Recovery

It’s been 8 days since Thomas had his PEG inserted and I thought I’d write a follow up charting his recovery.

Thomas came home on Saturday 31st December on full milk feeds as normal. He’d been tolerating them quite well at the hospital with only a couple of minor vomiting episodes. At home though the vomiting suddenly increased causing us all to worry a little.

The hope had always been that the vomiting would decrease after surgery, the belief being that the ng tube was causing irritation which in turn was causing the copious amount of thick sticky mucus which he was then struggling to clear and was triggering the vomiting. A few weeks before the surgery things had taken a sudden turn for the better and he was managing to clear things more easily and as a result was vomiting a lot less. This had led to some pretty good weight gain and everyone was feeling positive.

So it was very disappointing to feel that the vomiting was worse post surgery. We decided to slow his feed down, from 150mls and hour to 75mls an hour which made a huge difference but did feel like he was attached to the pump all day! Thankfully we’ve been attached bless to increase the speed by 5mls an hour each day and he’s continued to tolerate it well. We’re now up to 100mls an hour and it’s starting to feel more manageable. 

His site is healing well with next to no redness and the bruising is going down nicely. We clean it once a day with sterile water and have to turn the peg to stop it from getting embedded.  The pain seems to be decreasing as well and we have been able to decrease his pain medications as well.

It’s been difficult feeling so limited in the way we can handle and move him as we are conscious that it must be painful, and he still has some difficulties with his secretions which result in some aggressive looking heaving which must be painful for him.

Sleep has been interesting! Thomas has been a tummy sleeper for some time now and obviously this hasn’t been possible for the last week so he’s been quite disturbed in his sleeping but it’s better than I had expected thankfully!

It had been most glorious to wake up each morning and see his beautiful little face, he’s so very expressive. And we think that he is happier not having the ng tube in as he has stopped clawing at the side of his face and he is happier having his nose touched now.

One unexpected side effect is that his oral aversion as returned a bit, unfortunately they decided to suction Thomas a couple of times in the hospital which he hates with a passion plus his two top front teeth chose the day of surgery to cut the gum line so we are back working the positive touch programme to try and reduce this again.

I’m hoping by this time next week this will feel like the positive step I know it has been!