A photo story.

We've been experiencing some problems with Noah's feeding tube (sonde) and so we've swapped the old make for a new one. It seems a lot more comfortable for Noah, but there are still some teething troubles. After only 2 weeks we had to replace it. I find this an excelent time to get some nice face shots of Noah without the horrible plaster in the way.

So here is Noah looking very pleased with himself!


While we're busy preparing, Noah is happily playing watched over by Lilo.



Papa likes to educate Noah and pass on his hammer experience. As you can see, Noah has managed to hammer down all the blocks, Lilo got a bit nervous around a kid with a hammer but all ends well!


Here I am, pre-soaking the feeding tube, to make it easier to bring the tube in, and cutting the nose plaster.


All is done, and Noah is happy again. The ugly plaster is back on - but he's still cute! :)


The End!

xxLouise

We're not alone.

Trying to get the right level of care for Noah has really worn us down. I don't like to think that I'm complaining, but my mind is just running in a loop of "how can we resolve this, how can I help my family". In order to carry on I need to get all the thoughts out of my head and thanks to technology I can dump it here on our blog! So apologies for being repetitive, but it's for my own sanity! Some people might argue that I wasn't sane to begin with - but that's another story! ;)

Yesterday I found out that we're not the only family struggling trying to get care for their families. There has been an item in the Dutch newspaper AD concerning another family with similar problems getting care. The article is in Dutch, and I will say that some of the reactions from other people are not very nice, so if you get upset with these things - don't read them. The upside is that we were called by a TV program that is investigating this situation to hear our story and today a member of Parliament has commented on the article. I'm glad that this situation is being brought to light because I honestly find it scandalous.

Don't get me wrong, I am 100% grateful that there is help and funding to be had. I don't think this exists in the UK and I hadn't expected it when we first knew about Noah's condition or factored it in when I thought about him being home. I was prepared to sell our home and live in a smaller place on a lower income, that's what equity is for, as a backup for tough times. I also expected it to be hard work for myself, but I never expected Noah to suffer.

Luckily I don't live in the UK, I live in the Netherlands. Thankfully the Netherlands worked out that it's better for everyone if a long term ill patient is cared for at home. It's also A LOT cheaper for everyone. It allows beds to be available in the hospital, it keeps health insurance costs down, employs local people, allows medical people to also work flexible hours and close to home. Plus best of all, as a parent I get to bring my child home. By paying the money out it allows people the flexibility of choosing their carers, the people who come into their home, instead of having to go into an institution or having a faceless company send whoever they can employ on minimum wages whilst maximising their profits. We've all seen how privatisation has lowered costs but also the quality of service. Again, that's a separate discussion.

The difficult thing for me, and Thijs, to come to terms with is that Noah IS handicapped. It's a terrible word to have to tag on to any person. I just can't say " I have a handicapped son". I rarely think it, mostly we think of Noah as having difficulties that are temporary and he will grow over them with training and help and medical intervention. But we never really call it a handicap. When you ask for assistance in caring for your son, you have to list his handicaps and give detailed descriptions of absolutly everything that he has problems with. Doing this is a massive punch in the face from reality.

I shouldn't have read some of the comments after the news article, I am one of the people that get upset by thoughtless comments. So, unlike what some of the comments are suggesting, we don't do this willingly. We, (and I can't imagine any other family doing it either), are not making a profit from the disability of our son but we're trying to make sure that he gets the right level of care so that his quality of life is equal to that of a child that doesn't need care. It isn't, and it shouldn't, be easy to qualify for this money. But once you do qualify for this money there shouldn't be a 6 week never mind a 6 month delay in sending it out. There shouldn't be quibling over how much money is too much - as long as it's cheaper than what it costs to keep that child in the hospital, then pay the damn money out!
It's a long hard slog with among other things, doctors letters and copies of your medical files before you can qualify for this assistance, it's not something you can cheat at. To my way of thinking, if you suspect someone is exagerating then go and visit the house situation. Don't sit behind your desk delaying and delaying in the hope that the family give up! God forbid that anyone should need this money, but when they do, please don't make the families life a living hell by denying their loved one the help and assistance they are entitled to.

When nursing care is here, Thijs and I don't sit around sipping Pimms and being massaged by nubile young things! Ha! What nursing care gives us is the opportunity to be Noah's parents, we can play with him and just do normal things without worrying about suctioning or preparing medication, or a hundred and one other things. We can just enjoy being with Noah.
The other great thing about having a nurse in the house is that we have a medical expert on hand to ask about the things that worry us about Noah.
They are also experienced in navigating the medical world, there are so many departments and specialists we have no idea where to start looking for help and this has in the past wasted so much time and cost so much pain for Noah.
All these are great plus points, but the down side is that we're still living our life in public. I thougt it would end after the hospital, but we have no privacy. We do it for Noah. It is a luxury, we're greatful truly we are, but it's not fun and we do it because we have to.

