Ongoing

Since the last lot of info we have had a very good appointment with Alfie's ENT, looks like the trachy will hopefully be out sooner than we thought.

He has also started on solids as he is such a gutsy boy! This has its trials and tribulations and is not at all how I imagined weaning would be. Having to suction him up to 4 times during a meal just so he can breathe easily is not much fun. Also you have to be so clean as any dribbled food can go down the stoma (hole) and cause an infection in his lungs. One of the first solids feeds I did was awful, I had to suction him and it made him throw up a little and the milk all went down his trachy tube potentially drowning him. Thankfully I still had the suction unit on and could clear it immediately but it frightened me to death.

Anything like this also means you have to do extra dressing or tape changes as you can't leave the food to sit near the stoma. I always knew being a science technician would have its uses, just never weilding forceps to change a dressing or syringres to clear a trachy tube. Hey ho thats just the way life goes. They say children and problems go to those that handle then, just goes to show......

The risk of food running down the trachy tapes makes all feeds a bit of a full on exercise, but we are getting there slowly. Can't see it getting much easier whilst the trachy is still in....counting the months...

There are so many minor hazards that could become a major issue, like keeping his Swedish nose on. This is a heat exchange humidifier and filter. It keepes the tube clean and moist and he is an expert at removing it!

What I do have to say is that no matter how much I hate the trachy I have now come to terms with the fact that it is the best thing for him as it keeps him safe and keeps us out of repeated hospital stays.

He is the most amazing, contented littel porklet!

He is now 18 weeks and over 17lbs and can eat for England.

We have learnt to understand all his funny little wheezes and gurgles as he can't vocalise past the trachy. It is fine when we are at home and it sounds 'normal' to us but the lack of vocalisation is so hard when we go out and see other babies. Getting out and about has its challenges with the oh so portable suction unit! The thing weighs 5.5kg and is hugs, the only thing portable about it is the fact it has a handle. It has to go everywhere Alfie does along with his emergency kit and foot pump in case the unit breaks down. We actually had to get a new buggy to carry it and add a buggy board for it to sit on. We are hoping to get a smaller one very soon, thanks to my insesant moaning! All of this along with all the normal baby stuff makes for an interesting time. This said we have tried very hard not to let the trachy limit our enjoyment of our very special little boy.

I will try and keep this up to date as much as possible.

Sx