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

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.

Physio Progress - Gold Stars!!!

On Monday we had an appointment with Max's physiotherapist, Maureen, at the RACH. 2 weeks ago he was making little attempt to sit up and still had a strong preference to his left side but he is now sitting for short periods unaided (when he wants to that is!) and now passes toys from his left to right. We are delighted with his progress as I thought it would be a long time until he even attempted to sit up :)

Maureen has asked if we will help out some of her post grad students at RGU tomorrow. She has invited 5 mums with babies who have had a traumatic start and are at different levels of development for the students to ask questions about in group sessions. There is going to be a baby girl there who also has CDH so it would be good to speak with her mum and i'm sure share similar stories.

Picture of Max and his daddy, in his Bumbo learning to sit up.

Max at the beach

Today we went to the beach seeing as the weather was nicer than forecast - it was still windy but quite warm and we played in the sand before heading back to the car quickly as the rain came on (typical!). Max has been retching a lot less since he went back on to his continous feed over night so fingers crossed it continues to go well. So far we only have 1 appointment next week at the hospital and the rest are planned for a couple of months away - so far so good.

Max meets Kaden

Last Wednesday Max met up with another very special boy, Kaden. Kaden was also born with CDH and is now almost 3. I was put in touch by someone I had met in our surgery and couldn't believe it when we found out Kaden and his family only live 3 streets away! It was so lovely to talk with Kaden's mum and her understand everything we had gone and continue to go through. Kaden is doing wonderfully and even eats and drinks a small amount although is predominantly fed through his g-tube. He showed it off to Max and seemed quite pleased to meet someone else with one, he even asked if Max has a 'tubie', it was so cute. We are going to keep in touch as it really seems Max is following the same path as Kaden and if he is where Kaden is now down the line we will be delighted :)

Max is trying so hard to sit up, physio have given us some more exercises to try with Max as he is still a bit behind his milestones but getting there. He still has a very strong preference to his left side so his head is still a little flat but we are trying to have him sleep on his side during the night to help with this.

We are off to Ireland for a friends wedding next Friday and Max is having his first nights away from us staying with his granny and grandad - i'm so nervous but not to do with him being with my folks as they will do briliantly - just being away from him for 3 days! Still, will be good for him and us to have a change.

Dunkeld Holiday

We went on our first proper break away last weekend to Dunkeld in Perthshire. I was certainly in need of the break, especially as whilst packing in the morning Max fell off the bed and in my panic to pick him up I pulled out his gastrostomy tube! I felt awful but remembered in my new panic to plug the hole and call an ambulance. Max was very calm by the time they arrived and I felt like a bit of a fraud! Once at hospital, they put water back in the balloon and checked Max had not banged his head etc - we were home an hour or so later and on our way a few hours after that. We had a great time and Max loved going to the pool everyday and getting to stay up a bit later, he was full of beans!