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

Update on Max

Dear all,

I wanted to put on Max's blog how he is doing as lots of people have been very worried and asking after him and us.

Max was airlifted to Yorkhill Sick Childrens Hospital, Glasgow on Sunday evening after being ill with a cold/cough for over a week. He was struggling with his breathing on Sunday night (21st Nov) and we took him to A&E. Max is now in the Intensive Care Unit on a ventillator having contracted RSV (bronchiolitis), Adenovirus and unfortunately also re-herniating.

Max had been unwell with his cold/cough but the Dr on the Wednesday and his surgeon on the Friday both said he was just suffering from a particularly bad cold. By Sunday it was obvious he was really tired and struggling to breath.

Its been a really hard week for Max although being ventillated, sedated and kept completely still has given his body time to try and fight the virus's. The Dr's have been amazing and have tried to keep us positive whilst being very honest with us. He was changed today to another ventilator and he seems to be doing much better, trying to breath on his own and even opening his eyes for a split second :) We can't wait till they let him wake up properly, which may only be in a couple of days.

It could take another few weeks for him to rid the virus's and get back to his full strength which is when they will discuss dates for his operation (which he will need for his re-herniation repair).

He has done us proud again and although we have a long way to go they are very pleased with his progress.

Thanks for all your texts and emails but its just a bit easier to update on here than do it individually.

Love
Simon, Katie & Max
xxx

Max's 1st Year

Video which I put together of Max's 1st year - he's done extremely well :)

1st Birthday - 02/11/10

Max turned 1 on the 2nd November - I know every parent says it but I honestly don't know where the last year went! He is doing so well and has progressed so much better than we ever could have hoped. We had a party for him and invited some friends, I think he was a bit overwhelmed by the noise and attention but we certainly had a great time. It was lovely for people to see how far he had come and we played a short video which I put together of his 1st year.

He was certainly spoilt and got some lovely clothes and toys from family and friends - with Christmas approaching we're a bit stuck now for ideas!

We are very excited to be spending our first proper Christmas together as last year I was ill and unfortunately Max's trip home was short lived and unexpectedly he went back into hospital on Boxing day for over a week :( Still, we never dreamed we'd spend last Christmas day all together at home, it was amazing to wake up with him beside us in his moses on Christmas morning...and to dress him up in his Christmas day outfit!!!

Holiday to Spain

I've been quite rubbish updating my blog so I apologise if anyone still checks it - not keeping my audience am I?!

We went on our first holiday abroad with Max at the end of September. We initially thought we would not manage given all of Max's medical supplies but my cousin Daniel, works for a freight company and he helped us organise to send all the supplies to the apartment - it made things so so much easier and it was brilliant to arrive and have all his things there :) Max was great on the flights there and back, managing to sleep in between Simon and I and playing with his toys on the seat tray when awake.

The weather was great barr a few cloudy days and Max handled the hotter days no problem, we just took him in the pool which he loved.

When we finally got home we got the best reaction when he realised where he was, I never thought he would really have thought much about it (being a baby) but he got so excited and animated, babbling away - he seemed to recognise his surroundings and it was so cute to watch him.

Given the trip went so well we will definitely be looking to head away again in the New Year, maybe further a field this time......

"What a difference a year makes...."

....we can hardly believe its been just over a year since my 20 week scan and THAT diagnosis! We have all come so far especially Max who has proved he is such a strong little boy and obviously very determined. Max is now prity much sitting up, he is still wobbly but we're there, and at 9 months old (today) I think that is quite an acheivement.

Our trip to RGU to help the students went very well. They were all lovely and asked lots of questions which I was more than happy to answer. Max was very well behaved and just loved the attention, smiling and showing his two new teeth through bubbles of drool! We met Lyndsey, the 18 month little girl with CDH and she is generally doing really well although is awaiting another operation as she has re-herniated. She is such a happy wee thing and has even started to walk, which was lovely to see. I have kept in touch with her mum and plan to meet up with her shortly. Max even got a little present as a 'thank you' from Mo.