Hospital madness

Hi everyone,

Just a quick update from our visit the hospital. We asked for as many as possible appointments over the two days visit, and we got them!

Monday morning 8.30 the eye doctor.
We were there a bit longer than expected as Noah needed some eye medication so we were there till about 10, with some waiting in between.
We had to quickly return home, as we'd run out of time to complete our packing and so we needed to finish that and return just in time for our 12:30  appointment with the nurse of the breathing (machine) team.
At 13:00 the doctor from the breathing team.
At 13:30 an electro cardio gram, (Noah's night time heart rate has been dropping to 39 bpm!). 
At 14:00 the hospital social worker, followed at 14:30 with the IC nurses that will take care of noah. 
15:00 the dietist dropped by.
15:30 the IC doctor.
Finally at 16:00 the ear nose and throat specialist.

You'd think that would be the end of day one, but oh no! Then the IC nurses from the evening shift were next to visit followed by the hospital vampire! Noah needed to have some blood taken for his blood gass control levels. At 17.00, we started preparing him for bed, but it took till 19.00 for all the hospital equipment, monitors and everything to be set up.
The visit to the hospital is a chance to monitor Noah through the night with lots of different systems. The idea is to pretend like Noah is at home, so they can see how he does 'normally'. He's in a seperate room from the other patients and we, the parents, are responsible for his care, just like at home.
We quickly went to make and eat some dinner at the Ronald McDonald house around 19:30, back at 21:00. Louise stayed the night in the Ronald MacDonald house, whilst I took care of Noah through the night at the hospital.  So I put his food on, and waited for him to settle to sleep.
At 23:00 another blood sample, so I got to sleep just after that.
00:00 Noah's alarms went off  a few times till around 02:00.  It felt like I'd just dropped off to sleep when ... at 3:00, they needed to take another bloodsample from Noah.
At 4:00 the night nurse came in and apoligized, but the doctors decided they needed another E.C.G., while he was sleeping. Well, that involved 10 more stickers on his chest, so Noah was not sleeping anymore by the time we had stuck them all on.
Oh well, 5:00 his food needed to go on, as he was not allowed to eat after 6:00 and it takes an hour to feed him.
Louise came to take over at 7:00, so I went to the RmcD to try and catch some sleep... Unfortunately the hospital is a big building area, as they are building a completely new hospital, so that didn't work out too well either. Louise didn't sleep much either as the worry kept her awake.

Oh well, operation day was more quiet, but basically just a long long long day of waiting, (and of course the worry that it will be alright). First waiting for when he was going in for surgery, and then waiting for when we were allowed to leave.


So what were the results from all this waiting and meetings?

1. His airway looks good, they didn't measure it against the previous time, but it looks allright. Some scar tissue around the canule, and no news on his vocal cords.
2. He now has a smaller size size canule to allow/force him to breathe through his mouth and nose more. Still no real sounds though.
3. Noah came home ill (again). A nice 36 hours of vomiting followed by being blocked followed by... well check our next post.
4. His eyes are okay.
5. Noah's heart looks allright, but his extremely low heart rates have the doctors worried. A follow up investigation is planned.
6. We decided to start seeing a psychiatrist, as our stress levels on even approaching the hospital are out of all proportions. 
7. The dietist told us he should have more food, he lost about 1 kg in weight in the last month. He has also grown to a cool 1 meter exactly. Other then more food, he does not drink very well (at all really), so we need to give him more water when he eats by himself.

So that is 2 days  in our lives, we'd call it "Sleepless in Rotterdam" if it was at all funny or romantic. I'll add this song to describe a bit better:



Thijs

Christmas & New Year update

From one moment to the next it doesn't seem that much has changed, and yet just one post later there are some new things to share. Noah has good days and bad, just like any other child, so all of these activities are not a daily occurrence but more of a good sign for the future.

