Saturday, February 4, 2012

Good bye Graz, Hello London…

Our last day of hospital at Graz felt different to all the other days, like when it’s your last day at school before the holidays. A very relaxed, happy feel about it. It was just us and John’s family at the play picnic. John was also having his last day and was ready and packed to leave for home in Ireland. We all just sat around and watched the boys eat and play together. We were all a bit nervous about leaving yet at the same time excited about how different our lives would now be. We will miss Gillian and Patrick, John’s parents; it was so nice to make friends with people that we could really relate too. We said our good byes and finalised everything at the hospital and set off to our hotel.

Max still has his tummy tube and will for the next 3 months, on advice from the hospital. As much as I hate Max having the tube/PEG, it’s a comfort for us to leave it in for now. If Max continues to eat and drink as he has been over the next few months, (which he will J) we then take it out and let the hole close over and be gone forever! He will also have to be increasing his intake. Max left Graz eating puree and drinking water. Today it’s been almost 2 weeks since we left Graz and he is now eating almost anything! Last night he ate steamed broccoli, roast chicken and has started drinking milk!  I’m so looking forward to getting him home and having my kitchen to make him all sorts of different yummy foods.  It’s quite limiting being away from home as to what we can offer him. It also takes a long time for Max to eat and drink at the moment, which again will be easier when we’re home. He eats small amounts but often. Almost like all day grazing. When we’re at the hotel we always have a variety of foods around for him to help himself to and every 2 hours he’ll let us feed him while he watches some TV. When we’re out and about we give him different things to hold and nibble on in the pram. I find myself always thinking of new things that he can hold himself and that are easy to eat. Prawn crackers are great as they dissolve in the mouth. I’ve mentioned before about how for now we just let him have any type of food he’ll eat. It’s all about creating pleasant oral experiences and learning how to bit, chew and swallow. Nutrition comes later. Chocolate is another good one, as it something he can hold in the pram, melts in the mouth and is high in calories.

One thing that is challenging with Max though is that he’s not supposed to eat any food high in fat due to his lymphatic disorder. So at the moment, as he doesn’t eat a lot yet, we are letting him eat anything but encouraging low fat foods the most. I’ve replaced the custard he was eating with a low fat soya bean custard, which tastes great! It just makes it hard to get the required calories in to him. So if anyone has any ideas of low fat, high calorie, easy to eat food I’m all ears!
We are absolutely ecstatic about what Max has achieved at Graz in such a short time! Every time I watch him eat I’m smiling. Seeing him eat happily, hearing him actually ask for food, packing him little snacks when we go out…It feels so weird, good weird! So with Max now eating and drinking we started thinking about what we had to do next.

As soon as we got back to the hotel after our final day at Graz hospital, I contacted Prf H, whom we had previously organised to meet up with in Amsterdam.
As we were unsure how long Max would take to wean at Graz we did not have a concrete date or appointment with Prof H, we were just instructed to contact him once Max was finished with the wean. Prof H is the founder of what is thought to be Max’s condition. This condition has been named after this Professor and has only 30 known cases worldwide, none in Australia. There is no defining test for the disorder, just that one of the main symptoms involves a faulty lymphatic system, which Max has. We know this as when Max was 8 months old he had a test done where they injected dye between his toes into his lymphatic channels, to watch how it travelled through his body. For you or me it takes about an hour for our lymphatic fluid to travel through our lymphatic system. For Max, after 8 hours the dye showed that the fluid had only travelled half way through his body. His channels are extremely narrow and congested and the fluid seeped out into his skin tissue. This is why Max was so sick when he was born. His face was like a balloon, his chest cavity was so full of fluid that for months he required permanent chest drains to drain the excess fluid so his lungs could expand and grow. Now his legs are affected and his face fluctuates, some days it’s swollen and others he’s ok. This is why he requires a low fat diet as the fats congest the channels further.  So we were very keen to meet Prof H to see if he thinks Max has the condition he founded and if so learn more about it.

