tests week

so we are back from our tests week, no real results as we will get these on 17th March. its was a busy and tiring week and despite some smiles Josh was tired from the sedative and the stress.

Josh's bowels settled down just in time for our trip up to GOSH and he started to eat again. He looked a bit odd as he was quite slight but with a distended tummy.

We arrived Tuesday morning kindly escorted to London by my Dad and after a short wait Josh was given his laxative for bowel prep and a canula put in to take bloods and give fluids over night. We then spent the day waiting around for the meds to take effect, chatting to other Mum's and playing with other kds of all ages. Josh was on good form charming the nurses with his smiles and barely seemed to notice he wasn't allowed to eat all day. Being at GOSH has the effect of making it seem like Josh has no problems at all by the time you have seen the variety of conditions the children around the hospital have.
The over night stay was unsettled due to the noise of sharing a ward, other kids crying, TV's on til midnight, being woken by the IV fluid drip machine, Josh waking up, trying to sleep in the chair bed alternated with sharing Josh's cot!
The next day Tom came up and Josh had his sedative at around 8am and quickly got cranky followed by sleepy until 10am when he went in for his endoscopy and gastroscopy. Contrary to the leaflet we were not allowed to stay in with him and waited the 45mins before he came back round. After a bit of crying he then slept of the sedative for most of the day on and off and still managed to sleep through the night!

We are really waiting a couple of weeks for results but there was nothing to be seen from the upper scope as they would expect for his age apparantly, the results of the biopsy are more important here. The lower scopy again did not show some of the things they were checking for but did show all his lymph nodes in his abdomen were swollen which was also the case in September and October. The consultant will review the bloods, scopies, scans, history biopsies etc and tell us what she thinks on the 17th.
That night Josh and i stayed at Tom's Aunt's and i enjoyed having a proper bed and a nice meal, glas of wine and a chat, Tom went home.

We were back at GOSH the following morning for 9am for the probe to be placed. Josh really got upset with this compared to the previous times (through the nose) and it seemed to me to be hard to put in and they tried both nostrils before going back to the 1st one. They then had to x-ray top check the placement and readjust. Unfortunately around this time i realised it would have been better for Tom to be here for these tests than the previous day, but too late now! i had all the bags to carry and Josh to watch so he didn't pull his tube out and no ward to be on and couldn't check in to the patient hotel where we were staying until 3pm. We went for a walk to the children's park at the end of the road, and then back to the playroom where 2 hours after it was put in he pulled it half out! the nice staff in the playroom kindly kept all the bags for me while i rushed him back to the ward before it all came out and had to be re x-rayed. Luckily despite screaming, coughing and retching it went back in.
The rest of the day was spent watching him like a hawk whatever we were doing, even going to the bathroom! It was a bit lonely in the patient hotel room, but very nice facilities a bit like a travel lodge, and there was a communal lounge/diner/kitchen.

After very little sleep (watching the probe) we went back and had it removed and then Tom came and collected me from his Aunt's again....phew!

Josh is eating well after his 'detox' type day! and is happy and smiling again and fully recovered from any sedative, nappies all ok!

Ethan was a good boy whilst we were away and seems to cope well with it all. His hearing is pretty bad at the moment, but he is due to see the ears dr week after next. We also got the news this morning he got into our 1st choice school.

Next;
scan and surgical follow up next thursday.
gastro consultant on the 17th