Days +50, +60, and +70

August 26th was 50 days post bone marrow transplant. We made it halfway through the acute phase of transplant! He is doing so awesome! He finished his two week course of antibiotics Aug. 25th and we started visiting the out patient clinic twice a week instead of daily. He is loving the freedom to crawl around the house and we are scrambling to baby proof everything. He is so close to walking unassisted. His favorite thing to do is have you walk him around the house and he enjoys pointing at something and having you tell him what it is over and over. My dad and his wife came to visit us for a few days, we had a BBQ to celebrate their recent marriage and Bash making it to 50 days. The weather was perfect.

Bash has had high creatinine, urea, and potassium for the past week and every clinic visit the doctors have asked us to get him drinking more and more. August 29th we visited clinic and it was decided an NG tube should be placed again. This was super frustrating for me as Bash had just started eating again and I felt I could give the extra fluids he needed by mouth. The doctor disagreed unfortunately. He has been given extra fluids via IV over 30 minutes through his broviac every one of our clinic visits as his kidneys are working too hard and could be damaged if we don't flush his system. He has also been given a drug to help his body get rid of the extra potassium called Kayexalate and he hates it. It doesn't taste like anything but is very chalky. We mix it in at least 50ml of water and he usually spits it right out. The one benefit of having the tube is we can give it to him through it and he doesn't have to swallow it - he doesn't even know!

I cried like a baby when they put the tube in, Bash screamed bloody murder the whole time too. I really felt like a failure and it felt like the hugest set back. I knew with the tube in he would regress back to not eating which has happened. We have been told by a family friend that has had a tube in before that it feels awful, anything they swallow seemed to stick to the tube going down making him gag so its no wonder Bash doesn't want to eat. Even with the Kayexalate and the extra fluid his potassium remains high and every single visit they ask us to increase his fluids more. Currently he needs 1600ml per day, that's 1.6L! That is more than I drink in a day! It seems crazy to me that we need to push that much fluid into him and it is a full time job making sure he gets it all in by the end of the day. The last time they asked us to increase his fluids I flat out said no, lol. I know he needs it, and obviously do my best to make sure he gets as much as possible, that being said I am up three times a night with him for bottles and then am spending another 30 mins putting water through his tube. During the day we try to get him to eat, then give him a bottle and top him up with water so that he gets at least 200ml or more every couple hours. It's tedious business.

Its actually a vicious circle as the medication, Cyclosporin, that helps prevent rejection of the new bone marrow is what is causing the stress on his kidneys. We were weaning it slowly but stopped weaning it when the results of his chimerism came back showing he has 100% donor cells (awesome!) but that no fighter white T-cells or B-cells have been produced yet and once those come in there is a higher risk of graft vs host disease and in order to prevent that we need to keep his current dose just in case. Once those cells show up we can start weaning Cyclosporin again, hopefully decreasing his potassium, which will then allow us to decrease his fluids and then finally we can remove the NG tube and get him eating again. The waiting is agonizing. I'm sure later on it will seem like it went by fast, at the moment though time seems to be ticking by so slowly. There are many worse things that could be happening, and that other parents in this situation are dealing with and I need to remember to count my lucky stars. It's just fluid, even though I'm upset over it and losing sleep, that's it, it's not such a big deal and in the grand scheme of things, it is nothing compared to what others could be dealing with.


September 10th we had a great day with family at the park. Nate's parents, brother and sister came down to visit us for the weekend, his aunt and uncle from Red Deer were also in town, and we had been long overdue to spend time with cousins that live in the south end of Calgary. Everyone gathered at Prince's Island park, and Bash got to see his cousin Sam who we used to go swimming and have play dates with before he got sick. It was a fun day and so good to have everyone together!

On Friday Sept 15th (Day +70) we had a follow up ultrasound to check the status of Sebastian's blood clot that is still in his right leg. We will get the results on Tuesday this week. We had blood drawn in clinic the same day and the nurse could not get blood from one of his lumens, it was blocked. They put in a clot busting drug called TPA and waited 24hrs but it was still blocked. We had a nurse come to our house to check it again today but it is still blocked sadly. The nurse put TPA in the line again and we will check it in clinic again tomorrow. Crossing all fingers and toes that it un-blocks as a blocked line would mean they will need to have surgery to either replace or remove the broviac line completely. He may only need the broviac for another two months if all goes well, but if he needs blood drawn without the line then he would have to get needles in his arm which I can't see him being very thrilled about.

In other news, Nathan is starting back to work today! He is going back just 3 days a week to start, which is great to ease him back in. It is going to be so strange not having him here with us, and going solo to our clinic visits.