Hospital Update

Hi everyone,

Just a short hospital update to let you know that everything went well.  The operation was succesfull, and the doctor has succeeded in removing the blockage in Noah's throat, whilst also saving his vocal cords. 

The doctor was pleased with how the operation proceeded.  He saw that the vocal cords were fused, so he seperated them.  The chords are not in a great condition which could mean that he will not have a good voice, but it all depends on how he heals.  He has surprised the doctors before! :) At the very least he will be able to make sound.

The blockage was indeed composed of cartillage that had grown into a disc instead of a ring. The doctor managed to open this up, and create what he described as "a decent size airway". The doctor cut away the blockage, leaving behind a 'U' shaped piece of cartilage, so he didn't need to use a piece of Noah's rib in order to strengthen his airway - the less incisions made the better!

A stent was put in the opening, to make sure no scar tissue will grow over the opening. This stent will be permenantly removed at the end of the healing process, which could take a long time; a minimum of 4 months.  It's difficult to be precise because this depends on how quickly Noah heals, (which is different for each child), and how quickly his mucous membrane grows over the wound.  This membrane is important for a healthy airway.

At the moment Noah is getting a lot of pain medication, and he is quite sleepy after his big day.  He was awake this afternoon for a little while.  It cheered us up enormously that his first order of business was searching for doekie la doek, and then to lift his leg up and pull his sock off! Business as usual for Noah :)

He came awake quite unstressed and not at all upset, and gradually drifted back off to sleep.  Thijs describes him as being quite happily stoned!

The doctor goes on holiday after the 9th of July,  so he wants to perform the first change of the stent himself, it's possible that Noah is again in theatre on his birthday - but this will mean that he can come home earlier, of course depending on his recovery. It's quite probable that Noah will have his ear pierced during this operation.  This is because the stent is anchored via a chord to his canule at the bottom, and with sticking plaster over the chord at the top. However, sticking plaster can come loose so the safest way is to tie this chord to an ear-ring.  So our little man will get an ear-ring for his birthday from the hospital! 

Thijs and I are feeling completly drained.  It's been a very intense time.  We're so grateful that it's gone as well as it has.  Thank you for all your sms's, positive thoughts and prayers.

We're off out this evening to enjoy a meal with perhaps a glass of wine or two and looking forward to a relaxing night sleep :) 

xx Thijs & Louise

 

Photo Update

Noah in his walker - he loves being able to move about and he's really good at it!




A few highlights from our trip to Wales

Welcome to Wales ... they even hung the flags out for Noah's visit.



Here is Noah in front of Caerphilly castle.



All good things come to an end ... bye bye England - yes the cliffs really are white!


I wasn't joking about the stuffed car!


Carrying all that shopping was hard work ... some just aren't cut out for it!


Highlights from Noah's Christening

You are now officially Noah Aleidus Glyndwr :)


Much happier now with my pal - Can you dig my funky Welsh dragon shoes Ties?!

With my Godparents, Tom and Lol and also my opa, mamma and Pappa.


I hat to post this one as Lol's hat is so fabulous :)



The Christening gang, apart from Wendy who's taking the photo .. thanks Wendy :)






An enjoyable lunch with colleagues. Bedankt voor de bloemen!


Aaaargh! I'm being eaten by a giant fish ... put the camera down and HELP ME!



Noah was ready for his hair cut, and he was really calm sitting like a young lad on his own in the big chair .... of course with dookie le doek close at hand!


Doesn't he look great?




Noah is preparing for the Netherlands victory at the world cup. Hup! Holland Hup!


And no photo update is complete without a bath time shoot!

We're back!

We've had no internet for 3 weeks. How did we ever survive for so long before the world wide web?

Who knows, but let us tell you it was strange. Not as bad as having to do without a shower for the first few days, but still a long time for you without updates.

We feel a bit bad, especially because we don't have a lot of pictures either. So, we promise to post a lot of pictures in the next week (s). But first what has happened the last month?