Noah continues to have trouble with his hands and fine motor skills are a future goal. So it great to see him reaching out for his colouring pencils, although he mostly likes to drop them on the floor, he does sometimes with encouragement like to make a mark on the paper :)



It's not all work ... there are some relaxing times too. Noah loves relaxing back on papa whilst they are watching TV, (Noah's mini TV screen is just out of shot).



The week before Christmas they came and installed a stair lift. It's really saved me some energy and muscle ache but I wouldn't be honest if I didn't say that it was so upsetting when it was installed. We'd planned room for a chair lift, if it was necessary, but we didn't really come to terms with the fact that it would be needed. Still, it's here now and Noah doesn't seem to mind it a bit, in fact he's a bit like a king on his throne. :)


As if the chair lift wasn't exciting enough, some gifts appeared under the tree. "Are all these prezzies for me?" ..... wait and see!



I just loved the fact that we got a lovely white Christmas. The house looked very festive and welcoming. I love our new home.




Christmas Day

We'd decided to have a relaxing Christmas day. Just some nice easy food and good friends to share it with. Noah wasn't feeling too well leading up to Christmas. He had a horrible cold and just before our guests arrived Noah had vomited and was having a little sleep on the sofa to recover.

He soon felt better once his posse arrived and he got a lovely hug from Gijs.



Ties and Gijs quickly found the Santa hats.


Ties thought Santa was cool!


Not one but two men in the kitchen preparing us our dinner, that's not bad at all!



Dinner was so delicious we ate it before we took some photos, but the dessert was so spectacular that it was obvious a photo was required. (I know, it was supposed to be nice and easy but you know Thijs!!!) You're looking at an orange souffle .. yes, served in an orange ...then chocolate mousse, white chocolate coffee ice cream, egg liquor with some whipped cream with a chocolate smudge cake (there's smudgy warm chocolate in the middle!). Yes, chocolate coma ... err I mean chocolate heaven was achieved ;)




Boxing Day

For the second day of Christmas the family was hopefully going to arrive from Doetinchem. I say hopefully because it had been snowing and we weren't sure how bad the roads were. Luckily the Dutch are a lot more organised about these things than in the UK, and the journey to us was uneventful. Since there was going to be a few more of us, I really wanted to go for the UK traditional turkey dinner. Our local butcher was sourcing a free range Norfolk Black turkeys bred by a Dutch farmer so I couldn't resist.


Who wants Turkey ... me! me! me! :)


Here are the "lads" sitting with their starters. Maarten had baked bread 'soup bowls' for the parsnip soup and it was yummy.


The main course was served with all the trimmings, so pigs in blankets (sausage wrapped in bacon) and cranberry stuffing. There was of course the traditional brussel sprouts, roast potatoes and gravy but I didn't think you'd want to see a photo of that!


Everyone joined in pulling the Christmas crackers, reading lame jokes and of course wearing the silly hats :)

I'm not really that into turkey but even I was surprised how lovely it all tasted. It was a great compliment that people went back for seconds and even the brussel sprouts were eaten. Glad I wasn't in the car back to Doetinchem though! :)

The traditional dinner was rounded off with the traditional mince pies and Christmas cake. Not forgetting the traditional Dutch coffee with drinks!


It was a wonderful way to celebrate Christmas. It felt like old times again, cooking and a full table, great fun indeed :)))

The New Year

Our fairy godmother arrived on new years eve. 2011 crept in quietly for us but Lol was kept awake with the fireworks till around 4am!! We didn't really get up to much as we were all a bit festive seasoned out! We did catch a lovely exhibition of Dutch masters in the Maurits house museum and we took in the new arrivals at the Blijdorp zoo.



Happy birthday fairy godmother!

Again too much enjoying and not enough photo taking so here was my blurry effort at the end of a fabulous meal and ever so slightly tipsy, but we did enjoy ourselves a lot!


