No we haven't enrolled Sam in a paediatric parachuting course, but rather he now has a cute and functional back pack for his feeds! Now that he is bumshuffling, running around after him with a pole and 2 leads was turning into a nightmare scenario, so we talked to Starship and our friendly dietician arranged the backpack. Inside it has a hook (for the feed to suspend on), a velcro belt (to hold the suspended feed in place) and a pouch for the pump. We have played around with the hours he is on his enteral feeds (milk into his jejunum) and his TPN (17 hours into his central line in his chest) to try and ensure that when he is awake and active he is only on one feed. This means he can be independent and have the use of the backpack... but 2 pumps and 2 lots of feed are just too heavy for him and we have to revert to the pole again.
It is so great to see him shuffling around the house and often you hear the slide-slide-slide of his bottom, then quiet for a few seconds.... then he says.....'nooooo'. This usually means he has shuffled over to the CD cabinet (about to relieve it of it's contents), the rubbish bin or is holding onto his feed line about to pull it. He is trying desperately to be naughty, but lets us in on the secret before any crime is committed!
We spent Tuesday in Starship so Sam could have an iron infusion. We got there around 7.30 am, hooked on about 8.15 and then had 6 long hours where Sam was desperate to get out of his isolation room and kept crying, 'door!' - he wanted out the door and to play, but he wasn't allowed. I tried back-to-back DVD's, boxes of cars/toys and he even had a stint at painting, all interrupted by his sad wee cry of, 'door'.
Each day Sam is learning new words and with all the physio work that the 'team' are putting in, he is really getting stronger. Unfortunately he is still getting UTI's, had another one since last blog, but we are managing to keep him out of hospital with quick detection and a switch of meds.
Vomitting at night is still proving to be an issue, with a good night being only 3 wakings, a moderately awful night being 5 and a totally revolting night is 8 wakings. He needs picking up and burping/vomiting and often changing and the bed changing. We are trying all sorts of things to try and improve this for Sam, but so far it seems random what each night holds.
We are all doing well, but we are very tired. We don't have to contend with the physical challenges and hardship of having a chronic condition, to which we are grateful, but having a chronic person in a family is tiring. There is no break in the routine of sleepless nights, medication giving, appointments, vigilance, planning etc. We were approved a respite package 18 months ago for the coming year, to which we have not seen 1 day of yet. We have talked to social workers and various health officials, written to the various health boards, written to MP's and the Minister of Health and still we have not had any of the care that we were allocated. It is very frustrating that when you have little energy it seems that you are required to use that energy on flogging a dead horse. I think I would have preferred if they'd just said, 'No, there is no respite', rather than dangling the carrot that we are entitled to 59 nights a year..... but there is actually no where in Auckland that can currently take Sam because he is so complex. But we shall keep flogging this equine as we hope that it can make a difference for all carers out there as this is an issue that needs some action on. The statistics on marriage failures for families of sick kids is crazily high, and respite - a chance to put your child in safe hands for a few days whilst the rest of the family re-group/sleep and be 'normal' would go a long way to reducing these stats, but sadly it doesn't seem that anyone with the ability to change the status quo is doing a whole lot about it.
So on that rant, I shall leave you to find my sleeping bag as I am on the couch tonight to catch up on the week and Francis is kindly going to get up when Sam screams. Tomorrow we shall switch...and the lovely thing amidst all this is that although we feel desperately sad each time we hold Sam's wretching body, seconds after he vomits he stares at you and smiles as if nothing is wrong.... he is a lovely wee boy whom we adore, who puts up with so much without complaining - but then he doesn't need to as I seem to have done enough for both!
Thanks for listening!