Week Four

Four weeks already. It has flown by but also feels like forever. I have different emotions everyday ranging from happy he's doing so great, worried about whats to come and when he will hit a speed bump, angry that this is happening to him, frustrated, teary, numb - you name it. I'm glad it seems to be going by fast, but I hate to race through this, as I feel I'm missing him being a normal baby going through all his milestones.  

Jan. 22 - Day 23 for us. 
Pass home yet again! Bash had a really great day! We had fun playing with all the new Snap Chat funny face filters and just enjoyed each others company.  We also made it through the weekend with no fever! The doctors were sure he would catch something by now.
                                                
Day 24.
Monday. Our primary nurse stopped by the room and gave us a "road map" of our journey ahead. This shows us the next 61 weeks of treatments (best case scenario) - if there are no hurtles we have to jump over along the way. It's really daunting, that's like a year and a half! But it gives us an idea of what we can expect in the coming weeks so we can try to plan our life a bit better. The 'map' shows us when we will be in-patient and out-patient (there are a lot of in-patient it seems). Then the out-patient days we will mostly be in 'clinic' to start out - this means driving to the hospital Monday-Friday and spending most of our day in the hospital Oncology Out-patient clinic. This has got me thinking we should probably relocate ourselves closer to the hospital to make it an easier commute. Our nurse tells us some of his treatment can be done at home and they will send a nurse to come to us those days. 

We get the all clear from doctors to come off isolation today! No more gown and masks, and we can visit the sunshine room (play room on the unit)! The doctors mention during rounds that they're impressed he hasn't had a fever yet and been put on antibiotics by now. They assumed this would happen on the weekend like I mentioned, but Bash remains unfazed by the treatments and is still acting like a happy little monkey. He tried a fudgsicle for the first time today and loved it!

Day 25.
Another good night of sleeps and not too many meds today so day pass! We spend more time at home than the hospital lately which is really nice for all of us. His platelets are a bit low so he has a platelet infusion to bring them up. Grandpa and grandma watched him while Nate and I go out and run some errands (car wash, groceries, Starbucks, and oil change) It feels super odd to do normal life things, especially without Sebastian in tow. 

Day 26.
Another day pass home! He's still doing so well. I went to rounds with all the doctors and was only gone 5 minutes. They said he's doing great, nothing new to report or change. Keep it up buddy! We had a dressing change on his Broviac site and it was pretty painful this time because it was so stuck to his skin. The nurse also cut the sutures holding the line in place as it was healing nicely and they aren't needed anymore. We head back to the hospital just after 7pm as usual to get his meds before bedtime. 

Day 27.
Grandpa and grandma K are going home this afternoon. They are so sad to leave, but want to give us some space at home, and need to get things done back in Saskatoon. They rushed out here and hastily packed things up when this all started. All 5 of us went to the sunshine room where the music therapist sang songs today for everyone and let Bash play with lots of different instruments. His favourite so far is the guitar. In the morning he had the Asparaginase shot in his leg and hardly flinched! He gets more upset when he smells the alcohol wipes they use to clean the injection site haha. Around 2pm we say our goodbyes to grandma and grandpa. Lots of tears and hugs, they're going to miss him so much, but promise to be back soon. The nurse had trouble drawing blood from one of his lines and put in TPA fluid to bust the clot out and hopefully get better flow from it. All day he ate so much! A whole pack of food for breakfast, plus eggs, and for lunch he has some muffin, another pack of food, and 100ml's of a protein shake for a snack.  

Day 28.
Day pass today. Finish up meds and checks at the hospital and get home around noon. First day without grandparents around. The house is so quiet and lonely. It's strange coming home from the hospital without a delicious meal prepared by grandma, and grandpa waiting at the door to snatch you out of the car seat. We play with toys, eat and eat, nap, then eat some more! We FaceTime with grandparents and uncle Scott and Sharisse  before getting ready to head back to the hospital.

Day 29.
Saturday -Pass - Earliest one we have had so far!  We leave the hospital at 1030am. Nate makes us breakfast and then we all have naps and hang times. Today is his last day of steroids for the 'Induction' (or first phase of treatments). We are curious to see if his appetite decreases as this is what has been driving his insatiable hunger. He is also very moody today, another side effect, and I hope this gets better too. At one moment today he was laugh/whining/crying at the same time haha - thats the best way I can describe it.