Day +1. Bash got a nasogastric tube inserted so we could feed him and give him medications more easily. The nurse only had to try twice to insert it. He was upset, screamed bloody murder, but he got over it fairly quickly. I thought he would pull it out right away but he didn't! We used less tape on his face this time and left it alone so as not to draw more attention to it and he seemed to have forgot it was there after 5 mins! He's started to get sore white looking spots in his mouth and we were told we may need to start pain control drugs soon. At 2 in the morning - great timing guys thanks - he got a chemo drug 'pulse' (Methotrexate) to help to continue suppressing his immune system and help the new bone marrow set up shop. It's given on day +1, +3, and +7, and is a much smaller dose than he has received in the past. He's doing well and our transplant doctor is impressed with him. Such a happy kid!
On day +2 we got an hour pass and went outside to the park and played some mini golf! We were very surprised to be 'let out' as we figured Bash would be feeling quite terrible and since he has no immune system, on lock down for the next month at least. His doctors were happy he was feeling so well, and I think everyone thought by today he would need continuous pain control but he only needed Tylenol here and there. Bash had not pulled out the NG tube which was amazing, and even though he wasn't eating we could give him nutrition through the tube and not worry about him losing weight or being on IV nutrition which can cause strain on his liver that is already taxed with the transplant and drugs. His energy remained up, and he also said his first words today! - Dad and Ball! Stinker was supposed to say mom first! Love our little superhero.
Day +3 and Bash had a pretty uneventful day, no pass outside as it was rainy, but we played lots in our room. His platelet count dropped quite a bit in the last few days and he will need a platelet infusion soon. He got another Methotrexate pulse, again late at night, the timing in the hospital for things really sucks sometimes, especially with a baby who wakes so easily. NG tube still in which is awesome. Love you bud! Your doing great.
Poor Bash started Day +4 with a low grade fever and a big vomit all over the parent bed. Mucositis is showing up in his mouth so doctors put him on a continuous morphine infusion for his pain. He had a button we could push to give him extra too if we thought he needed it. His fever started spiking in the afternoon and he didn't want to play at all, just cuddle and sleep. His platelets and red blood cells were low and we expected them to completely tank by the next day, he would more than likely need both infused in the morning. Blood was drawn from each of his lines from the broviac to test for an infection antibiotics were started, and we were put on isolation - this meant the nurses would gown and glove up before coming in the room. He got Tylenol around the clock to help the fevers. The first road bump sucked but was to be expected. He's a fighter this one, we love you so much bud. We got this.
Day +5. Bash's fever broke just after midnight. He slept well and woke up a happier guy. He was still a tad nauseated in the morn and puked all over the day bed again, then proceeded to play in it lol. His platelets and red blood cells were both low and he got infusions which perked him right up. Wednesday is pizza night at ACH and he even had a bite or two! Then ice cream for dessert. We are so glad he's feeling better!
Day +6 and Bash is doing well. He had a huge diaper blowout this morning and got all his IV lines covered in poop! It was so stressful and I was super worried he would get an infection from the poop getting into his IV lines. After cleaning him up and changing out all his lines, he got platelets again as they were still very low. We held his enoxaparin shot too as we don't want to cause bleeding - he still gets this as a prevention of blood clots forming in his broviac and because he still has a blood clot in his leg from his very first femoral line he received in Saskatoon when he started treatment. We dropped his pain medications down as he didn't seem to need as much. Then we got an hour pass outside and enjoyed the +29 weather. The sunshine felt so good and it was so awesome to get out of the stuffy room for a bit! Keep it up bud! Love you.
A week since transplant! Day +7 started with another diaper blowout, I believe all lines had to be changed again, but no pukes. We got a 2 hour pass and went outside for lunch. Bash got a Methotrexate pulse again to help continue to suppress his immune system. Platelets were low but no need for an infusion. Still no white blood cells so he remains at zero for immunity and I continue to be a crazy OCD mom disinfecting everything in sight 24/7 - seriously I would 'Cavi wipe' everything in the room (door handles, light switches, call bell, all the vital sign equipment, the window sill where Bash played most of the day, literally anything that was wipeable!). His blood pressures were high through the day so we tried a slight increase with pain meds overnight to see if pain is the cause. He was tired but doesn't seem to be in pain. What an amazing kid we have!Ok so there you have it - week one...
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