Today we met with the surgeon (in Taunton): there is an annual visit by the bristol-based surgeon. She was pleased with his progress and thought he was doing very well. The only point from the meeting is her concern over the patch. There has been a (recent) incidence of a baby re-herniating. So, during the surgery a permacol patch has been used as a replacement for Dylan's non-existent left-side diaphragm. The permacol is a mesh that allows the human tissue (diaphragm) to grow back over it and at some point the permacol will dissolve. Thus our worry of chest and spinal deformities because the patch had to be pinned to his ribs is probably unlikely. However, there is an increased worry (from the surgical side) that the patches - for whatever reason - are not lasting long enough to be replaced by human tissue and so re-herniation occurs. We did understand that there was a risk of this happening and the signs are reasonably obvious: breathless baby in distress. A result of this worry is that Dylan will have a chest x-ray prior to his next paediatrics appointment in September to make sure that everything is looking as it should.
Other than that, he's entirely drug free and weighs about 10 and 1/2 pounds. And mostly very good.
Monday - 18Jun12
Yes, Dylan is now 4 months old and weighs 10pounds almost exactly!
We had a follow-up meeting with the paeditrician at Musgrove this morning. And they are pleased with his progress and how he's doing. His growth (weight and length) are tailing off slightly, but he's been under the weather recently and he's also decided that the evenings are clearly the best time to be unhappy. Being unhappy is bad as screaming uses calories that he can ill-afford to use. Beyond that we can stop giving him drugs. Hurrah! He was on theophylline and domperidone for his lungs and reflux, however, the doses of these haven't been increased inline with his weight (deliberately) and they are now doing very little. In the same way even though his growth isn't quite where it perhaps should be there is absolutely no suggestion that we are to go back onto supplemented food added to the breast milk in order to increase Dylan's calorific intake. In fact it has been suggested that we can stop the evening bottle feed and just leave Dylan decide how much he wants and when. Which is all quite fantastic really. The only remaining thing he's getting is the vitamins: apparently all children should be getting these up to the age of 5 (according to the WHO).In terms of development: he's getting there. He's discovered his hands. And will spend an age staring at them. He's getting there with his neck control - behind for his actual age but about right given he was early and spent the first two months in hospital!
They are really pleased with his progress: there are a few things we need to monitor more than if he was a "normal" baby but in a few months we've been told he can go swimming which we didn't think would happen until he was much bigger. And as long as he keeps eating, sleeping and poo-ing then all is marvellous.
We have a meeting with the surgeon in a fortnight who will hopefully have an equally good view on his progress.
No comments:
Post a Comment