Almost tube free!!!

The last month seems to have flown by and Vinnie has made progress in leaps and bounds. A few weeks ago his oxygen was turned down to 1/8 litre (lowest setting) and around the same time I discovered a great website for parents with tube fed children. It was a huge source of information for me and has given us the confidence to try weaning the little guy off the NG tube.

Although pediatric nasogastric and gastric feeding tubes are relatively common in NZ/Aust/UK/US (and most westernised countries with a high standard of medical care) the plan for weaning infants/children off them is almost non existent, and the knowledge for how to do so is lacking. Since we have been home we have had a community Speech and Language Therapist working with Vinnie as he was on an NG tube. In the past when I had asked about getting Vinnie to eat orally (bottle/solids) she had provided some info, but the general feeling was 'he will eat when he is ready'. I was told to offer him solids after a tube feed, the idea being that once he had built up sufficient oral skills they could then reduce tube feeds accordingly.

I wasn't entirely satisfied with this approach but at the same time wasn't sure how else to get him to eat. Then I found the website referred to before: http://tubefedkids.ning.com/ This site has been set up by a woman in Tasmania who had a son with an gastric tube and weaned him through a hospital in Austria with a specialised weaning program (after lack of support in Australia and frustration with her local medical team). The site is a forum for parents of tube fed kids (past or present) to share experiences around tube feeding, weaning and provide support for each other.

The principle for tube weaning commonly supported on the site by most parents is a rapid wean (rapid reduction in tube feeds) often referred to as the 'Graz Model', and was developed by the Graz Children's Hospital in Austria (the one with the tube weaning program). When you read through the graz model of tube weaning it starts to make a lot of sense. Tube fed children have no motivation to eat as they are constantly full from tube feeds. They often experience a lot of discomfort from the tube itself and are overfed (on the advice of the dieticians/doctors who calculate feeds based on body weight). Then there is the gagging/reflux/vomiting issues that the majority of tube fed children experience. Hmmm.... sounds a lot like Vinnie I am thinking at this point.

After a few weeks of researching tube weaning and the graz model of rapid feed reduction we decided that we wanted to go ahead and try this ourselves at home. If the home attempt fails we thought we can register for the online coaching program done through the Graz Hospital in Austria. We made an appointment with Vinnie's paediatrician to discuss our idea and plan and he was extremely supportive (much to our surprise and relief!). Some of the other medical team (particularly the speech and language therapist) have not been so fond of our idea but are 'interested' to see the outcome.

Anyway, that was last week and we decided to start the wean on Saturday. The plan was to reduce total feed (1030ml formula per day) by 20% per day over a five day program. By day 5 we imagined we would have a ratty, grizzly, HUNGRY child that hopefully wanted to eat. Some of those symptoms happened a bit earlier and by day 4 we decided to cut out feeds completely ahead of schedule (off our own back.... hey, we are the parents after all, trust your instincts!). I am so happy to report that Vinnie has started to drink from a modified bottle (he can't suck so the milk free flows from the teet) and is having small amounts of pureed fruits/vege/baby rice. He is currently having enough to remain hydrated but we imagine there will be some weight loss initially until he gains enough eating skills/appetite increases. I called the SLT this morning to report our success so far and had to make a real conscience effort not to sound too smug!

At the same time that this has been going on we have also taken Vinnie off the oxygen during the day time (again, off our own back... naughty naughty. Expecting a stern look from the respiratory specialist when we see him tomorrow! We were well aware of his oxygen saturations before we did this though so not completely careless parenting on our part). It is so nice to see him tube free finally! If only during the daytime... I am sure the oxygen will be gone for good by the end of the year.

Aside from trivial stuff like feeding and breathing, Vinnie is also teething. No teeth yet but lots of grizzling and crying (which we hadn't experienced a lot of until recently!). He is still a happy, contented little boy for the most part though (as much as you can be when you are teething and your parents are basically starving you in order to get you to eat!).

Anyway, that is all our news and looking forward to hopefully reporting back on a successful wean in a few weeks time. Enjoy the pics!!!