Operation over......

Max's operation on Tuesday went even better than we could have hoped for. He was in surgery for 6 hours and instead of going to ITU where he was to be ventilated he went to HDU and was given only oxygen prongs. Simon and I were amazed to see him looking so well given such major surgery. The surgeon came to see us later on and said that his smaller left lung actually looked quite healthy and that his diaphragm also looked really good, so much so that they contemplated not using a patch to close the hernia (although they did land up using a patch). Max struggled a bit as he came round, he was very aggitated and disorientated and not even Simon or I could calm him down. Following his post-op x-ray the team noticed that part of his left lung was collapsed and decided to put him on CPAP, which blows air in through a tube in the nose and helps to re-inflate the lung/s. The CPAP did its job perfectly and although the lung is not yet fully inflated they removed the CPAP today, along with his epidural and stopped his morphine. He had oxygen prongs for a short while but also had these removed tonight. He has a new wound on the left side of his chest which will need regular dressing changes and checks for infection, luckily he doesn't seem to be having any pain there and is already trying to get moving in his cot.

The plan is to be moved to the ward tomorrow and then within a week we could be home - although it all depends on the surgeon and his team.

I honestly never thought it would go so well, its still been very hard, tiring and emotional (well more for me coz I blurb all the time!) but the outcome could not be better and we are so incredibly proud of Max :)

Looking forward to getting home and getting out and about!

xxx

I have attached a picture of Max going to surgery in the 'theatre car'

Max on CPAP

3 days to go.....

Well, we've made it back down to Glasgow and settled into the flat, Max is being bathed by daddy whilst i'm having a glass of wine updating my blog :)

We had a few family and neighbours pop in past yesterday to wish us all good luck which was so nice although I started feeling very anxious as the reality sets in. We wish we didn't have to be here at all but the thought of Max being better and us starting to do things as a family again makes me quite excited. We have really missed going out and about and doing the normal things, its been this way since November so we honestly can't wait to get going again.

Max is due into the hospital on Monday afternoon for his operation first thing on Tuesday morning. I will stay the night before because although he is familiar with hospitals he is so much more aware now and needs one of us with him. The good thing is he has no idea whats about to come and so its just Simon and I that have been dreading the 8th - Max has been his usual happy smiley self and that sometimes makes it harder as outwardly he looks so well.

Tomorrow we plan to have a nice day together and take Max to the park ect although I just want the day to pass so we can get on to the next and get things moving.

I never imagined parenthood would be such a rollercoaster but even at this point its the most rewarding job we could ever do.

Thanks again to everyone for their support and a special thanks to Max's friend Murray (and his mummy Emma) who made Max the cutest 'Get well soon' card complete with cotton wool balls and lots of paint!!!

xx

Max with his daddy

Back in Aberdeen :)

Simon and I made the decision on 7th January to come home to Aberdeen for a long weekend. We checked with the surgeon at Yorkhill who said it should be fine given Max's operation was not likely to be anytime the following week. It was amazing to get home after almost 7 weeks away. Max seemed so excited when he realised he was back in his house and even more excited when he saw some familiar toys! Things are far from normal but its made life more bareable now we are home and Simon can get back to work.

In general Max seems really happy and back to his old self, he is breathing a little quicker given the congestion in his chest but to look at him you would never know how much he has come through.

We now have a date for his hernia repair of 8th February - seems a million miles away but hopefully in this time Max will continue to get better as he still has some secretions on his lungs making him sound a little wheezy. He has put on weight, some would say 'chunky' which again is good for him going into this operation. As the date is 4 weeks away we decided to stay in Aberdeen until a few days before the op date.

Written down, this journey sounds a hundred times less painful than its actually been and I know we're tired of all the ups and downs and not knowing whats going to happen to Max next but then you find the strength to keep going because thats the least you can do when he's shown what he can do :)

We would like to thank you all again for all the kind emails, texts etc it really helps to know we are thought of.

Wishing everyone a happy and healthy new year.

xxx

Op postponed

We took Max into the hospital today to be admitted as planned only to be told that due to an outbreak of swine flu and RSV there was no bed for him in the intensive care or high dependancy unit. I had worked myself up so much for this but when they said we could take him home I couldn't decide if I was happy or not??? Simon was just happy to get out of the hospital I think! No idea whats going to happen next, as its near impossible to schedule the op given the situation i'm not sure if we will be coming home or not. I'm desperate to get home with Max but if we head just now it only means this whole op looms over us all...and then we have to come back down. I'm also worried Max starts to struggle, i'm totally confused. He is still showing after effects of the RSV so maybe it was not the right time anyway, although they did say this may be because of the organs in his chest - so may questions???

Anyway, Simon has gone out with Max to get some wine as we're already fed up thinking about it all - so we'll drink instead!

Will update when I can.

Simon, Katie & Max xxx

p.s - In the photos, Max at the swing park yesterday.

Christmas in Glasgow

We had a great Christmas day with Grandma & Grandpa. Max got lots of lovely presents and was very excited to rip all the paper off - infact he was happy to just play with it and some boxes, typical.

Max now has his operation date, so he will be going back into the hospital on 5th January for his re-herniation surgery on the 6th. Simon and I just want it to be here now but at the same time we don't. Max is so happy and chilled and to put him through such an invasive op is hard but he needs to have it done as leaving it is also life threatening.

I hope you all have a lovely New year and I will update when I can on how Max is doing post-op.

Katie xx

Max out of hospital 17/12/10

Max got out of hospital on Friday, 2 days short of a months stay :)

Its been an incredibly tough time for the 3 of us, I really never dreamed we'd be back in this position a year on. I think with Max doing so well health wise I really thought we'd got off lightly with his CDH (even if he didn't eat) but we hadn't realised just how susceptible he would be to Respiratory Syncytial Virus (RSV) which causes respiratory tract infections in children with other health conditions but also in healthy children.

Simon and I are feeling exhausted, excited to have Max home but still exhausted at the prospect of him having such major surgery again. Its hard to celebrate Christmas with everything I have going on in my head, I just want to fast forward to his operation date and get things moving, and then take him home to his own house and start again where we left off.

The flat we are in is ideal and I have tried to make it homely but its not home, I guess i'm feeling a bit low just now - to top things off Simon arrived home at lunch to find the house leaking from the front door and in the front room all over the carpet, furniture etc, its one thing after another!

Emma came down yesterday to help me out as Simon is back at work (when he's not cleaning or drying out the house!) - she was a massive help and let me grab a sleep today and made me my dinner of mince and tatties (was so tasty)....shes the best sister and kept my spirits up (or was that the wine???) :) My mum is coming down tomorrow so i'm looking forward to seeing her as its long days in the flat.

Time for bed whilst Max is still asleep.

K xx