We started writing this blog to share our family news with the family. When Noah was diagnosed with CHAOS, we wanted something positive on the internet regarding this syndrome to give hope to other families that get this diagnosis. We've tried to keep it real, and positive. I don't write this for sympathy because to be honest I think we're in a very luxurious situation. In America children are abandoned in the IC unit because the parents can't afford to look after their child. Thank God that isn't the situation here... yet! I guess what I would like is understanding. I love looking after Noah, I'm proud and happy that I can care for him. The same as any parent, we want the best for our son. At the moment that means 80 hours of nursing care, he has a right to it and we want him to have it. We will fight to our very last breath until he gets it, and no faceless administrator in a zorgkantor will deny him his rights.

Ooooh, my Scottish blood is stirred now and feel like screaming "Freeeeedoooooom!", (just like William Wallace famous for leading the Scots agains the evil English to gain their independance and freedom), wearing tartan and maybe having a small dram of whiskey, or two! In other words, I shall lighten up and post some good pictures to compensate for the ranting. :)

Louise

So what's keeping us so busy?

You may have noticed that the regularity of blog updates has dropped off considerably since Noah has come home. So I thought I would explain exactly what's keeping us so busy.

Taking an intensive care baby home involved a lot more than we were prepared for. For me it's meant that I have to wear many hats, or loosely translated, learn to cope with different situations by using different skills.
There's my mother hat, where I'm just loving and enjoying being with Noah without the worry of care giving.
There's the nurse hat, or the care giving by taking care of his trachea canule, administering medicines, inserting feeding tube, monitoring his condition etc. etc.
There's the personal manager hat where, together with Thijs we are planners, employers, budget controllers, coordinators and inventory controllers.

I admit that I dislike the administrative side of caring for Noah but at least it's straight forward. It's been a challenge and I've had to learn some new skills, plus I'm learning that forward planning is not just nice, it's essential!

The actual caring for Noah is incredibly busy but it feels good to be able to do it for him. Both of us from the start wanted to learn how to take care of him, so that Noah could receive consistent care and we could feel that much closer to him. We're both quite proud that we can do so much for him. I just wish I was a bit more confident in my abilities.
What I mean is that I do believe in myself as a mum but it's tough to be the carer because it's literally on the job training with a very steep learning curve! There are no reference books, there's just your own judgment and of course Thijs is always supportive and we're able to bounce ideas off each other. We're always aware that the consequence of getting things wrong is that it causes Noah pain or illness so that's what makes it quite daunting.
Another aspect of taking over Noah's care is that as soon as Noah masters one developmental milestone, there is always an "expert" on hand to tell you he's behind in another area. Which in fairness is their job, they have to see the problems in order to provide a solution. Lack of sleep and high stress levels don't make you a very rational person though! I can never really know if I'm doing a good job because there is nothing to compare it too.

I know that Noah is a lot happier at home, but I was not really that certain that it was good for his health to be home or if it wasn't better that we just arranged 100% nursing and that I went back to work. Let me explain why I thought this.

Because CHAOS is a syndrome, we find that it's all about keeping a balance - ensuring Noah's energy is distributed evenly between all the different developmental areas whilst not tiring himself too much.
For example, at the moment we're training Noah's lungs to be able to breath off his machine, whilst at the same time training his stomach muscles to be able to breath deeper, while also trying to get Noah to eat real food so that he gets enough energy to build muscle and strengthen his lungs so that he wont need a stomach feeding tube, which means training Noah to not be dependent on his corset in case he does need a stomach feeding tube! Gaaargh!!! Everything is inter-dependent so my usual method of assigning priorities doesn't seem to work - these are all priority one.
As you know, Noah can only have the operation to remove the blockage in his throat when he can breath 24 hours on his own, without his machine, without oxygen support.