First of all we moved, and despite a few bumps in the road we are getting settled. Pretty much we moved into a building site but we had to move in as we'd reserved care, run out of budget and let's face it - there is only so long you can impose on family. As ever with most big projects, it's over budget and over the delivery date - but we're in contact with the builder to see what we can get finished with the bit of budget that we've scraped together.
Over the last few weeks most of the complicated work has been completed, or is in the planning to be completed soon. What's left over is mostly the finishing touches, which is time consuming more than difficult. One of the larger jobs that's left over is tiling our little shower room. I am very much looking forward to that being completed!
We're optimistic that we can make the place look quite finished, We're a very optimistic couple! :) The most important thing though is that it already feels very much like home.

Aside from the move we have been in contact with the hospital regarding Noah's surgery. Due to miscommunication the surgery was not arranged for the 8th, but is now firmly in place for Friday June 25th. As ever, there is very poor management of administration within the hospital. It was only due to the diligence of one of Noah's carers that we found out nothing had been arranged. Luckily our liaison team are fantastic and Christa made the arrangements for Noah to be scheduled for surgery this month - she even went in to the planning office herself to make sure. Anyway, we have an appointment now, and it is 99% sure that all will go ahead, (there has to be a bed available in an ICU then it's 100% certain).

We're just back from a short visit to Wales for a holiday / family visit. This was the first time we have taken Noah with us on a long trip, and his first time out of the country. A big event for all of us!
The trip there turned out to a big adventure indeed. We hired a bigger car, as we have to take so much medical supplies as well as the usual holiday gear, plus we had one of Noah's nurses with us, Ben, on the trip - and he took loads of luggage! ;)
The day before we were scheduled to pick up the car the rental company had changed owners and location, this meant that we did not get the exact type of car we had hoped for and there was no child seat available to rent. (Noah's car seat is bolted in our car, so we can't swap it around easily). Luckily we didn't panic - and there is always e-bay, so on the evening before leaving Thijs managed to phone around and buy a nice car seat at 6 in the evening. Not bad timing.

We took our dog Lilo with us, which involves getting her treated for fleas and ticks and a health checked in order to comply with the UK importation of animals regulations (which are very strict). This had to be completed by a new vet in our new neighbourhood. Everything seemed to go well, even though Lilo was a right 'fraidy cat in the vets office but cheered up when she had her cookie. However, when we arrived at the Dunkirk, the officials there discovered that the vet had corrected the date on the passport by scribbling it out but without countersigning and stamping the correction...... So she was not allowed to go with us. The only option given was to have her re-treated, wait 24 hours and try again. We didn't panic! We asked for their assistance and they were very kind and put us into contact with a french vet who was willing to re-sign Lilo's passport (at a 29 euro charge). Ben had his Tom-Tom, so we very easily found the vets office in the centre of the town, and Lilo was treated, signed delivered and back at the boat with a roomy 15 minutes to spare to before sailing time.

Arriving safely in Dover was a big relief, and we drove off the boat looking forward to starting our holiday only a few hundred miles till Wales, which is about 3,5 hours driving at legal speeds. One hour into our journey, an horrendous accident completely blocked the M25, and we were forced to find our way through central London without any detour signs or any signs at all really. The Tom-Tom kept telling us to turn around and get back on the M25, so that was not very useful. After what seemed like hours of wandering through London we finally arrived on the highway to Wales and could resume our journey. After 15 hours of traveling, we arrived safely. Hooray!

We had a lovely time in Wales. Shopped till we dropped. Visited granny every day and met some of Noah's welsh cousins. Noah and Lilo loved being made such a fuss over. Too soon we had to head back to the boat, which was a smooth and blessedly uneventful journey home. Apart from the fact that Ben had so many bags that we all had to breath in to get into the car! :)
OK, ok ... so apparently nobody is buying this story and you all know that it's not Ben but me that's the shopaholic .. I was so optimistic that you'd believe me!!

