Well this past week did not really go as planned. It was certainly not supposed to be like this!
It was supposed to be all about a celebration with our little man turning three on Wednesday the 9th of March. We had a family celebration planned for the Wednesday night that Nanny Helen was also going to join us for, along with a little party for a few kiddos Nate's age and their parent friends of ours, for the Saturday. I had organised some outdoor play equipment for a six hour hire on the Saturday, along with an Old McDonalds Farm cake. Okay, and there might have been a few other party themed items planned too!
Instead, we spent most of the week at Starship!
It all started on the Monday after I got home from work. I had been home about ten minutes and Nate had just finished his dinner. He came over to the lounge area to play with some toys and started to bring one over to me. About halfway there he tripped over one of his other toys and lost his balance, going down on one knee on his mat. It was a very minor trip, and he got right up, with a little bit of a cry and started to come over to me for a quick cuddle, as he does when he wants a kiss to make it better. He didn't get up though, and instead lay back on the mat like he does when he is tired and wants me to go to him, which of course I did.
I got over there and his eyes had rolled back in his head, his toes, legs and arms were completely rigid, and he was unresponsive. I called his name three or four times, and he didn't show any sign of hearing or seeing me. I called to Helen to call an ambulance but she was already starting to dial. At that point he whimpered, so I knew he was breathing (this all happened in a manner of 20-30seconds), and I turned him into the recovery position. Not long after he started to get quite distressed, not with pain, but more in confusion and shock. I picked up and sat him in my lap to cuddle him, and he was clinging to me. Poor little man was completely beside himself. By the time the paramedics arrived, he was calmer, but almost so chilled and so relaxed that he was bordering on 'out of it'. Normally Nate wouldn't tolerate being touched by big burly guys in his bedroom, but he showed no reaction to them. Off we went on the ambulance while Helen called Robin and stayed to pack up his bags.
We ended up in A&E for the next few hours, having bloods taken, urine tests, and an ECG heart test. Nate seemed fine there, in fact was such a good boy tolerating all the nurses and doctors and even chatting and entertaining them! Quite the character!
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| Having his ECG |
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| Chilling in A&E after his possible seizure |
They weren't sure what he had experienced, but said it could have been a 'blue' episode where kids monetarily stop breathing, or a seizure. I'm pretty sure it was a seizure - I've read enough about them through our T9M group, so was pushing that our paediatrician was contacted so we could do follow up tests. I was worried on a couple of counts - Nate has slightly more fluid on the brain than typical (and slightly less white matter) which has always worried me that it might mean a future possible hydrocephalus situation and a possible brain shunt, OR the start of what might be more seizures to come. Anyway by about 10.30pm, we were back home, knowing that a paediatrician appointment was to be prioritised for us by Starship.
The next day (Tuesday), we planned a quiet day hanging out with Helen and Nate ate and drank normally, and played all day. When Robin got home he noticed that Nate seemed a little off balance (he is always a little uncoordinated with his diagnosis, but his balance is generally pretty good), so we decided to closely watch him.
The next morning (Wednesday), was Nate's 9th birthday! Helen had left a trail of balloons outside his door, and Nate was loving throwing them all around and opening a few of his presents.
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| Morning bottle with Mummy, as a BIG three year old! |
Inspite of our happy start, he just still didn't seem right, Nate's balance was definitely off. So I rang the GP who advised us to go straight back to Starship. While it can be expected to take 24hours to come right after a seizure, going on any more than this isn't thought to be normal. So.....we went in on Wednesday late morning, sat in A&E most of the day, before they decided to admit him for a brain EEG. Robin arrived mid afternoon, so between the three of us (Helen too) we tried to keep Nate occupied. Thank goodness for Helen being there to help out. Did I also mention that this was on Nate's birthday?! So first party cancelled! After a long day, we were admitted to Ward 26A and checked in for the night, with Nate's EEG scheduled for the following morning. Mum and Dad came in and we shared a McDonald's dinner in Nate's room. Yep...living! I got the joy of staying the night - I reckon I got four hours sleep TOPS. I was awake at both 12am and 4am when they came in to do his obs, and didn't get to sleep again as had to get him up at 5.30am for breakfast (he was nil by mouth after 6am).
Robin arrived just after 7am, and I shot off home and to work while Robin stayed with Nate all day. Nate was then sedated and prep'd for his ECG. The sedation drugs were just supposed to relax him but in no time at all he was fast asleep!
Nate slept through his brain EEG like an awesome chappie - here he is all wired up.
And then they got to sit around until the sedation eased, and the results could be quickly checked to make sure nothing severe going on. Nate took the opportunity to sleep again :-)
Anyway eventually, Robin and Nate got discharged in the early afternoon, with the fuller results to come at a later stage, as well as a brain MRI.
At this point, Thursday afternoon, we thought we were through our rough week and we were all back at home! Nate was super tired and just wanting to sleep on his mat, and avoided any dinner. Initially we put it down to the effects of the sedation and a big week. But as the evening went on, it became apparent it was more than that - high fever, rapid breathing, very lethargic, distressed, unhappy, and then a couple of big chunders. So......back to A&E we went. We were concerned it could be a bug picked up from our hospital stay, OR could be connected to the issues from earlier in the week. After a few hours at A&E with them checking him over, we were finally discharged on antibiotics at about 12.30am with an ear infection (possibly linked to some viral infection picked up while in hospital). We finally made it to bed by about 1am, and then yep...up at 6 for a full day back at work on the Friday. At that point, the Saturday party was also cancelled with Nate not being well.
So that was our week. Not the best of fun, but thankfully Nate is now on the mend, and already back to his normal cheeky, gorgeous self. We are still awaiting the final results of the EEG, and an upcoming brain MRI, but fingers crossed that comes out okay. Here he is back at home, and enjoying a few more of his presents - a lovely quilt from Granny, and a balance bike from Mummy and Daddy :-)
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