AOSupport

Hallo once again everybody and happy new year!

I was wondering whether catching a plane for a short flight (about 1 hour) would be something possible for my 3-year old boy as his skull defect hasn't closed yet (and maybe it will never close on its own...). Next week I'm going to ask the neurosurgeon about this, but in the meantime I'd like to know whether you had any experiences of this kind.

Thanks a lot!

Sara

I'm sorry I don't have an answer for you. Please let me know what the doctor says about it thoug! Good luck!

Thanks! Yesterday we saw our neurosurgeon. She said the airplane pressure is not an issue, so I think we're giving it a try :). The appointment went very well, the bone defect has reduced to 3.5x2 cm (it was 3.5x4 cm this period last year) and skin is more trophic than before. No surgery for the time being, we'll meet her again next year to see how things develop. Is everything ok with you?

That is great! Good news. I am always happy to hear about things fixing themselves without surgery.

We are doing just fine. We had about a whole year between the time he was 2-3 that we didn't have any doctors appointments, just early intervention working with him. Right around his birthday though he really struggled to breath at night. At the same time he went in for his ECHO and found that his narrowing is gone but now has a problem with his pulmonary artery being twice as big as it is supposed to be. They aren't sure if the two problems are related or not. They did a sleep study to check his levels while he sleeps and couldn't make sense of it all. He really strains and struggles to breath but his oxygen levels never dropped which was weird. They left it up in the air so his ENT decided since no one else was going to do anything about it she was going to put him on a nasal steroid to see if that helps. Surprisingly he is doing better after 3 months of that so maybe it had nothing to do with his pulmonary artery after all.

As far as his pulmonary artery they did and MRI to get a better look but couldn't make sense of it either. Usually the only reason it would get larger is if the heart is working extra hard and/or if there is narrowing some where. Neither of those is true so we are going to do another ECHO in June to see if it is getting bigger in which case they will need to do surgery.

I have decided with AOS you just have to get used to not having any answers and having doctors who are very stumped. They never seem to fit into the normal category even on some very basic and routine things.

You're right, everything seems so complicated... I really hope you'll manage to sort it out. Thank you once again for keeping in touch!