There was one last miscommunication. Lol called on Friday night asking "where on earth have you been, I'm leaving for my ferry in half an hour I'll be there tomorrow morning" ... Gulp! We didn't panic ... very much!
You see, before leaving for Wales we'd discussed getting Noah christened as I wanted this done before he has his operation. We were waiting for confirmation and Lol thought it was confirmed. We called the pastor on Saturday morning, who was in the middle of his summer fete, but he agreed to christen Noah on Sunday. A big thank you to all of you that could make it on such short notice, and sorry to all of you that would have liked to have come. It was an intimate service and Noah behaved very well and only got a bit grumpy towards the end, due to the heat. Tom and Lol are Noah's godparents and he is now officially Noah Aleidus Glyndwr Drosten. :)

Noah caught a cold on his last day in Wales. He's on quite strong antibiotics, which is not very nice for his tummy. He's his usual happy little self but you can see that he is tired easily and he needs to sleep a lot longer. He's on his breathing machine during the night to give him some needed rest. We're taking it easy and being extra cautious before his operation, we don't want anything to stop this going ahead. I will admit that I'm quietly terrified of this operation. It's major surgery and he's our little boy. My heart want's to hug him and keep him away from this, but my head knows that this is what he needs to keep him safe and help him grow towards his future. So again we ask that you keep Noah and the medical team in your prayers. We will keep you all updated as much as possible over the next few weeks, but of course you can understand if these updates are brief.

We'll post some nice photos soon.
xxx The Drostens

The Good, The Bad and The Ugly

Hi Everyone,

It has been a busy week here at the Drostens. Three main things going on, called the good, the bad and the ugly for no good reason. (Except for getting you all in the mood with a fantastic soundtrack) So what's been up?

The good, we had an appointment in Rotterdam at the Sophia,and we have scheduled Noah's operation the remove the blockage in his throat. The bad, we have had to postpone the moving from Monday to Thursday. Too much is not finished, especially due to having to redo the stairs and the floor taking longer then expected. The ugly, Noah was rushed to the hospital last Wednesday, because he had enormous trouble breathing. Luckily it all turned out to be okay, we found out he had a too small canule (breathing tube) since friday, and the effort of breathing through that had gotten too much. He quickly recovered after changing the canule and a few night on his breathing machine to give his overworked breathing muscles a break.

So for more details.
The Good: Noah's operation is scheduled for June 8, and he will have to stay in hospital for three weeks afterwards. The whole healing process will take around 4 months, after which he will be closely monitored for another two months.
The plan is to create an opening in his throat, while preserving the vocal cords. After surgery a balloon or plug (stent in dutch medical language) will be put in his throat to keep the newly created windpipe open. He will not be able to breathe past that so he will keep his canule for the time. The plug (for a lack of a better word) will also prevent scar tissue from growing inward and reducing or even closing his airway.
This plug will be very much in the way, so it is expected that Noah will not eat, and have some discomfort (medical language for pain) from it, especially in the beginning. The plug/stent will have to be swapped every three weeks, which is a full blown operation performed under general anaesthetic. Noah will stay in hospital until the first change, if all goes well he can go home and come back every third week for the next stent change.
It will take about 4 months for his throat to heal completely, so it will be a lot of trips back and forth to the hospital for us. Noah seems to be looking forward to traveling, He is sitting here with a 'get on with it Dad!' expression already!


Once he has healed , the doctors can asses the quality of his new airway. It is possible that it will still be too narrow, or too soft (it will be difficult for Noah to keep his airway open if it is too soft). The best case scenario is that his airway will be wide and firm enough, because it would be difficult for the doctors too operate again - this is a one shot deal.
His vocal cords will also be checked, but there is even less the doctors can do about them. They hope no scar tissue will form on them (limiting movement and thus range of sound), but as Noah has never used them, the muscles and and nerves are an unknown factor. We have some indications that his reflexes work (coughing, etc) but whether he will be able to make sounds, or even speak? We'll have to wait. So 5 more weeks, and then 4 months of waiting.


