There’s a reason people hate Mondays…

Our last post detailed Alex’s port removal – no more safety blanket. The port hadn’t been used in a year or so and the MRI scans were good so the time seemed right to remove it. On Monday just gone the capricious whims of fate decided to prove us wrong.

Phil received a call from Alex’s school, he had collapsed a few times and was suddenly talking gibberish. Phil’s amazing employers waved him goodbye and Phil took Alex to the Women’s and Children’s. Initially we thought this was something we had experienced before – a shunt malfunction – if the shunt pumps out too much fluid then the brain starts to press on the base of the skull causing some compression and leading to difficulty speaking etc. We expected a few scans, a shunt readjustment, an overnight for obs then home.

The difference initally this time however, was that Alex no longer had an access port, so he had to have a canula in his arm instead. On the one hand, this was good, the nurses in ED are very experienced at putting canulas into little arms, but don’t have the same experience accessing ports. In the past ED accesses were fraught experiences. On the other hand Alex now had to tolerate a canula in his arm – complete with foam board under his arm and a bandage to secure it all. Phil didn’t elaborate completely about the circus which ensued but the look on his face told me it had not been a fun few hours.

The other downside to having a canula in your arm is that once you are hooked up to a drip you can’t take your shirt off, so changing into his pj’s come bed time wasn’t possible.

Alex had blood taken an X-ray of his shunt and a CT scan, which, courtesy of Daddy’s fast talking, was done without the need for sedation! The scans didn’t show any obvious issues so the boys were installed in the Kate Hill ward and settled down for a relaxing night of 2 hourly obs. Unfortunately Alex had another episode during the night – sitting up but unresponsive – even when the ipad was turned off! – then talking gibberish. Fortunately it didn’t last long and was witnessed by the nurses.

Tuesday brought more tests, but no more episodes and a quieter night due to a room change (except when I brought Jenny to visit because the room was right next to the play area and she was having a great time playing in their toy kitchen).

Wednesday morning and the neurosurgery team decided that since there had been no more episodes when Phil felt Alex was back to his usual self they could go. Phil decided to let Alex have a little play to see how he went before packing up, and was glad he did as Alex had another episode a half hour later, followed by gastro like symptoms.
Unsurprisingly it was decided after that to get Alex into the MRI machine. The first estimate for a slot was put at 4pm, then pushed back to 5pm, then to 6. finally at 6.30pm Phil sang the rainbow song and Alex smelt the colours.

Jenny and I arrived only a few minutes after Alex went in, so when Phil came back up from radiology we went with him for tea in the WCH cafe. Jenny was certainly very happy to see her daddy and much honking of noses and belly chuckles ensued. The MRI took longer than usual – a full 2 hours – and at 8.30 we got a call asking for one of us to head to recovery.

Alex is usually pretty good coming out of anaesthesia, unless things are not as they were when he went under. Unfortunately for everyone, where the canula was sitting in his right arm was looking a little red so they removed it and put a new one in, but in his left hand. So when I went into recovery he was trying to pull it out, and it took a solid 45 minutes to calm him down and convince him that he couldn’t remove it and have it put back in his right arm. Initially when waking up Alex won’t let anyone touch or hold him. When you get him to the point where he will sit on your lap and cuddle you know you are past the worst, and thus it proved tonight. Once he consented to a cuddle with blankie and me I was able to ask him about his day, he very proudly told me about playing skittles in the toy room, and how he had knocked 10 of them over at once!

A short walk back to the ward and he was very happy to see Daddy and Jenny, gave out lots of cuddles and kisses then settled in for a cuddle with Daddy.

Fortunately I’d remembered to pack Jenny’s pyjamas and Phil had wrangled her into them by the time I got back with Alex. We left the boys at 9.30 (in another new room thanks to the gastro symptoms) with our fingers crossed for a quiet night for them. With luck we will get the MRI results early tomorrow morning, we will keep you posted!