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

Max gets trip home!

Max got a 2 hour trip home on Monday which was amazing for both of us. Grandma was at the flat to meet us and it was lovely to have her there to help out and to keep me company :) I was hoping to get Max out of hospital on Monday and everyday since but on going in to see him this morning i've been told again he is still not being dischanged. I was pretty hacked off (understatment!) but when I take him back today I am going to ask if we can discharge him and come back for his drugs at the specified times (i'm desperate to get him home and back to some sort of normality).

Simon coming back at the weekend, we are bothing missing him heaps although my folks are here helping just now since Grandma went home - its a 'helping' conveyor belt!

His operation is now going to be at the start of January so we don't have too long to wait - very anxious for him but as soon as its done we can hopefully get on with life again (I never thought i'd actually miss Aberdeen!).

Simon went home on Sunday to find our kitchen ceiling had collapsed from a burst pipe. I honestly thought he was joking but he sent me a picture as proof. Kitchen is ruined from the amount of water everywhere so Simon is in the process of organising to have a new one fitted.

Max is coming on great, he is such a strong boy and he continues to surprise us all - he has done a complete 360 since arriving down here on the 22nd November - its been such a rollercoaster and its not finished yet but we're getting there.

Attached some pictures that my sisters friend Gayle took of Max a week before he became ill - she did a fantastic job and captured him perfectly.

K xxx

Max on the ward!

Lots has happened since I last posted. Simon and I have moved out of the hotel and into a rented flat as it looks likely we are now going to be here till late January early February (although this could change).

Max was moved from the Intensive Care Unit (ICU) to the High Dependancy (HDU) and now to the ward (we are on our third room in there!). He has made huge progress in the last couple of days and is now acting more like our Max. Although, he has developed a temper which he never had before and is getting used to being waited on hand and foot! As he has been so very ill we are letting him away with it...for now :) I think his temper is more frustration as his environment has changed so much in the last 2.5 weeks (I know we've been very frustrated at times too).

We are hoping to get Max back to the flat this week and will continue to visit the hospital until he is admitted again for his operation. We will hopefully get a date this week but as it will take 3 surgeons to repair the hernia they are trying to syncronise diaries.

Thanks again everyone for all your kind words.

The Dingwalls
xx