The Bad: Moving has been postponed a few days, as the builder has had too much delays this last week. All though they had an alternative entrance to get into the house, they couldn't make too much dust because the floor was being lacquered downstairs.
We decided we are still moving on Wednesday with Noah out of Doetinchem. Our stuff will arrive from storage early Thursday morning. The house won't be completely finished, as we are still waiting for some materials. However we had already booked nursing care, and we are at the point of running out of money, so it may be a few months before we finish the last things. I'm sure our the Drosten Seniors love us, but by the end of a few more months .....! ;)

The stairs, which had to be remodeled are being put back into place. They need painting and handrails. Not finished.......


Our bedroom will get a big cupboard, to replace the walk in closet we had at the old house. Not finished....

Big family bathroom. Some tiles still need to arrive, as the amount required was miscalculated. Not finished....

Kitchen. They ordered the wrong top cupboards, so the right ones will arrive in about two weeks. Functional - but not finished.....


And of course some more trash in the garden, which will need to be removed somewhat to prevent the movers from walking too much dirt into the house.
Not finished.....

So this was the situation Thursday in the early afternoon. They will have almost a week (luckily our builders are working over Dutch national holidays, "Queens birthday" and "Remembrance day" on May 5th), to finish a lot of stuff. Most of the rooms are close to being finished so we hope that they will get quite far, most likely only being delayed by the tiles that have not been delivered yet.


The Ugly: Noah had to go into hospital because he had troubles breathing on Wednesday. Louise was taking care of him, and suddenly he started hyperventilating. She gave him oxygen but in the end she had to do an emergency canule change, as it seemed that the canule was blocked by something.
While changing the canule she realized that the old one was a size too small. This must have happened Friday when one of the nurses supervised grandmother doing a canule change, and we didn't think to check it. So the combination of labouring hard to breath for 5 days, and then the blockage tipped him over the edge.
Although the size differences seems small 4mm compared to a 4.5mm, there is overall a 25 % increase in the size of the breathing tube, so he had been doing the equivalent to running a marathon for 5 days - which is how hard his heart and lungs had to work.
Just after Louise changed his canule the ambulance arrived, as his breathing did not improve much. Noah fell asleep on his way to the hospital, probably completely exhausted, but his oxygen levels stabilized and he could do without oxygen after sleeping for about 2 hours. This convinced the doctors to let us go home, after much discussion between the local doctors, and the doctors in the Sophia. We were advised to put Noah on his breathing machine, to speed up his recovery and give his overworked breathing muscles a rest. He slept a lot for a few days afterwards, but seems fine now:



So, a big shock, but looking back we recognized the symptoms from previously when he needed a larger canule. No harm was done, it was just a sharp reminder that you can not let down your guard and get complacent, and also small mistakes can have a big impact.

So, more here in (maybe more than) a week as we will probably be too busy moving to even connect our computer to the internet.

Thijs

We're on the move! - More help requested!

Hi everyone,

A house update this time, so no new Noah pictures. Sorry everyone.
Our new house is starting to get finished, so all the preparation that the builder did is finally starting to pay of. The biggest step in the last week is that the floor in the living room has gone in. It make it look so much more finished immediately:


The hallway is being done in the same wood, but without the black line in it. The bit that seems unfinished will get a big mat in it for everyone to clean and take off their shoes before they are allowed in. Trying to keep everything in top shape for as long as possible!


This however does not come without any problems..... As you can see the stairs are missing, and also, the floor cannot be walked upon until they have finished lacquering it. So no work on the top two floors.

Well that is what I was afraid of as well. but our trusted builders have improvised and overcome this problem. If you can't have stairs inside, simply place them outside for an even grander entrance:
Tiling upstairs in out washing machine room was just finished when we were there, and preparation for more tiling was on the way.
Also, the areas that are still accessible from the outside have been worked on, the door to the garden are glazed and painted, also nearly finished. The front door also got a good layer of paint, and the rest of the woodwork will follow.