Magic always happens with the arrival of the fairy godmother. This time it was Noah deciding he now wants to eat ... but only crunchy things. Luckily Lol arrived with a mountain of crunchy kiddie food and so we began to feed the animal.

crunchy food



This then lead to the animal wanting to feed himself ... erm ok?!



As ever, Noah does everything in his own time. No matter how much we worry or hope or fear, everything happens at it's own pace. So this is where I realise that it's time to stop waiting for the next operation, the next milestone, the next .... well, the next anything really. I want to be happy with where I am now. Realising this and achieving this are two very different things but that's what I'm going to focus on this year ... being happy in the now.

Happy 2011 all. xxx

Snow fun and other pictures.

Hi all,

We promised to be better at posting pictures, so here we are!
First of all, a few pictures from when my parents were visiting. Sunday roast, and our little man, not looking his Sunday best, but oh well..... Even little kids can a day were they can't be bothered and put on their sweatpants.

Roast rib of beef, roasties, yorkshire pudding, the full works .... everything! Yummy!! :)

And then... there was snow! First a little bit, which was good as we had some trees removed from the front garden. By professionals this time, as they were much to big for us to do by ourselves.

Before:
Tree 'Surgeon' hard at work. In this case tree butcher would be more appropriate maybe...

After:

When there was only a bit of snow Noah could still go out in his walker, and in the push-chair, but then it really started snowing!

Seems hard to imagine now it is all gone again, but we had lots of it. Everyone loved it, the dog loves running after snowflakes, everything looks really pretty. We had my old sled that my parents brought over the previous week. It even holds the suction machine and the emergency pack that we have to take everywhere.

Noah loved the snow, he started crying when we took him back inside! Any sightings of yeti in Leidschendam can be blamed on him.

He did find it hard to stay sitting still, and keep his balance, but he has grown so much stronger over the last year that he managed to keep upright. Not bad for a kid without tummy muscles!

Lilo enjoyed it too .... but the tennis ball was more of a snow ball! Notice Lilo is getting her father Christmas white beard too? (we're not to mention that she's getting old!!)

After all that snow fun it was time for a nice warm bath, to get all warm again.


Last weekend, we had a party, so my parents looked after Noah, and we could go. It was a 70's theme party, so we had to dress up for it. Here I am together with Paul, a friend of ours.



We'll save you the rest of the pictures, allthough we left early, so probably did not witness the worst.....

Only a week to go till Christmas, so that will probably be our next update.

Thijs


UPDATE: It is snowing again here, already 15 cm on the ground, and more in the air.

massive photo update!

Hi Everyone,

It has been a while, for which we apologize. Noah's operations have been very exhausting on all of us, both physically (lack of sleep in the nights) and mentally. Even now, after the last operation we are still uncertain if his new airway is stable without the support of the stent. The doctor will check again, probably somewhere in February.

So, a lot of uncertainty and lots of changes. This is always difficult to cope with, but we have tried to find ways to let go of some of the stress. One of the best ways is attacking stuff. As we don't want to attack people we decided to target the garden:

 That is what is left of the maple tree in the back. It took away a lot of light, so we can sit in the sun again (well, next summer hopefully). Unfortunately just chopping it down is the easy part of the job, it needs to be taken to the skip, sawed etc....

Louise took care of the branches while I sawed up the logs, to get some fire wood. It still needs to dry, so no log fire going yet.

We needed some serious tools to get rid of all of the branches, so i bought this small trailer. Let me know if you need it, it is standing in the drive way most of the time anyway.

And a nice sunny backgarden is the result:

Louise even dug over the earth to prepare for planting next year.

Now on to the more important pictures. First of all some older pictures from when we were in the east, at the Greta Bontekoe. Here Noah is trying to paint, with the help of the nurse.

They also took everyone to a indoor petting zoo, but bunnies are a bit boring.....

It was nice to have time to do some other stuff, as there was 24/7 nursing care.



