Everything Changes

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

Another good day

Noah had a happy Sunday. No incidents through the night, nor during the day. He kept the nurses busy all day by pulling off his breathing apparatus. The nurses would try to tell him off but he would just smile at them, he's just so cute. I have to think that Noah is telling us "hey, I don't need no stinking breathing machine, I can do this on my own - send me home!" :)
Noah has a new toy to play with. It makes the most awful music and has hideous flashing lights, I'm sure it will drive the nurses demented, but Noah loves it so who cares!

Thijs and I got some well needed rest last night, our eyes are again more white than red. I can't tell you how good it feels to be so close to Noah. I never realised what a weight I was carrying around until it was gone just by being so close to him. Even though Noah seems to have turned the corner, I don't think we will go back to Den Haag just yet. It's just too nice being able to go in and see Noah whenever we want to.

Next week, Tuesday, Noah is scheduled for a surgical look at his lungs and throat. I'm not sure if that is still going ahead now that he's getting better, but I will keep you all posted as soon as I know anything. Oma and Opa Drosten are going to visit on Wednesday so I'm sure that will cheer him up.

Well that's all the news from Rotterdam. Thanks again for all the messages of support.

The Drostens

A new day

Just thought I should let you all know that Noah had a great day today.

This morning he was able to enjoy splashing around in his bath, he'd kicked his infuse out and so we thought we would take advantage of this and I'm so glad we did. He managed to pee over me twice before I got him in his bath, the little tyke! I was able to take him out of his bed and have him on my lap to give him his bottle, which he drank all of his milk from (he's only been managing 50ml max and today it was 100ml). I read him a story, and he fell fast asleep.

This gave him plenty of energy to play and kick about when his Auntie Anneke and his friend Maarten from Arnhem arrived. His Aunt got loads of smiles out of him, he was focused completly on her while she helped him kick the stuffing out of his stuffed animals!

I have to admit to shedding a few tears of relief and happyness in the expressing room, (kolfing kammer), I feel hopeful that Noah turned a corner today. His incidents have gotten less frequent over the week, and for the last two days most have been managed without medication. We still don't know why this has happened, and to be honest, as long as they stop - I don't really care! :) He is now deep and peacefuly asleep, we wished him another restful night.

Sleep well.

Update from the Doctor

Our usual doctor is away at the moment, but because of all the excitement we've had an update with another doctor. Noah has had a lot of tests done and all the results are back. As usual with Noah, he is perfectly healthy - after his own fashion! So there is no obvious cause for all these incidents.
The ENT (KNO) doctor alongside a lung specialist doctor will perform an exploratory operation on Noah on Tuesday to see if there is any irritation in his airway or lungs.
Together with the nurses we have established ways to keep Noah comfortable. I believe this is helping in keeping the number of incidents down. Only one last night and one during the morning. In between Noah has been able to relax and he has even had a little play time.

It's all a bit nerve wracking, the fact that incidents can happen so quickly, but I'm so glad I'm here close to him. It really feels so much more like we're family. Well I'm off to cook dinner now, so this is a short entry. As always, please keep Noah in your thoughts and prayers and we hope to see him fully recovered and back to his happy self again soon.

Love to you all from Rotterdam.

Update from the Ronald McDonald House, Rotterdam.

Noah had a few episodes that required the nurses to breath for him, but everyone saw a difference in him by the end of the day. He really takes comfort from us being here and that makes it all worthwhile.
Today Noah had an echo on his heart but we won't know the results until after the doctors have compared it with previous echos. His belly is very distended and hard, he received water medication in the hope that he can urinate a lot of the excess away but for now this symptom remains under high observation. Noah also received some medication for his lungs to help him shake loose some of the phlegm and this did seem to make a difference. Tomorrow another echo will be done to look at the fluid in his belly.
The Ronald McDonald house is thankfully very comfortable and of a very high standard. We were able to cook a meal and make sandwiches for tomorrow, which helps us to feel a little bit more normal in this situation. It's wonderful that such facilities are available for parents.
It's been a very long day - we left Noah trying to fight sleep by boxing his mobile animals. His eyes were rolling around in his head so I'm sure as soon as we were out the door he was busy counting sheep - now it's time for Thijs and I to do the same!

The Drostens

UPDATE - 27Oct midday

Noah had a restful night, only one episode which is an improvement on the previous night. I was able to get in early to see Noah this morning since I'm so lovely and close by in the Ronald McDonald House. His little face showed how surprised he was and then lit up with a big grin. My heart melted.
I took care of him instead of the nurse, which was great. He had a restful bed wash, (putting in his bath would take up too much of his valuable energy at this time), which I followed with changing his cannule band. This he didn't like at all. I think he's a bit hyper sensitive because of all the people that have been prodding and poking at him these last few days, so he got very upset and had an episode. However, he didn't need medication to calm down, so that is also an improvement.
Once he was dressed he lay in my arms and drank 80ml of his milk, only needing to take 20ml via his food tube (sonder). He had a little play with his baby gym, taking his frustration out by whacking all the toys! I left him sleeping peacefully. I'm also off for a little nap, (it was a long night!) and I'll go back in time to express some milk for his afternoon feed around 3pm. It's too early to say for sure, but Thijs and I are hopeful that he's turning the corner. The doctors are still investigating the cause, no results back yet.

Louise

Mini Update

Noah hasn't had an easy last few days. He's been experiencing episodes where he gets so stressed he forgets to breath and the nurses have to intervene and take over from the machine in order to get Noah breathing again. The cycle starts with a stomach cramp (which Noah normally suffers from due to excessive wind, which is a side affect of the cannula). It is thought that he contracts his stomach muscles which in turn constricts the fluid in his body cavity, pulling it all up to his lungs making it painful and difficult to breath. Noah has an infuse inserted in order to administrate a relaxant when he has one of his episodes. This is to try and break the cycle of contraction, pain and panic.
The true underlying cause is unknown and so the doctors are investigating. On Thursday a spot opened up and so Noah was able to get an MRI done, they took a picture of his lungs and body cavity (where all the fluid is gathered). We won't know the results for a while as there are specialists that need to interpret the image. We're hoping things will pick up a pace on Monday when the usual amount of doctors are available in the hospital.
This is all quite upsetting for Noah and for us and so we've decided to stay closer to Noah in the Ronald McDonald house near the hospital in Rotterdam. So we will only be available at limited times via our mobile phones. Lilo is off to her dog hotel at Marijkes where she will be spoiled rotten by Marijke and her daughters.
We will of course update the blog with any news as soon as we are able to. Please, once again, keep Noah in your prayers and thoughts.
Thanks all,

The Drostens.

VIDEO - May take a while to load

Just some experiments. let us know if you like 'm!



Bath Time





Boxing with the wild animals





Watch my Billy Idol Impression




Surprise! You're on Camera!




Well, as we said: Hope you enjoy and don't forget to check out the other post!

Thijs