Prof H’s PA called me back to say she will set up an appointment within the next few days. As soon as I got off the phone we started getting ready to head out the door and book our flight to Amsterdam.  Just before we left the phone rang, “hello Mrs Reynolds, I’m so sorry to tell you this but Prof H has changed his mind and decided he will not have time to see you after all. He also feels there is nothing more he can tell you than you already know about Max. He does not have any answers for you and even if he could see you, you and your family would need to spend 2 weeks in quarantine before entering his clinic as you have come from abroad. He cannot tell you what Max’s condition is or why he has it, as any testing he would recommend have already been done. Again I’m very sorry.” My heart sank. I had held so much hope in seeing him. Why I was only told this now!  I pleaded with her for a while, saying I don’t expect all the answers, but if anyone knows anything at all I thought it would him! I said we were willing to do whatever it takes. It was still a firm no.
I just sat for a while… thinking, angry, confused, let down, upset and helpless. Then I picked myself up and thought, ok it’s not meant to be. So I got on to calling the specialists in London.

Wow what a difference. They had been waiting for my call and said how eager they were to meet Max and do what they can. They had a team prepared and all had read up on Max’s history. So off we went and booked our flight to London for the next day.
We had a bit of time in London before our appointments at St Georges Hospital, which was great as Steve and I were exhausted. The first few days we just rested and concentrated on feeding Max and getting him settled in another new place, then we took a bit of time out to explore beautiful London. I personally think the whole last year had just caught up with me. The fundraiser and anticipation of getting to Graz, then going through the actual treatment with Max, such a roller coaster of emotions. I felt like I could finally breathe again. Max is eating and I know he’s just going to continue to thrive.
Micky Mouse on southbank London
Feb 1st we went to the hospital and met the team. They are just wonderful. They said they have seen four other cases like Max where the child was born with lymphatic hydrops! They said two of the children died as babies and the other two improved and got better and better as they got older. They were all born with an underdeveloped lymphatic system but the 2 that got better, their lymph system continued to develop with age. This is what they feel is happening with Max, that he will improve as he gets older. This news was a huge comfort and offered new hope. Never have we heard anyone say they have seen other cases like Max. They said they don’t have a name for the condition as it relatively new and incredibly rare, but with our permission would like to continue to study Max’s case along with the other families. They also ordered many new tests that Max has never had done. They gave us management advice and explained everything about the lymphatic system and how it works. They also said they have been in contact with Prf H in Amsterdam and they DO NOT believe he has the condition that Prf H decribes! I am so glad we came here to London and have this team on board. They are so interested in Max’s case and really keen to find out as much as they can about how and why this has happened, what they can learn about it and how they can help us help Max. They are preparing a research investigation on Max and the other children like him and will be in contact, and work with and advice, our doctors back in Australia.
We spent a few days at the hospital and they ran a few of the new tests, but most of the testing can be done and followed up back home under their instruction. I know we don’t have an absolute answer, but to know we have these experts doing everything they can, to hear they have seen other cases and the children get better is more than we expected! I just feel things are finally looking up and Max (and us) may really start to be able to lead a wonderfully, ordinary, normal life.

We are heading home this week after completing our very successful ‘Mission for Max’. Not a day goes by that I don’t think of all the wonderful people that supported our mission and helped us achieve so much. Hundreds of people helped us do this, friends, family, business and complete strangers.  We could not have done this on our own. What’s that saying about it takes a community to raise a child?  For our community and support network this really is an understatement.  All the love and messages of support from home have also meant so much to us and really helped get us through the tough days. I feel that saying thank you is not enough. So I hope that all of those that have helped in some way or another have read these blogs and felt a sense of pride in what they have helped achieve. I can’t wait to get home and starting a new life!
Mmm num num chips
happy little vegemites

Hats off to you all that helped me!