As the builders are moving ahead, so are we. We will have the stuff from storage delivered at the new house on Monday the 3rd of May, and we will move from Doetinchem with Noah's stuff on Wednesday the 5th of May.
Some help will be very welcome, on either day, but especially on the 5th, as I hope to get all my stuff from my own storage box as well that day. So, if you feel like having the first peek, at a probably still messy, but mostly finished house let us know!

Thank you again for the work on last week, and hope see a few of our readers next week! Only a week to go, who would have believed it!

Thijs

A note from Doetinchem

We're starting on our 3rd week of occupation in Casa del Doetinchem. We arrived as battle weary troops, having survived the '60 boxes to pack on moving day' manoeuvres and the 'only 2 toilets & 3 people with stomach flu' campaign - luckily 1 of the persons was wearing pamper, and I'm sworn to secrecy as to which one of us wore the pampers!! ;)

I describe our stay as an occupation, because with Noah's medical stuff, and all the extra furniture, toys, clothes and etcetera that you may need for the most changeable month of the year, I cannot describe our stay as a "visit"! Luckily we have little Noah as our secret weapon to diffuse any hostilities, I think that Oma, Opa and Tante Anneke are totally disarmed and are even enjoying being able to see our little charmer whenever they want.

Of course, should the out-laws put up any resistance, our secret weapon is also armed for biological warfare - a few nappy changes should do the trick! :)

Seriously though, it's been lovely here. We have some time to breath the fresh air, and take walks in the park. It's great fun because the park has their own Highland cattle - which have ginger hair just like Noah!!

We're pretty stressed and run down from all the activities that are going on at the moment so it's nice to have a change of pace. It's still busy, because we have to travel back and forth to Leidschendam for the build, and we don't have as much nursing support here but it's at least a more relaxed environment.
Noah surprised us all because he started eating. Not like a bird, but from a spoon. Within a week he was eating a full bowl of baby cereal. He hasn't quite mastered getting it all in his mouth yet though!!

With fabulous timing after a week of settling in we set off to enjoy a family party in Eindhoven. The star guest was little baby Max, who at 6 weeks showed superior intellect (he was practicing his smile), and with his Kurt Douglas cleft chin is sure to be a future lady killer. Ladies, you've been warned! Welcome baby Max, and congratulations to his mum and dad on producing such a little star.
Here's a proud dad with a freshly burped Max next to his cousin Noah. (Sorry but I couldn't help messing with the photo effects).


For our second weekend we'd planned a trip to Holten where we were able to do some long overdue catching up with friends. We were surprised to realise that it was almost 3 years ago since we were all together and it happened to be in the same park and even in the very same bungalows. It was lovely to see the new additions to our growing group of friends and wonder at how much all our lives have changed in what is really such a short period of time. I can't believe I don't have any photos - too busy chatting!!
We loved catching up with everyone, and visiting one of the local attractions, Twickel castle which was closed ... so I had to make do with shopping in Delden, oh well! :)
Thijs and I also enjoyed 3 full nights of sleep as nurses came to take care of Noah - bliss. It seems that our systems are not used to rest and relaxation though - Noah got ill, followed quickly by me and Thijs. So all 3 of us are not enjoying a heavy cold. Noah is for the moment on extra antibiotics and on his machine for the night and some extra oxygen for the day. Oma is sneezing fantastically loud every now and then, so she could soon be joining our merry band of 3!! Casa del Doetinchem is looking more and more like a hospital ward with all these sick people loitering about.

Talking of hospitals - we're going to see the ENT and lung specialist on the 29th of April. That's the date we'll be able to hear what they are planning with regards to Noah's operation. Watch this space for more news when we hear it!

So as you see, the world keeps turning and the huge woodpile outside our new home was not about to move itself to the recycling company. So a merry band of 8 worked their little booties off schlepping wood and taming the wilderness that was our garden.

