' so whenever the child is hungry they just choose from the menu and you phone up and order it. It then arrives within 45 minutes). While we were waiting for it to arrive Keith, the orthotist came and took casts of Daniel's feet, ready for his splints to be made.  This was surprisingly non-messy, and Daniel got to choose the pattern he would like to be on the plastic, straps, velcro etc while it was being done. The splints should be ready in about 10 days, by which time we hope Daniel will start to be ready to use them!

We had therapy due at 9, so just before then we lifted Daniel out of bed and into his chair. This was still painful but noticeably easier than yesterday, and we set off down to the Therapy Centre on the 4th floor.

Therapy went well. Daniel is extremely weak - this is not only because he has had a major operation,  but also because the spasticity (tightness in his body), while being the main thing that was preventing him from moving normally, was also the thing that was holding his body up. Therefore, with that removed he has very little normal muscle tone, and it needs to be built up gradually from scratch. However, our physio Nicole was again excellent, knowing exactly when she could push him a bit further, and when to stop, and we managed more than yesterday.

Nicole said that after the session he should aim to stay in his wheelchair for 45 mins to an hour, so we set off to the shop and to reunite Daniel will his 'balls machine' that he has missed over the last 5 days. He actually only managed 25 mins before his back was very sore again, but it was big progress and we returned him to bed feeling pleased.

He then rested for a little while, before ordering his lunch. He also decided that he would like to get dressed for his afternoon physio, and that he couldn't stand having a nappy on any more, so we put on his own pyjama top, with his shorts and some pants, and then set off for our second therapy session at 1pm. Again it went well, and his arms were noticeably a little bit stronger than this morning. The therapist talked us through all the stretches and exercises we need to do every day once we are discharged (on top of the hour of physiotherapy in the hospital as an outpatient every day). She then got Daniel sitting on the bench (with support) and did some throwing games, at some skittles. He enjoyed this, until he started to tire and his back hurt.

Again, he was meant to stay in for his wheelchair after the session for up to an hour, and we were certainly aiming to beat this morning, but in the end we only lasted 25 minutes as Daniel started having muscle spasms again, which shoot down his spine and then make his legs jerk. These are extremely painful (although quite common after the first few sessions of therapy, when the body has been worked) so we had to return to the 12th floor to give him some Valium and hop him back into bed. He then rested for a couple of hours with the TV on. 

Poor Lucy, who has barely seen us for the last 5 days was a bit desperate for a bit of Mummy or Daddy special time, so since Daniel was much improved, Grandma and Grandpa brought her in and left her with us for a few hours so we could be a four again. Rich took her down to the siblings' playroom and they spent some time playing there together, and then they both came back up so she could chill out with Dan, and they could both order from the menu together for their tea.

Once they had eaten we still had our third bit of 'physio homework' to do, which was a third session of wheelchair time. Ideally this would have been an hour, but by this time Daniel was both tired and achy so 35 mins was our maximum achievement. He did some drawing and colouring and then we set off to see Daniel's friend Brooke, who had her operation straight after he did on Thursday. Today is Brooke's seventh birthday, so we went round to wish her a Happy Birthday and give her a little present. Unfortunately Brooke too was doing her 'wheelchair time' homework and had gone off somewhere in her wheelchair so we had to leave it all on her bed and come back again! Never mind - Brooke's family are staying just along the hall from us in the hotel so I am sure the two of them will see plenty of each other in the next few weeks.

So now Daniel is finally in bed and we are waiting for his medication before Lucy and I set off back to the hotel. Tomorrow we have only one session of therapy at 9am, and then later in the morning  (all being well) we should be DISCHARGED - woohoo!!!

As a final point - Liza and Jessamy, this photo is for you, with very grateful thanks!

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.

 

Saturday - Post op day 2 update (6pm)

Daniel and I had a reasonable night, considering what we expected. He could not tolerate being on his back but managed about 2 hours at a time on each side before he became sore and needed to be turned. He was in pain with every turn, but then settled again relatively quickly. We did have the usual regular interruptions for his vitals to be taken, medication given, machines beeping and so on. However, he overall did well and woke up pretty cheerful this morning. He chose some breakfast from the menu, but by the time it arrived about half an hour later, he couldn't manage it, and just needed a nap. Unfortunately, late morning both his anti-spasm and general pain meds seemed to run low and he was in a lot of pain in his back, and unable to do anything at all.  Once the new meds were given through the IV they took nearly an hour to take effect, an hour which was pretty distressing for everyone.

However, once they did work, he improved rapidly and we decided to seize the moment. We turned the TV on to a kids channel, which he can't see when laying down. Then, while he was distracted we popped him on to his back and raised the head of the bed to about 30 degrees. Hooray! There was a bit of complaint but once up he relaxed. On a roll (and again while he was watching TV so distracted)  we fed him the breakfast he hadn't eaten for his lunch. He managed some strawberries and some banana, which was better than nothing!

