Hi all,
We came down to earth with a bump yesterday. The ENT (KNO) doctor together with the lung doctor took a look inside Noah. They found that the lungs were soft and prone to collapsing, (malacosis), making it difficult for Noah to absorb oxygen, which they believe probably caused his episodes. There is no operation or medicine that can cure this. The hope is that as he grows so will his lungs grow stronger, as ever nothing is 100% certain but it's hopeful. This, along with the other complications he has, is predicted to take around 2 years. We're not sure whether this means 2 years on a machine, 2 years with a canule or a variety of other scenarios that have been whizzing around in our heads since we got this news.
In fact things are so uncertain for us that we've started to discuss in earnest with the hospital what are the options for Noah. Lots of information has been given verbally, some of it is contradictory, but we have nothing as yet in writing. We would like to be given an overview of Noah's condition, his treatment plan, a prognosis, a time line and a defined role in his treatment. This is all very bureaucratic but we hope by defining the borders, we can help lift this feeling of being in limbo. We're lucky that we're dealing with people that want to help us and so we are sure this will have a positive outcome. It does feel a bit overwhelming at times trying to find who is the right person to discuss the different aspects of Noah's care, but we feel that we're making some progress now. Our goal is to secure a more proactive and holistic approach to Noah's care and to get him into as normal an environment as possible as quickly as possible.
As for Noah himself, he's still a happy little guy. He smiles and plays and is always happy to see people. He's incredibly brave when they need to take his blood or insert an intravenous infusion. He's growing in length, gaining weight and developing like any other child (apart from things like lying on his belly and being able to vocalise of course). It's so easy to forget that he really is very ill and so it's such a shock when things like these episodes happen. We don't want to treat him like a sick child but rather we aim to stay positive around him and encourage him to develop as much as he can, and so far - so good!
So all in all, it's a lot to take in. We're trying to find out what this all means and it's difficult for the doctors to predict this because not only are we as humans unique but in this case Noah's illness is also unique and very little is known about it. I know that this is not all good news, but I hope by sharing it all you realise it's not all bad for Noah either. There is always hope, and miracles. Let's face it, Noah being here and his capacity for happiness is a huge miracle. He is still the best thing to ever happen to us and we're very grateful.
As ever, please keep Noah in your thoughts and prayers. Thanks to you all as well for your support and comments to us. They really help us be there for Noah.
The Drostens
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8 comments:
wat een vervelend bericht! zeker als het allemaal niet duidelijk is hoe of wat er allemaal kan gaan gebeuren of moet gaan gebeuren en hoe lang het duurt.
everyday we think of you, specially with our new diet:
monday: bigmac menu
tuesday: quarterpounder menu
wednesday: happymeal x4
thursday: big & tasty menu
friday: cheeseburger menu
saturday: salad prut
sunday: Big mac menu
Hallo weer,
Inderdaad een heel vervelend bericht. Zijn ze daar nu met een kijkoperatie achtergekomen? Dat was me niet helemaal duidelijk...
We hopen dat jullie snel meer duidelijkheid krijgen.
In one word: Gadver!
Two years? You've got to be kidding me... I can't imagine the shock for you guys when you heard that prognosis,I just know that I was stunned just reading that.
I must say I was glad to see Noah again, he looked a lot better than the last time.
If just the doctors would give some better news, all would be fine in a short while, or at least some clarity as to the way things will be going in the future. Anyway, you guys are in my prayers, especially Noah.
On a side note: would like to try the menu Tom suggested, but I think I'd be as big as Fat Bastard within 2 weeks ;-)
Wat verdrietig voor jullie het laatste nieuws over Noah's longetjes. Maar houd jullie vast aan het vooruitzicht dat ze sterker kunnen worden. Het mannetje heeft zich al maanden door zijn leventje geknokt en we hopen allemaal dat het hem verder ook lukt. Goed dat jullie een duidelijke lijn willen hebben in de informatie over conditie en behandeling! En verder Thijs en Louise, geniet van hem, van zijn lachjes, het badgespatter, zijn blij zijn als jullie bij hem zijn. Ik geloof dat jullie blijheid doorwerkt en hem sterker maakt.
Sterkte en ik denk aan jullie.
Marijke, Doetinchem.
Hi Snod
That is very sad to hear that Noah's lungs are slow in there development but like you are pointing out he has come thru so much to get where he is and he is only now settling into him self and is showing signs of growth and wight gain and is engaging all very good signs that he will grow into his lately developed lungs (I think ???) any way I am sh-our you guys are gutted and totally disappointed after such good progress for so long. It was like you have turned a corner only to find your self back at the start. I truly do think he will come good he just needs his mum and dads love and a wee bit of Dr tipe help.
Give my love and good wishes to the big guy and I am thinking of you every day
Love you Snod
More pics coming soon (last holiday away for a weekend)
Hi guys, just did a catch up on Noah's blog! Well I can't even begin to imagine how you feel with all the up and down news of late. Stay positive, thats all I can offer at the moment; Noah will feed off your emotions and moods (as you well know). He's in the best place, with the best care and the best parents a little boy could wish for. He isn't sick Lou, he's just taking his time!!! It's a male thing! ;-)
Our thoughts are with you all,but mostly the little man. Sending you as many virtual hugs and kisses as possible!!
Mand,Pat and kids xxx
Thanks all. For Thijs and me it's all a lot to take in, but for Noah, he's just playing and laughing and doing his thing. The little git!
He's taking his time and just charming the pants off everyone, which is just wonderful. :)
Dear Drosten family,
sorry to hear about Noah's lung problems, and all the uncertainties that you all have to go through still. We wish you all the best, we admire your strength and the way you keep everyone informed. Be assured we continue to follow Noah's development, we can only learn from your experience to provide better care for others.
Best wishes from the LUMC fetal therapy team.
Dr. Dick Oepkes
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