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

Max update 2nd December '10

Didn't update yesterday as it was an awful day and we kinda felt it when we got up....

...although today been much better :) Max had been getting very agitated on his ventilator esp as they have weaned him down on his sedation and pain relief drugs. We felt it was more agitated than struggling to breath as they had also turned down his ventilator in preparation to see if he would cope off of it - so as decided they took him off his ventilator at 2pm today. He has done very well indeed and apart from a small amount of oxygen through some nasal prongs he is doing it all on his own :) The only down side is that he was still quite upset all afternoon and would just drop off before starting to cry again. Rather than being sore I think he is just hungry as he has not had any milk in 2 days as his belly was bloated so as a caution they stopped his feeds. Looks like he has a tummy bug which is subsiding now so they plan to start his feeds again tomorrow at a very small amount, but its a start. All-in-all Max did extremely well today coping with everything they did although I can't say he didn't put up a fight!

We are aware its 1 step forward and 2 back but we feel he is heading in the right direction now and hopefully in the next few days he will be moved to the high dependancy (step down from intensive care).

Surgeons plan to get Max stronger in the next couple of weeks and then consider his operation just before Christmas.

x