So food for Noah equals the energy he needs for all the growing and healing he needs to do, but since Noah came home we've been really struggling with trying to get food into him. He has his feeding tube but trying to get his milk to stay in him is an uphill battle. After 8 weeks of diarrhoea and projectile vomiting and no medical answers we suspected a sensitivity to his milk. It took a long while to find a suitable food but we hope that we've found it. Noah stabilised for a month or so, although we still had to deal with excessive gas which produces vomiting but we thought that was due to him swallowing so much air as he is sucking his fingers so much due to teething. However the situation changed these last 3 weeks and now we have constipation. It's been a real challenge to get medical people to understand why we were so concerned. At first I thought it was that my spoken Dutch wasn't clear enough. Now I realise that it's just conflicting styles of receiving and delivering information. With the help of one of the nurses that takes care of Noah and a sympathetic doctor, we've got appointments set up with a Logopodist (specialising in feeding) and a dietitian.
Yesterday we went to a different hospital to treat Noah's constipation. They took a routine X-ray to confirm constipation. They mentioned that Noah has a hernia in his gut but since they were not familiar with Noah, they wanted to investigate further. We're told not to worry, (hahaha!) With this many people working on this problem I hope that some light can be thrown onto why Noah has so much trouble with his food and best of all would be if there is an easy solution for it.


Next to the number one priority of getting Noah off his machines and breathing for himself, what's almost just as important to us is that Noah is enjoying as normal a life as possible. This means playtime, getting outside for fresh air, interacting with others and leaving his world open to all possibilities. Are there enough hours in one day for all this?
You can see that trying to get all this right, and knowing the cost of getting it wrong, that it would be easier to hand it all over to professionals.

Unfortunately it's not just caring for Noah. Sometimes it feels like we're taking on the whole world just to get the right treatment, equipment and correct level of care for our son. As if the stress of your son's illness were not enough, there is the burden of fighting bureaucracy on top of it. To be honest this can be crippling at times. I feel like we're trying to do a good thing. Our son is home, which is best for him and also good for the hospital because now there is an ICU bed free for a child that may need it.
As a family we decided to have a child, there are no guarantees and we accepted that. We've gladly sacrificed for Noah. Wherever possible we've taken responsibility for our family. But there are some areas where we need help. We desperately need help. Thijs has had to fight and fight and is still fighting to get the level of care that Noah is entitled to. We're lucky, really lucky that we've got good people trying to help us, but we're close to despair because it doesn't matter what we do, nothing seems to move these administrators. Giving up isn't an option but this costs us energy that we just don't have to spare.
It's a terrible feeling to be so helpless and to have to rely on a government body for compassion for your situation. I do not understand why no one has come to our home to assess our situation in person. If Noah's health were not so complicated then he wouldn't need so much care, which would mean that it wouldn't involve such a large sum of money (which by the way is set lower that what is actually costs to pay for the amount of care he needs!). So the more care a person needs, the less likely they are to get it, unless they are institutionalised and then it will be paid out.

Putting Noah back in hospital or in an institution is something we will never seriously consider. The hospital was too traumatic an experience for us to ever volunteer Noah to go there just because we're too tired.

I'm learning that it takes a lot of belief in yourself, trust in your partner and digging deep for reserves I swear we never knew we had to take care of our son, Noah. I've learned so much, not only about myself but also about Thijs, and we're much closer because of it.


So what turned the tide and convinced me that we're doing a good job? It sounds so simple when I write it down, but it was our holiday at the GretaBonteKoe. Thijs and I got some sleep, and some rest. We had time. Time to evaluate what we'd been through, where Noah had come from and how far he's come. We had time to discuss our thoughts and ideas and we realised that although it's been hard, we've actually done OK, in fact we've been pretty spot on with our ideas about Noah.
All this time we've been running from one emergency to another, struggling with our exhaustion and just keeping on going, we hadn't had the time to really evaluate our situation.
I cannot really express how it felt to walk downstairs and see Noah sitting outside in the sun laughing and looking at the cows in the fields and the other kids playing. Such a long way from lying in a hospital bed with tubes and drains in him. My heart felt so full of joy and amazement at our wonderful Noah, and that's the moment when I started to feel a little bit proud of Thijs and myself. I know you're not supposed to admit to feeling pride, but I can't describe it as anything else.

A lot of different "experts" predicted dire physical handicaps for Noah, we dared to hope for a different outcome and thankfully Noah has busted a lot of those predictions. By us not imposing limits, and having hope we helped Noah and eventually he will prove all of them wrong.
One of the most important things I've come to realise is that Thijs and I are the experts when it comes to Noah, everyone else is just making an educated guess!

Taking care of an intensive care baby is a huge investment, but the return is enormous. The joy of sharing that sense of achievement with Noah and Thijs is something I can't describe. All I can say is that this journey that our family is on is scary, tiring, exciting and amazing. What a trip! I wouldn't miss a second of it. But if anyone wants to lend a hand, don't let me stop you - especially if it involves taking on the zorgkantor! :)

Spare a thought for Kalmin

Kalmin is a little boy who lives in America who was also born with CHAOS. His mum and dad, Marci and Paul have been in touch with us throughout our journey with Noah.

