zaterdag 11 december 2010

Some good news would be nice

If you think it's already bad enough it's getting worse. During the last week we noticed that Kalle has developed problems drinking his bottles. It's not that he doesn't want to drink, but swallowing seems to be more and more difficult for him. He chokes during feeding, starts to cough. During the last couple of days he started to sound like an 80-year old that has smoked too many cigars all his life.
The big question is: why? Drinking has never been a problem, even during the first months with excessive crying. In fact, that's the only thing that has never ever been a problem at all....which is remarkable, regarding his heavy neurological problems. Most kids with this kind of brain damage can't drink on their own and need a feeding tube. The bottle has always been Kalle's best friend (no, it's not what you think... of course it's always been baby formula).
What might influence the problem:

- Since Kalle is on the ketogenic diet he's not allowed to have regular thickener in his formula (too many carbohydrates). He was not used to drink fluids that 'thin'. (By the way, I ordered a thickener that is ketoproof, but it's still on it's way from the UK, 'due to heavy snow fall'...). But: The first days in the hospital Kalle drank the bottles without the thickener and did surprisingly well. On the other hand: We have to add several meds to the first bottle in the morning, including calcium powder, causing the fluid to thicken a bit. He has way less problems drinking this bottle than the other ones.

- Kalle had a cold before he developed an infection of the middle ear. Cold means lots of phlegm, dancing up and down your air ways, making you want to cough all the time. Needing to cough and trying to drink is not exactly a good combination. two days ago we went to the emergency room because we were so worried. The sounds Kalle makes while he's breathing are terrible. He chocked so many times that it felt like 10 bottles of formula had entered his lungs, probably causing a serious pneumonia within hours. Instead the doctors thought he has a certain virus, causing the amount of phlegm. But the tests came back negative. Which doesn't mean there is no virus...some of them are not detectable.

It would be quite a coincidence that Kalle's brain stops giving the right drinking instructions now. Months ago his 'speech therapist' (who is also specialized in solving drinking problems) said that Kalle already learned to drink consciously (the drinking reflex usually disappears after 6 months).
Right now we take the bottle out off his mouth every couple of seconds, just to be sure he doesn't choke and to control somehow how much he swallows. If this doesn't works and he keeps choking we have to go to the hospital tomorrow. Kalle will the get a nasal feeding tube, to make sure he's getting enough 'food' & fluid.
So far he pees enough, he doesn't have a fever and his blood is okay (ketones and blood sugar). But we don't want to wait until this changes and / or until he gets pneumonia. Today we just hope it will get better. A nasal feeding tube is not exactly a nice piece of jewelry. But if it gives Kalle the opportunity to recover until that stupid thickener arrives....

To be continued....

Taking a walk in our neighborhood...getting some fresh air!

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