We had another busy couple of weeks, so a quick message, with some pictures. We actually didn't take many nice ones, so you'll just have to wait for the next update to see some proper pictures :-).
Lorraine, a friend of Louise and Noah's fairy godmother visited us, and I took some time off, so we had some time to enjoy a holiday like feeling. Louise celebrated her birthday two weeks ago (yes we haven't been updating very much), which we celebrated with a very nice diner, and some cakes.
We also had to go to the hospital, for a 24 hour observation. All went well, although no news or anything about his belly. The outcome of the observation was that we can reduce the amount of support the breathing machine gives him. Although he will stay on it for the same amount of hours, it is a big step ahead. The support is reduced by about 25 %, and so far he seems to be doing good on his new settings. Noah wasn't too grumpy in the hospital, but we think he prefers being home a lot more!
As I mentioned the doctors didn't investigate his digestion problems very seriously. We are very angry about this, and have send a letter to the hospital concerning this. Just to show you what we mean, a few pictures (not very nice ones unfortunately).
As you can see his belly resembles a balloon sometimes, and taking the air out is not a nice thing to do, as it is very invasive.
Noah's belly can shrink up to 10cm when he has no air in it.
Unfortunately Noah also caught a virus in the hospital (or shortly afterwards) so he had a pretty high fever last weekend. He had a 39.0 celsius (102 fahrenheit) temperature on sunday, but some stronger paracetamol and a good night sleep dropped the temperature, and he was a lot better by wednesday.
So we took it easy for the last few days,but manage to get out for a few nice walks. Since this is the Netherlands, the weather is sometimes a bit wet. That does not stop us though! Out in the rain!
We hope to post a nice update soon, as we are taking steps to resolve Noah's digestive problems.
Thijs
1 comment:
Hoi Thijs en Louise,
dat zag eruit als lekkere verjaardagstaartjes! Heerlijk, krijg gelijk trek!
Jammer dat de artsen niet serieuzer hebben gekeken, zeker als dat wel serieuze problemen geeft bij Noah (en daarmee ook bij jullie).
Hebben jullie nog reacties gehad van andere mensen met kinderen met CHAOS? Ben benieuwd of zij nog goede tips etc voor jullie hebben. En ik denk dat het sowieso wel fijn kan zijn om contact te hebben met anderen die precies begrijpen hoe het is om te leven met iemand met chaos.
Geven jullie binnenkort ook weer even die leuke cijfers, hoe groot en zwaar is Noah nu? Nog steeds lekker aan het groeien? Vast wel!
Nou, ben benieuwd naar de volgende blog!
Liefs Nieke
Post a Comment