Today Kalmin is having his reconstructive airway surgery. Please spare a moment to pray for this family and send them your positive thoughts.

Our hearts are with you Kalmin.

Noah, Louise & Thijs

Update: Kalmin's surgery went great - he's now in recovery and hopes to be home by Wednesday.

The running joke of burocracy...

Hi everyone,

Another episode in the running joke of administration - Dutch style. As you may remember we had some trouble (to say the least) of convincing people before hand but we thought it was all sorted now... How wrong can you be.

I'll first explain a bit about how it works in the Netherlands, or more accurately how it is not working for us at least. If you are chronically ill or handicapped you are entitled to get help. The amount of help is dependent upon how much help you need doing your day to day things, compared to a normal person (or baby/toddler in our case). You have to apply for the help, and your case gets reviewed by a specialized institution, the CIZ. Now we had some trouble with them, getting the right amount of care, as they underestimated Noah's condition.

The CIZ writes a document stating how much help you are entitled to, and specifies the number of hours of care, or home cleaning help or transportation or whatever you need. This document goes to the next bureaucracy, the 'Zorgkantoor'. They then ask you if you would like them to provide you with the care (natura), or would prefer to arrange everything yourself.
We opted to arrange stuff ourself, so we can pick nurses, and arrange when and how the care is done. Also this allows us to pay Louise and myself a bit for the nursing services we do ourselves.

The usual procedure is then that the amount of hours is multiplied by an hourly rate (more for nursing, less for cleaning, etc..) and the grand total is your budget to hire nurses and carers with as you want. Here we are now running into trouble.....

To make sure that the healthcare system is efficient, you can only ever get 300,- /day, because otherwise it would be cheaper to send the patient to the hospital. Fine, fair enough. Unfortunately Noah cannot just go into any hospital, he needs an intensive care in a specialised university hospital. Which costs about 1500,- euro/day is what the nurses there told us.
We told them this, so they upped our maximum to 350,- euro a day, so we would get all the hours paid to us.

Now we are getting a lot more hours, because finally the CIZ has sorted out their paperwork, and made the right estimation of what care Noah needs. They send this new document to the zorgkantoor, who send us a new budget, taking into account the maximum of .... 350,- euro/day......

So the net result of writing letters, getting doctors reports, having hospital staff, nurses and quite possibly God himself calling the CIZ to get more care for Noah is exactly......0 (yes zero) euro/day.

And of course the @£$%heads at the zorgkantoor tell me that i should have opted to let them provide us with carers. Like we want even more people in our house. Like we would want to turn Noah over to people who got hired at the lowest possible price by idiots who work in that office. Like we we want to have a seriously ill child instead of a healthy one.

All I have to say is, don't leave me alone in a room with one them and a sharp object. Or a blunt object. Or even a stapler. Don't leave me alone in a room with a bottle of whiskey either by the way.

Any way done boring you all, so I'll throw in a few good bits. Noah is getting his first molars (kiezen in Dutch), the first two on the bottom are a bit through. You can see one in this picture, if you can zoom in far enough.


Of course it is getting difficult to find a picture without his hands in his mouth. Still, he sitting better and starting to stabilize himself with his hands when he threatens to fall.


We got it! A smile on camera!



Since we are now sitting on the floor on his blanket very often the couch is empty for Lilo to occupy. Of course in style, as a proper princess. We knew those lambskin cushions would prove useful.


So enjoy, and we'll update again soon,

Thijs

A busy week!

Oma and Opa's 40th wedding anniversary, our first holiday, Noah's first birthday and Papa turns 35 - whew!
I could write a long story about it all but instead, for now, I think I'll just add some photo's for you all to enjoy .

Enjoy!

xx the Drostens

Big smiles at the GretaBonteKoe!


The Ikea Bakfiets (boxbike)!


The puzzle is complete so a well deserved beer!


Noah relaxes while oma and opa greet their guests!


Happy Birthday Noah - 1 Today!


A bed filled with presents - I could get used to this! Thank you everyone :)




Entering the zoo

Noah meets some fish, "hello Dory!"

After a busy visit, the dudes chill out together.

"What a great birthday!"

Noah picking up music tips on papa's birthday from Baart.


How can we have a blog update without a bath video?! Impossible! Here is Noah in the bath, splashing the nurse at the GretaBonteKoe. Mummy is standing well back out of range! :)