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.

Week Six

This is the last week of my Facebook posts I had shared to keep everyone in the loop, and this post will get me caught up on our last stay in the hospital.

On Day +36 (Aug 12th) we had no more fevers and and nothing else showing up in Bash's blood cultures. He's looking and feeling great! We may be able to start short passes again soon. He learned in the last couple days how to clap, show how big he is, flex his muscles, kiss the air, and will sometimes hold up a finger when we ask him how old he is! Smart little guy! He melts my heart.

Day +37 and we got a pass home for a few hours. Doctors determined Bash has a Streptococcus Salivarius infection, most likely caught from himself as it's a normal bug that lives in your body. He's on the right antibiotic and will hopefully be discharged on Aug 25th. Until then we will be given daily passes between his IV antibiotics he gets every 6 hours. He's definitely on the mend and we can't wait to bring him home for good. 

Day +38 was good. We had a 5 hour pass home which was great! Bash didn't nap or sleep well yesterday so was a bit fussy today. His red blood cells are also starting to dip and he may need a transfusion soon. He was switched to another antibiotic that only needs to be given once daily and we should be getting longer passes. There was also talk about it being switched from IV to oral, if that happens we may be discharged sooner than the 25th!!

Day +39. Bash was very unsettled overnight and tired this morning. The antibiotic he was on causes some GI tract discomfort. He's still teething and his red blood cells are getting low making him cranky too. Thankfully they switched him yesterday to yet another antibiotic that is given once daily over 15 mins and isn't as harsh on his tummy. It was decided not to give blood yet and see if his body will produce RBC's on its own. Oh, and also we were discharged home!!! We will need to go into the hospital once a day for the course of the antibiotics, then just our normal twice a week visits to the outpatient clinic. So happy to be home again! 

Day +40! We are still at home, yay! We had to go in to the outpatient clinic for blood work and Bash's daily antibiotic. His RBC's started coming up on their own thankfully. We get a nurse to our house tomorrow for the antibiotic and go back to clinic again Friday for blood work. Bash is a bit off/not himself, and seems to have some tummy issues. Hoping it's just the antibiotics and not the start of Graft vs host disease. You're doing great buddy, we got this.

Day +41. The home care nurse came today to give Bash his antibiotic. It was so awesome not having to go into clinic, it only took 5 mins! He seems to be feeling a bit better and is getting braver about exploring his world. He's starting to get hair and his eyebrows are looking dark - 'hairy baby' is a side effect of one of his meds. Will be neat to see what he looks like with hair again, it's been so long. We go to clinic tomorrow morning for a checkup, blood tests, and antibiotics. I'm going to start doing my updates on the blog now that we are home, thanks everyone for following along! The thoughts, prayers, and well wishes, the meals, the support, it's all so very appreciated. He's doing great and we are so proud of him. We love you Sebastian!

Small Detour

We thought we were home free but our smooth sailing was interrupted on Thursday (Aug 10th) by some questionable fevers. Bash has been cutting his first molar and when he started feeling warm on our first night home we figured it was from teething. Overnight his temp continued to go up and down, never staying over 38.0 for long enough that we needed to call our oncologist. On the morning of the 10th he seemed happy and we decided to wait and see how his day went before calling and raising any unnecessary alarm bells. In the afternoon though he started spiking again and I felt it would be better to be safe than sorry and called our doctor. The doc asked us a lot of questions over the phone - ie, what was his highest temp, was he eating and drinking, still having wet diapers, etc. As he had thrown up his NG tube at bedtime the night before I was also a bit concerned that he wasn't drinking enough. The doctor decided he wanted us to come in and have him checked out to be safe and if anything re-inset the NG so that we could give him fluids if needed. We packed a bag for the hospital just in case and headed in.

When the doctors saw him they didn't think he seemed that unwell. His temp was 37.7, all his other vital signs seemed normal, and they decided to give him a fluid bolus since he was a bit mottled looking and they assumed he was a bit dehydrated. They also ordered blood work to check his electrolytes. Since he seemed to be drinking and eating ok we were given the option to wait on a re-insertion of the NG tube which we accepted. While he got his fluids his temp started to spike again and the nurses kept a close watch, but his temp came down again. The day doctor decided if his temp stayed down by the evening, and the night doctor assessed him and we got the all clear then we could go home. The night doctor came and Bash spiked to 38.2 and it was decided to draw blood cultures from each of his lumens on his broviac to test him for infections, start antibiotics as a precaution and admit us for the next 48 hours to see if he was 'cooking' anything. They draw blood from both lumens to determine if he has a line infection or if it is just in his body/blood. If it's a line infection it will only show up from one of the lumens. If this is the case then our doctor recommends removal of his broviac line to prevent a re-infection as the antibiotics may not treat an infection stuck to the inside of the line and he will continually get sick.

