One year later

Wow, what a difference a year makes!!! Oliver is doing better than we had dared to hope. We had been told that he he would not be able to eat again and would need to 100% rely on TPN (total parenteral nutrition) which is infused directly into his blood stream, can cause sepsis, and is very damaging to the liver. We were also told that he would need to empty his bladder with a catheter for the rest of his life. His future looked bleak knowing that he would spend the rest of his life fighting infections and potentially becoming resistant to all the antibiotics except for two again. The mortality rate from long term TPN is high, and the risks are even higher if an individual is dependant on TPN for 100% of their nutritional needs. 

Coming home was a huge adjustment for all of us. We had always eaten supper together at the table every night and I loved that time together. Oliver was very hungry, unhappy and really missed food so we stopped having dinner together. We would only cook things he didn't like in an attempt  to try and make it easier for him. William understood and didn't complain, but we all missed that bonding time. The first few months were exhausting. Ollie was so hangry and would sneak bites of food. We had to be vigilant all the time and I was often the 'bad guy'. It's a special kind of terrible to have to stop your child from eating when they are begging for food 😞. 

One of the worst parts for Thomas and I was knowing that Ollie had the right to refuse painful procedures, refuse the 20+ pills he takes every day and refuse to catheterize himself. We spent his whole life doing what needed to be done because it was the best thing for him. Having him refuse to do something to keep himself as healthy as possible was extremely hard. He was told that he was not allowed to eat anything at all, that he had to catheterize himself several times per day, had to put a tube into his ostomy and flush his intestine every other day, be hooked up to an IV for 11 hours per day, every day, and take more than 20-30 pills per day. He didn't want to do any of those things 😖. There was a lot of arguing, sulking, tears, stress, infections, IV antibiotics at the children's hospital..... and compromising. 

Ollie found catheterizing himself very painful (part of his genetic mutation is having nerves and pain where there shouldn't be any nerves or feeling) and was SO excited when the bladder scanner arrived!!!! He hasn't had to do a catheter since we got it!!!!!!! He is unable to tell when his bladder is full or empty and so he uses the scanner to see if he has less than 150mls residual volume left in his bladder. It usually takes a few tries to empty to less than 150mls but since we got the bladder scanner he hasn't had another infection and hasn't had to suffer through the pain of catheterizing himself!!!! We are all so incredibly thankful to all of you that made it happen ❤️.

One of the compromises we made was allowing him to chew food and spit it out with the understanding that he wouldn't swallow any of it...... After a few months of that he admitted to us and his doctors that he had been swallowing a little bit with each 'meal'. His goal was to swallow one bite of his birthday meal (he wanted to try beef Wellington) and be able to swallow a couple of bites of Christmas dinner. He met those goals and did ok!!!! We were all so happy ❤️. Over the next few months he kept pushing the envelope and swallowing more and more food. We were very nervous, but Ollie was determined and it paid off!!!!!! 

This kid is amazing!!!! Not only is he able to eat what he wants (within reason) his doctors have been able to decrease the amount of TPN he requires to 11 hours per day, 6 days a week!! Having food go through his intestine helps to protect the liver from the damage that TPN causes. This will help to prolong his liver and push back the potential need for a multi organ transplant (usually what these kids end up needing at some point). 

Almost every day while Ollie was in the hospital he would need to use distraction and focus on something that made him happy. It was always one of two thoughts. The first was home at Christmas and the second was Disney. We talked a lot about disney, the feeling of pure joy when walking into a park, the smells of different rides, the iconic songs and the excitement surrounding the whole place. So it wasn't surprising that he chose Disney as his combined graduation, 18th birthday, Christmas and pity gift. We went in February and it was so much fun!!!

This last year and a half has been a long road but I am so glad to say that there is more sunshine than clouds now. The bumps in the road aren't huge pits and boulders, and there are a lot more smiles. I'm writing this update as we drive back from Vancouver Island after visiting grand parents. It's very smoky outside and we had a detour already, but in this car there are 2 happy kids, two sleeping dogs, three chatting birds, a silent crested gecko and 2 grateful & content parents ❤️