Well, after 107 very long days (and even longer nights), Ollie is home 🎉🎉🎉. We spent almost 1/3 of this year in the hospital and we are ready to start enjoying some summer!!!

Thankfully we can do all of his care at home (TPN, catheters, IV hydration, trophic formula feeds so his villi doesnt flatten out, venting, draining, measuring outputs, medications [almost 30 per day], ostomy irrigations, and food warden). We need to check in weekly and have strict parameters on how much fluid to replace, what to watch for, and when to seek emergency help. He isn't allowed any food for the foreseeable future. 

The next few weeks/months will be an adjustment. His home life looks different. No more nights off TPN (he will now be hooked up to his IV for 13 hours every day), no more family dinners at the table, no more trips to his favourite restaurants, and no more food related fun. Thomas and I are still greiving, but we are going to choose to look on he bright side and be optimistic. 

Ollie is still feeling "Meh" most of the time but this kid is showing us how to suck it up and still have fun. He is angry about not being able to eat, but is determined that this isn't forever. His sparkle is starting to shine through again. We have seen little glimpses of the old Ollie. He will joke around with us when he isn't thinking about food. He LOVES spending time with a little 18 month old boy, Colby, who he met in the hospital. Ollie has endless smiles for him ❤️. He has been playing some pranks on the nurses (always a laugh), and he doesn't seem to be blaming us as much. 

We are still afraid that he will try to sneak food (I know I would!!), so we have to keep a close eye on him. His care also takes a lot of time which he would rather not participate in. Catheters are really rough at the moment and we are looking forward to getting a bladder scanner for home use in hopes of decreasing how many catheters he needs per day. We have no way of knowing if his bladder is empty without the scanner. His bladder is so big (it holds 4L) so it just sucks air in when you put a catheter into it. It doesn't drain by itself so we have to use a syringe to empty it. The problem is that the catheter suctions to his bladder wall which is incredibly painful. He sweats and shakes with each catheter. He has heightened sensation where there should be very little sensation (so unfair!!). Even with the bladder scanner it can take several trips to the bathroom and up to an hour to make sure his bladder is empty. This has to happen several times a day.

Our plan is to get a bladder scanner for home use. Unfortunately it isn’t covered by insurance and there aren’t any charities that cover this weird need. We have found that if he keeps going back to the bathroom and scans each time he returns it can avoid a catheter if we can ensure that his bladder has less than 150mls in it. A bladder scanner will improve his quality of life and decrease the risk of infection which can have an extremely negative impact on his intestine.

He needs one that will scan irregular bladders and they can be up to 30 thousand dollars. We have friends trying to help us source cheaper ones which is so helpful. We are so thankful for our beautiful friend Steph. She saw a need and started this fundraising campaign to help with the expense and the response has been overwhelming. We were super uncomfortable with it at first, but the support is amazing and heartwarming. We have been blown away by the concern, compassion and generosity of friends, family and complete strangers. Thank you so much to those who have shared it and who have had a hand in improving his quality of life. We are well on our way to getting our boy his own bladder scanner! 

It will take a while to get a new normal, but with Oliver's resilience, positive attitude and determination we will get there!!!