At the 7 hour mark Sebastian's cultures came back positive for an infection. He started a secondary antibiotic to hopefully cover him as they weren't sure what he was positive for yet. He had a pretty restless night and his temp in the morning of the 11th was 39.1. He was still happy though and eagerly flashed smiles at his nurses and played happily. He continued to take bottles and food so the NG was unnecessary. We could tell he was fighting something only because he was so tired and slept quite a bit. After that morning fever spike his temps returned to normal. The doctors continued to order blood work over the next few days to check for infection and at the 48 hour mark determined he had Streptococcus Salivarius a virus that is normally present in your body and considered harmless in a healthy individual. It showed up from both lines which are good signs it is in his body only and not in a line. His antibiotic orders were changed from Pip-tazo and Vancomycin to Ampicillin and he will get it through his broviac every 6 hours, alternating lines to help kill the bug just in case it is in both lines. The doctors said he can have daily passes in between his med and we should be looking at discharge again on Aug 25th.

This sucks, but we were expecting something to come up eventually and it is very common to spike fevers this soon after transplant. I'm glad my mommy instincts kicked in and I questioned the fevers as we were on the fence about it just being teething. I felt like I was being silly and over cautious, but doctors reassured me you cannot be too careful at this early stage. If we had waited he could have gotten way worse super fast and we could have been looking at sepsis and even an intensive care unit admission. I learned a valuable lesson from this, to always trust my gut no matter what anyone else thinks. Can't wait to bring our little guy home already! One day home was such a tease! 

Week Five - A Rollercoaster Week

Nearly a month and a half in the hospital. Days have melded together and we are lucky if we know what day of the week it is. Nathan's parents stayed with us this whole time and were such a big help! Nate and I got some much needed 'time off' for ourselves in the afternoons, lunch and dinners made for us every day, and a clean house to come home to in the evening for whoever's 'night off" it was - it was really amazing and we are so lucky to have such great support from them. They ended up going home for some much needed R&R for a few days, and came back the day we were discharged home.

Day +29 and Bash's counts jumped up again! He started the day out with a rash/hives, doctors didn't think it was a graft vs host rash and Benadryl seemed to do the trick. If it was GVHD Benadryl would have done nothing. We had an afternoon stroll outside after the rain quit and walked around the unit to help with 'cabin fever'.

Day +30. How is it we've been in the hospital so long already?! (39 days but who's counting). Today Bash's counts went up again, his absolute neutrophil count was 2700! Normal range is 1500-8000. We had a 2 hour pass and went to a nearby park with uncle Jerrad. Bash started testing us the past few nights with bedtime and not going to sleep. Hoping it's just a phase and not med related. Going to ask the docs 'when can we get outta here?!' tomorrow as we are all ready to be home.

Day +31. Bash had his last IV medication switched to oral today! The only thing left hooked up to him is his NG feed which he gets 4 times a day, and he is unhooked otherwise. We got a pass and went to the park again. Still fighting bedtime and going to ask tomorrow if this could be a medication side effect. I tried booking a last minute maid service as tackling cleaning the house before Bash comes home seems daunting. I ended up putting a call out to some wonderful friends who were all able to come to my rescue at the last minute to clean our mess! Thank you, thank you, thank you!!! I am so lucky to have such great friends in my life who at the drop of a hat were able to help in a pinch - I'm not worthy and owe you guys big time! Still amazed every day by the love we are surrounded in. You're doing great baby, we love you!

Day +32. Great day, good numbers, Bash is taking all his meds orally, and he's taking bottles in place of his NG tube feeds! What does this mean? His NG tube might get taken out tomorrow before we are discharged home!!! That's right we all get to sleep in our own beds under the same roof tomorrow! What an amazing rock star kid! And the sleeping at bedtime remains the same, and is unfortunately not med related, just a phase.

Day +33 and we are home!!! It's been an amazing and surreal day. Sebastian loves being home and having the room and freedom to crawl around and check out all his toys. We had a BBQ and Bash actually went to bed at a decent time. At bedtime he downed his bottle so fast that everything came back up, including his NG tube. Thankfully he is taking bottles, we aren't worried and may not need to put it back in. So happy to all be together! We still have a long road ahead of us but the road to recovery is so far sunny and warm. So much love for you little man we are so excited to have you home!

Sebastian started Day +34 with low grade fevers off and on. We think he is teething and debated whether we needed him looked at. We ended up calling our Oncologist and he wanted him in for a checkup. Bash spiked a temp of 38.2 during checkup and it was decided to admit him and start fluids and antibiotics as a precaution. Blood cultures were taken and as long as nothing shows up in the next 48 hours we will hopefully be discharged Saturday night or Sunday. Better safe than sorry, just a few more days as inpatient. Being home for less than one day was such a tease. We'll get there buddy! 


In the hospital for Day +35. Bash continued to spike fevers overnight and temp was 39.4 this morn. His blood cultures showed an infection and docs added another antibiotic to his mix. We will be in the hospital for at least two more weeks for antibiotic treatments. You wouldn't know this kid is sick though, he was flirting with the nurses and even blew a kiss at his doctor today!!! What a little ham! He loves the attention. A small bump, the suns still shining bright though.