Noah will start going to the revalidation center more now he has finished his operations, but here are some pictures and a video of what he has been doing recently:




He can't play with tennisballs at home, the dog would get them before him. She loves tennis balls....

This is an exercize to help him develop his communication skills. Everytime Noah presses the button we stack one more block, utill he gets the push the tower over.

And he is trying to walk by himself. This is still very difficult, but at least it is going better slowly.








Going of the slide is also a favorite, as is walking around the hallways, as fast as possible please!


Dragged along



Slide




We are trying to be as organised as possible, so we do not run out of medical supplies, and can let the nurses take care of stuff. Hopefully this will leave us some time to relax, and maybe even go out for dinner!



well that is the plan anyway!

One last occasion that we couldn't resist: Sinterklaas arrived in Leidschendam, so we took Noah to watch. Dressed as 'Zwarte piet' of course.






We hope you'll enjoy the pictures, and see you soon,

Thijs

Operation succeeded

Noah is resting now, but all seems allright. Old canule is back, so we're looking forward to the future.
More news soon. And I promise to post pictures again, been a bit slow recently.

Thijs

Hospital Update

Another visit to the hospital last friday.

Luvkily it went better this time, the doctor was very optimistic, and now pronounced that he hopes that the next operation is the last one. That would be great, allthough we are not sure if we should believe this good news or not. Bit of a roller coaster ride these hospital visits!
More medical news: the narrowing of the airway was most likely caused by an infection/abcess, located just below the trachea stoma. This swelling may have pressed everything a bit closed. Since that abcess has burst, the narrowing has disappeared (the docor told us to forget he ever said it).

All in all very good news, lots more happened, but that will wait till next week.

Thijs

Not so happy campers

Hi everyone,

It has been silent here for a while. This is not because nothing has happened that is worth telling you about, but because we couldn't find the energy to tell it all in a proper way. We feel that it is better to wait and write a proper post then a random rambling head nor tail post. Not very web 2.0, proper posting instead of a short tweet, but I guess I'm an old-fashioned kind of person.

So, a short overview of what's been happening recently.

Most important is that Noah had another change of his stent, which was on the 28th of September. After all the good news the last time we were almost looking forward to it, although not completely. It is the hospital after all....

Louise went alone, and I joined her in the early afternoon. Noah was already on his way to surgery with Louise when I came in. It seemed to take a while, but that was because Louise had to change his stomach sonde/feeding tube, which the operating room nurses usually do for us. This is a fairly difficult change, which neither of us has had any practice in. Louise had to explain the usual procedure to the anesthesist team for putting Noah under. None of this inspired much confidence.

When Louise went to pick Noah up after the surgery, the doctor was very abrupt and rude. He did not want to say anything about how Noah's throat looked or how long it would take to heal completely. Louise was left alone with Noah, who was still knocked out with the anesthesia and on a strange hospital breathing machine, a completely unknown machine to us. They failed to give Noah a paracetamol, so he came out of his narcosis in a lot of pain, trying to claw the canule out his neck coughing up blood and no nurse around to assist Louise. All in all a very normal day in the Sofia hospital, unfortunately. I am sure you can understand why we work as hard as we do to avoid Noah going back there for more than a few hours.

The doctor came to see us later that afternoon while Noah was recovering, and explained a bit more about what he had seen during the stent change. Not only was the healing process no as far along as he (and we) thought, there was also an additional complication. Where the canule is going into Noah's airway some scarring has taking place, narrowing his airway. So although a decent size airway has been created with this operation (if it ever heals), it may not be of much use with a narrower bit just below it. This complication can be treated luckily, but that means more operations and more delays. The doctor was very grumpy just after the operation, which was why he behaved so abruptly. He is very involved, so this felt like a setback to him as well. So no new expectation of when everything is healed, I personally don't expect it this year anymore, but I could just be a bit too disheartened.

