Today saw Sam and I in Starship by 8am ready for an all day sit -in - an iron infusion to be exact. Sadly the medical chart had been written up in a slightly confusing manor, so by the time the offending Dr was located and it was all resolved, it was after 10 before the infusion was started. By this time we were already 3 dvds of Wiggles through! But Sam was a champ, and was so good just sitting keeping one eye on the tv and one on the cars he was playing with.... inbetween flirting with nurses and asking for hugs.... so we managed to get away by about 4.30 and home by 5.30..... he was tired as his normal nap doesn't fit in in hospital with so much going on. Hopefully this infusion will last him awhile.
On another note, we have a theory that we are throwing around to anyone at Starship that will listen....we think we have cracked the reason behind the night time vomitting! The last 2 weeks we have been giving Sam 6 nights of TPN and 1 night of IV fluids (water/sugars/salts - no lipids/calories). On the nights he has only had the IV fluids he hasn't vomitted! This rang a bell in our heads - each time Sam has been really sick with an infection and we've ended up in Starship we are always perplexed why he sleeps through the night without vomitting even though he is ill - well, the answer is that when he is really sick they stop the TPN and he is just on IV fluids! Then we got thinking that when he was really small he used to vomit randomly through out the day and night....and then it dawned on us that now he only vomits at night.... his day time vomits have reduced as we have reduced the hours he is on TPN....and then we heard from a family in the USA who have a 16 year old girl who was able to tell us that she alternates TPN and IV fluids as when she is on straight TPN she feels nauseus! We are really excited to think that we might be seeing a speck of light in the tunnel of sleepless nights! So the team are having a good think and trying to figure out the best way forward so that Sam still gets the fluids he needs (for his dodgey kidneys), the calories he needs (for his 6 pack!) and hopefully banish his awful vomitting so he can know deep sleep (of course we are totally looking forward to this for ourselves too!).
So, we are upbeat, albeit aware it could still be a slow old road as his system is fragile and radical change isn't something that is good for Sam - slow and steady for sure.... which also is a good summary for my running training!