Propped up AND managing a bit of lunch - result!!

Soon after that Lucy came to visit with Mum and Dad. They had been last night to the turning on of the Macy's Christmas lights and fireworks, which Lucy had loved, and this morning had done a second Zoo visit (the big advantage of it being free - we can pop back as often as we choose).

Lucy enjoyed sitting on the bed with Dan and watching rubbishy children's TV with him (we can't get much children's TV in the apartment so they were riveted).

Maths Bingo on the ipad with Grandma

Dr Park also did his ward rounds and declared that the movement in Daniel's feet is 'very promising for future improvement', which were words we wanted to hear!

After watching TV for the ENTIRE afternoon, Daniel managed a small amount of burger for tea and a yoghurt, and is now about to settle down for the night. Tomorrow morning he will have his IV drip, catheter and all his leads removed first thing, and will go on to oral medications. Mid-morning he will be sat up on the edge of his bed, and if he can tolerate it, transferred to sit in his wheelchair for half an hour. I understand from other parents that this is not an enjoyable experience for anyone concerned, but at least it marks the beginning of the next phase of our journey, and the start of therapy. I'll let you know how he gets on.....

Friday (Post-op day 1) - part 2

The best way to describe today is 'up and down'. After his nap this morning he did brighten up considerably and have several comfortable hours flat on his back. He was delighted to get a delivery of a balloon (and one for Lucy) from James and Beth, which really brightened up his room. When Lucy turned up to visit with Grandma and Grandpa she also brought him a balloon, and he played happily for a while pulling the strings and making the balloons bounce on and off the ceiling.

He was also over the moon to receive 'post' - messages that various friends and adults from school had sent him via the hospital website. He learned that his class had sung Head, Shoulders, Knees and Toes this afternoon because it was one of his favourite songs, and then he sung it too! Later on he also really enjoyed looking at pictures of his class all wearing their pyjamas today for Children In Need. Rich and I between us read him several chapters of 'Matilda', which he is able to just lie back and enjoy.

reading his post

He had been asking to sit up for much of the day, and late in the afternoon they did say the head of his bed could be raised to 45 degrees. Dr Park also did his rounds and said he would really like Daniel to eat something, since he had eaten nothing for 48 hours.

The nurse came in to raise the head of the bed, and Daniel screamed with pain and begged to be taken off his back. In the end we had to lay him down again, and roll him on to his side. He settled after a while, and managed a bit of Angry Birds on the ipad. He ate a cracker and kept it down, so his 'meal status' was changed from 'clear liquids only' to being allowed to order from the hospital room service menu.  When that arrived he again wanted to sit up, so we rolled him onto his back, but he again could not tolerate it, so he ended up managing one chip, a tiny piece of chicken nugget, and half a choc-chip cookie. Well, it's a start at least!

Angry birds Star Wars!

However, he was still in quite a lot of pain in his back, and seemed to be spasming again, with his legs jerking wildly. He is on maximum pain relief for a child of his size so can't have any more, but he was looking very tired, so we encouraged him to go to sleep and eventually he drifted off.

It's now nearly 8pm. It's my turn for the night shift and Rich is about to set off back to the hotel. I think I will probably get into bed myself once he has gone. I have a feeling it's going to be a long night!

Friday (Post-op day 1) morning update....

I didn't manage to update again after my 3pm post yesterday because very soon after that Daniel started being sick as a result of the anaesthesia, and was violently sick around 6 times over the rest of the day. It's very normal but still a bit distressing for everyone, especially when you imagine how unpleasant it is to vomit when you are flat on your back! However, he did manage to achieve sufficient projection to get it all over Daddy and even the floor. Therefore multiple changes of bedding and pyjamas were needed.

He did enjoy us reading 'Matilda' to him, and just lay still, asking the occasional question, and even managing the odd giggle.

Only one parent was able to stay with him overnight, and since neither of us wanted to leave him we tossed a coin, and it was Rich! Therefore around 8.30pm I set off back to the hotel to update Mum and Dad, and transfer Lucy from their bed back to her own in our apartment. Little Lucy is being such a good girl for Grandma and Grandpa, and very flexible. She is desperate to see her Dan and will hopefully be able to pop in for a brief visit later today.

Rich and Dan had about as good a night as you would expect when you consider he has had major surgery, and has machines beeping constantly, particularly when a dose of medicine is finished, plus you have the nurses coming in frequently to turn him and take his obs. However, they did both get some sleep.