More news from the operation room was that Noah has got perfectly normal teeth according to the dentist that had a quick look. A two year old boy having every single teeth and molar he can have is not normal, but hey what do we know...... So we are back to the formal procedure of getting a normal dentist to have look (which they can't as Noah will not open his mouth long enough), to having a normal hospital having a look under narcosis (which they can't, because they don't have the specialist nurses to take of Noah), to going to the Sofia (yeah, that's going to work).

We didn't really feel like talking to anyone for a week after that experience.

Not that that is an option, but still, you feel like that sometimes. 

After having the horrible hospital experience we quickly noticed that the stoma (opening in his throat) was starting to weep, and getting sore. This got worse a few days after the stent change, with bits of blood and a bad smell coming from somewhere further inside the stoma. It looks like the piece of string that holds the stent in place is sawing into his neck again, nut maybe something else is going on inside, we can't tell. After offloading most of the nursing duties on Louise during the stent change, the hospital now was reluctant to listen to us, and treated us like over concerned parents. Incredibly frustrating and demeaning for us, as Noah keeps amazing every one, and has never had to go back to hospital for any illness, because we have always done all the care ourselves. We do know what we are doing by now! They finally prescribed some extra antibiotics last Sunday, so hopefully that will help. 

To add to the frustration, Noah's earring got lost, which is used as an extra safety anchor for his stent. I’ll try to draw a picture for you sometime so it all makes some more sense, but basically the stent is anchored at top by a piece of string so it doesn't sink into his lungs. This piece of string goes up through his airway, through his nose and is held into place by a plaster on his cheek. So now, on top of having to clean the stoma, which is very painful for the little man, Louise had to reinsert his earring, the hole for which closes up very rapidly. Noah panicked so much we couldn't put him in bed anymore without a big panic attack; it must have hurt so much.

The next item on the list is off course Noah's development. This is going forward, but it is a big responsibility for us. As he cannot go to day care because we cannot risk him getting ill, we need to provide all the necessary stimuli for his development. We get help from the revalidation center, which is very good. We also get some specialized tools, like his walker and the big buttons from one of the previous movies. Everything does seem to take forever to arrive though, there is at least a three month red tape period for anything. We have now ordered and paid for from our own pocket 5 new speaking buttons, but the bigger things are just too expensive to afford. 

Noah's new walker (the previous one was on loan from the revalidation center) arrived last week, but we found out it was broken on arrival. Not sure what is going to happen, but as one of the wheels is stuck in one direction it is not that useful for walking around. Noah's buggy needs new suspension, as he is getting too heavy for his current suspension. We have asked for this almost two months ago, the springs have finally arrived, but nobody knows how to install them...

It just seems to be that we are cursed by some old Chinese witch.... May you live in interesting times.....

Ha! We surely do. On a more personal note, we had to let Noah's personal carer go, as our budget for this year is getting very tight. Yet another thing that is not a nice experience; firing people. The night shifts are too important to be able to keep functioning, so this was our solution. A difficult decision to make nonetheless. 

My work has ordered me to (re)write my CV in a specific style, for which no guidance was given. Oh, and by the way if it is not finished and approved we will give you a bad grade for your yearly review. Thanks, guys, I really needed that as I got 2 out of last 3 projects by myself, without a CV. Needed a CV the last time 3 years ago. After that they cancelled the course I need to do my current job, as there is no money. After I arranged extra care for that week, as this course was in the UK, so Louise would have to cope alone for a week. Thanks for shafting us with the bill for extra nursing care. The meeting to discuss all of this has been postponed to what would have been the start day of the course, for a nice symbolism.

Oh, and there will a course for everyone in your department to make them aware of companywide standards, in a conference center , as the head office is not big enough. Wondering where that money came from..... Luckily I like my current project and my colleges there, but I do wonder what I do it all for.

Now don't stress out completely, we are still standing (cue Elton John) and going strong. It just a very rocky road sometimes. 

Pictures and movies the next time!

Thijs