New treatment

So as planned we went into Great Ormond Street for Aaron's colonoscopy etc on Tuesday 11th. The plan for day #1 was first start bowel prep laxatives (yuck!) then his Humira injection followed by a dexa bone scan, basically an xray to see how his bone density is following some steroid use and planned use. That night we were due to stay in the patient hotel across the road but arrived to be told we had been moved down he road, after explaining to the accommodation officer that it wouldn't be possible to feed aaron on his clear fluids diet without catering facilities, they rearranged things and got us back in the hospital accommodation, lucky that i knew the ropes having spent 2 weeks in with Josh recently!

The next day he had the scopes, but on return the Dr took me to one side and showed me the pictures of his insides and that instead of meeting in 2 weeks time as planned to discuss treatment, we needed to admit him and start straight away. She initially said he'd need a week as an inpatient, so i suggested possibly moving him to our local hospital, however it later emerged this was not possible due to the new medication he was on not being one they were familiar with. He was on a drip, but i'm unclear what for as it was all a bit of a blur, i would guess fluids, whilst going to the toilet the alarms for this kept going off and in the meantime he had had quite significant bleeding in the toilet, all a bit stressful in a small space!

He was then transferred to a ward, the only available bed was in the private ward which was nice, in particular being served afternoon tea gave me a much needed 'pick-me-up'.

 There was then an issue with getting hold of the new medication he was being put on, due to the trust not holding it regularly, bank holidays etc. We were told at this point he would need to stay in for IV steroids until Tuesday, we were both quite upset by this as it would mean missing Easter and all the plans we had. Luckily for us they later found that another patient had not come in for their treatment of this new drug vedolizumab (how amazing seeing as its not widely used!) and so he was set to start this on the Friday as by then it was getting late to start the infusion and 6hours of post treatment observation he would need.

We also had to transfer wards Thursday or the bank holiday as they have reduced numbers of patients over the bank holidays. This involved wheeling all the patients on their drips down the coridoors, i think he quite enjoyed it! He was pretty weary still and had a long afternoon nap i was very jealous of!

That night he had the nurses worried as his heart rate kept a very steady low rate of half what they'd expect for his age, he does often have quite a low reading, and has since I was pregnant, this combined with being deeply asleep from a traumatic day and steroids having a lowering of the heart rate effect, was they eventually concluded, but it made for a long night of alarms going off and not much sleep for me.

In total he had 3 days of intravenous steroids, and the infusion and started on an oral stomach acid suppresser to combat steroid side effects.




We were relieved to be discharged on Saturday in time for a little bit of Easter before straight back to school (who have promised to keep a close eye on him), and after a difficult journey home due to engineering works and a bit of a detour, we made it home.

The plan is for him to stay on the steroids until we see his Dr next week (who was on annual leave for Easter) and then begin to taper them slowly. There is another lower dose steroid he may need to be on too, perhaps longer term, and of course the new infusions. Once off the steroids it remains to be seen if this maintenance med will finally be the one that works as its been 4 years of treat and watch him relapse so far, and options are getting fewer and fewer. This is sort of what we were expecting treatment wise, we knew he was flaring up again, but his symptoms were not the worst he has ever had yet his insides were the worst they have been, it all happened rather more instantly than anyone had thought. We are very glad to get him off the low dose chemo though so every cloud.....
For now he is eating as normal but tube feeding is another treatment option we will discuss next week. His next infusion is also due next week, so it will be lots of London again for us!
As previously he is quite bouncy on the steroids and can go up and down mood wise very easily, and is still suffering the side effects of the previous meds, mainly food associated nausea.