Feeding tube

In Tom's words the last week! "On many counts it would be easier to surrender and never leave the house again as it would be too damn hard! However, that is never going to wash with my tenacious wife. So, despite having the usual challenges of 3 young boys, food allergies, Aaron needing x6 200ml NG tube fed milk boluses (each taking 45 min to an hour), tired parents (Ruth feeling the effect of her tachycardia) and no feeding pump to make life easier, today we had Josh’s birthday outing to Legoland ANYWAY! We are now knackered, it’s late but would not change it. We aimed for a midday start and had left at 8pm having seen the firework display. Great day out made even better by being able to go on rides easily with the Legoland ride access pass and 3 very patient boys. Aaron sooooo good not to keep mentioning the food the everyone he saw was eating, and the boys too for eating in secret so obligingly. I have a litre of wee in a bottle…don’t ask but no accidents and happy boys. Josh’s birthday tomorrow and my wonderful wife has just put the finishing touches to a cake tunnel that SouthWest trains would be proud of! Can anyone guess which train is on the tracks… it is Josh’s 7th birthday?! Not my idea but my wife’s AGAIN!...if Ruth appears tired at church tomorrow you’ll know why. She is just now doing the 6th feed of the day half asleep."

  

   

It was certainly busy getting back from hospital adjusting to the feeds and managing school needs, then Josh's birthday cake, presents outing etc. We survived and now its half term, phew! We have now got into a routine and finally yesterday were delivered a feeding pump! we still have to prepare the feeds set it all up and clean up and stay with him for risk of it pumping into his lungs and choking him etc, but now hands free for for most of it, which is great! This week we have had adjustments to our respite to contend with, wetting himself and bed due to liquid diet, a replacement tube put down for Aaron (this one should last a month if not pulled out), and this morning he vomitted again, but seems ok now. Next week he has the last Hep B vaccine jab, plus a flu jab, speech therapy (probably not helped by using the dummy during feeds but hey) and blood tests to check his new medication dosing. Also a routine family dentist trip (but Josh has a spacing problem to look at and Aaron needs his keeping an eye on). Rounded off by a busy weekend of activities planned for our friend visiting from Australia.
Josh is being symptomatic too after a long spell of being really well, tummy aches and pains and diarrhea, up in the night etc. 

All in all we are getting tired and no sign of a break yet!