This morning, Dan is feeling a bit sad. At the moment he has to lay for 4-6 hours at a time on each side / back, and then be turned. He is uncomfortable on his left side, both because it seems to hurt his back, and because he is on his left arm, which has the IV in it. By 9am he was complaining quite a lot and desperate to turn, but had another couple of hours before he would be allowed to do so. Therefore we were relieved when he drifted off to sleep. Hopefully by the time he wakes he will be allowed to go on to his back.

So, that's it for now. He's a bit too poorly right now for a photo (plus he looks very much like the one I posted yesterday) but here's the lovely view from the window of his room on the 12th floor, out over Forest Park.

Thank you so much for all the lovely messages. I am sorry that I am not managing to reply to most of them, but please know that we are reading them all and they mean a lot to us.

The operation is over.........

It's only 3pm here right now so I expect there may be more to report before the end of the day, but I thought I would do a quick update for all those people back home waiting for news.

The main news is that the operation is over and Dr Park thinks it went well. Daniel is now asleep in his private room on the 12th floor of the hospital, and seems comfortable for the time being.

We arrived at the hospital early this morning and Daniel was very relaxed, happy and chatty. He enjoyed putting on his hospital pyjamas, and both he and Starry, the bear, had a hospital wristband. Rich and I did have to fight back tears though when Daniel told us how lucky he thought he was to have this operation!

waiting to go down to theatre

They gave him a sedative ('sleepy medicine') so he was super-relaxed and floppy when they took him back to the operating theatre. We retired to our private waiting room, and once we had got over the initial whack of emotion, settled in with food and laptop to pass the time. Very helpfully they phoned us every hour to let us know how it was going and how far through it was. Around 3 hours after he had left us we had the call to say it was finished, and a few minutes after that Dr Park came to see us, and tell us it had gone exactly as expected.

We then did have to wait another hour before we could see him in Recovery, where the poor little lad was not in great shape. He was having muscle spasms in his legs, which then caused pain in his back, which was not helped by the epidural. We had to wait for some IV valium to be sent up from the pharmacy, but once that arrived he started to settle, although he was still very hot and sweaty, a side-effect from the anaesthetic.

We were transferred to the 12th Floor, where he has a lovely nurse, with whom he did manage a brief chat. He also managed to wiggle his toes for the first time in his life, which was very exciting. However, they will continue to check he can still do that every two hours so I don't want to shout about that too soon. Now he is asleep. He has a lot of tubes and wired coming out of him, although you can't really see them in the photo.

I expect we will be in for a rough couple of days, and he has to stay in bed until Sunday, but at least the op itself is over.

Wednesday - it's nearly our turn.......

So, the day is almost upon us. Less than 12 hours from now Daniel should be in surgery. This morning we had Daniel's pre-op physiotherapy assessment, which took about an hour and a half. They filmed all his movements at present, so they can compare them later. He worked hard; his walking in the walker was not his best, but it didn't really matter, and he otherwise did really well. We were a bit concerned that he was looking quite pale and tired, and all sorts of bribery and blackmail were needed to get some breakfast down him. However, he seemed to pick up as the day went on and we hope that he wakes up tomorrow morning still well.

After some lunch in the hospital cafe, we caught the shuttle back and then let Daniel rest and play for the rest of the afternoon, while Mum, Dad and Rich went on an ultimately unsuccessful car-hire mission!

We had to give Daniel a bath and hairwash, as instructed by the hospital, not least because after tomorrow he will not be able to be bathed for 10 days (yuk!) The hotel have been brilliant and after our disastrous bath the other night they have provided us with a non-slip bath mat, and also bed rails to stop Daniel falling out of bed. This meant that as long as we kept a hand on him to steady him Daniel was much more relaxed and even quite giggly in the bath, trying to divert the water as it was poured over his head, so it went all over Daddy's trousers.

We then fed him as much tea as he would possibly eat, since he will be nil by mouth in the morning, before putting both children to bed super-early. Rich and I are now trying to stay calm, fighting any waves of panic, and packing what we think we will need in the hospital tomorrow - a bit of guess-work involved there, since we don't really know how the day (and tomorrow night) will pan out. We will be up very early, in order to be at the hospital by 5.45 am, with Daniel due to go into surgery at 7.15 am (1.15pm UK time).

Our early departure tomorrow means we will miss saying goodbye to Sophia, her Mum and Grandma, as they set off back to the UK. Sophia had her SDR 4 weeks ago; she is doing brilliantly and although we have only had a few days to get to know them, they have been so helpful to us, and we will miss them. We wish them a safe journey back home, and will continue to follow Sophia's progress.

Thank you for all the messages of support, we really do value them. We also heard of the beautiful ceremony which Daniel's class held this afternoon for him, which made us feel very emotional. If you could spare him a thought tomorrow lunchtime (Thursday) too, we would certainly appreciate that!