A sunny Saturday in April is apparently THE day to take your recycling away. Thijs, Willie and Marinus enjoyed long queues and short tempers of bureaucrats all in the name of recycling! Thanks lads.

Back at the house Opa Lex, Anneke, Sandra, Maarten and Judith attacked the garden. Lex and Anneke have previous experience in excavation from their Greek adventures.
Here is a before shot of the back garden, take particular note of the right hand side of the picture which is full of bushes and overgrowth.

This Greek excavation proved to be a useful experience as the team got to work pruning and digging - they eventually uncovered a previously unknown patio from beneath the debris!


This is a picture from the top of the stairs looking out onto the side of the house, before ...


and after ..... no more shrubbery!


Here's some of the team taking a short break in the sun ... can't wait till we can do the same :)



I have only seen the pictures, but I'm really surprised to see how much more garden there is.
With this lovely weather we've had, it's been great sitting outside in Opa and Oma's garden, even though Noah is ill, he can still get some fresh air. This was one of the main reasons for wanting our new house, and now we have such a lovely big garden too look forward to.

Hooray!! Thank you so very much guys and girls :)

It wouldn't be a blog update from me if there wasn't a grump to write about would it?! I'll try to keep it short though, especially since it's already been sorted out :)
There was one problem with the house this week which was due to the Electricity / Gas company installing their meters too far away from the requested location. This now eats into the space required for the stairs. The main reason that the meters needed to be moved was to allow the stairs to built so that a stair lift can be installed should Noah ever need one. So this could have been bad if we couldn't resolve it.
Luckily Dennis, our designer, was able to go immediately to Leidschendam to confer with the builder to come up with a workable solution. Sadly the stairs need to be re-done, costing time and of course money.


You may be able to tell that I'm very cross about this, but I'm also relieved that we have such good people around us that helped us work around inept monopolist companies! Grrrr.

With a bit of luck, and a prayer of two, in just two more weeks and we hope to be moving into our new home. So that's it for the moment. We will try and rest and recover and be very patient. Hmmm, must work on the patience bit! I'm just being silly, I must admit to being very excited, I can't wait to see the finished house. At the moment it's a shared dream, it's a bit scary until it's a reality.
Again we are so thankful for all the good people that surround us. Noah's team that have traveled to Doetinchem to look after him and given us a needed break. Our family who step in and help us all the time. Our friends near and far who lend a hand or support when we need it most. Dennis and Ferro for working so hard on such a short schedule to turn our "fixer upper" into our new home. We really couldn't do this without you, so thank you all for the kindness you've shown us - we really do appreciate it. Even if we are tired, grumpy and snotty nosed on the outside :)

Help needed .... apply within!!

As usual building activity creates a whole lot of trash. Although the builders have already filled a 10 m3 container there is some more trash....
Here I am indicating how much trash exactly, as in a good fisherman's story. Trust me it is at LEAST that high!

Now, we need some volunteers that will help me to get all this trash to the municipal dumping grounds. Someone with a trailer (aanhanger) would earn bonus points, but otherwise I'll rent one for the day. Did I tell you yet that there is a crate of beer at the bottom of that pile? Trust me there is!
Anyway, I will try to remove this pile on saturday, 17th of april. I'll start at 12.00, and will be finished, well, whenever it's finished I guess. The dump site is open till 16.00, so that will the latest. Any and all help is welcome, so please let us know if you can come.


More news on the building front: The kitchen is being prepared for the installation of the units and equipment. The main job here was taking out the old door:


Bricking up the door:


And installing a new window:

A last unfortunate incident was that the windows weren't closed well enough and a window smashed in the windy weather that has been hitting the Netherlands recently. Luckily I was on my way to The Hague already, and was able to get there quickly. I just boarded up the window, for the builders to fix when they get back from Easter holidays.


Not much Noah news in this post, but we have this little video for you. We have been concentrating on eating with him, and it is starting to pay off. More on that in a next post undoubtedly!



Thijs