Byron continues to amaze us and makes us proud and his body is doing such a great job. Just after midnight on a bottle to the pan room run Byrons nurse tells me they have stopped his post hydration fluid because Byrons levels are great! Good to hear because slowly the frequency of the peeing into the bottle will stop too! Byron wakes in a great mood and is interested in some food. Scrambled eggs he tells me. By the time Im out of the shower and its changed to bacon, no eggs! After Breakfast and having watched The Polar Express we head into the playroom. There is another child and mum and brother in there and Byron is hesitant at first but then he continues to walk in, sit down and play the Nintendo ds. Mum goes back to the room to make the bed and when she gets back the other family has gone and he has made a bee line for the play station! Playing The Polar Express on the play station. He plays a few other games too before mum can drag him away to brush his teeth. We have just finished and he decides he wants to stay in his room when Dr Andy, the on-call oncologist comes in to check him out. He advises that hes cleared his methotrexate levels on brilliant timing, his well and no fevers so we can go home. Mum asks him to repeat himself. Yes she has heard right! We can go home! Its totally unexpected and even more exciting because we were originally told 3 weeks we would need to be in for! Then they changed it to possibly a few days after methotrexate finishes, we only did 4 days!! Woo hoo. Byron did a happy dance. The next part was trying to work out how we were going to get home, as Daddy was working over at straddie. Grandma came to our rescue and came to pick us up a few hours after mum called. In the meantime, Byron had his dressing and lines changed and was disconnected from the IV pole. His skin is starting to break open a bit from the constant dressings and then taking them off, so the nurse has put some tegaderm, I guess you could call it a second skin to give his own skin a break and try and heal these areas, especially before transplant. All the talk has now turned to transplant, however with Dad and Mum no getting to see the oncologist on Friday to start our talk, we still dont have a huge understanding of what is the next step. Its interesting because this was really our best admission so far yet today mum felt a bit on edge with everything. Trying to work out a day and time now to sit down with the oncologist has proved a bit difficult and frustrating and mum had a bit of a meltdown over it all, as it seems to keep putting it further away, yet Wednesday they have us booked for an appointment with the radiation oncologist to discuss Byrons radiation and we still have no understanding of the process or transplant. Mum did manage to get over herself though and laughed with the resident dr and nurse and said weve had anaphylactic reactions and toxicity reactions to chemo and Ive been cool but give me a meeting we can find a time to get together to do and Im a mess! Such a sook!!!! He he. Anyway. I know with faith it will all work out. So we headed home with the requirement to call tomorrow to see if we need to go up tomorrow afternoon or possibly on Wednesday before the radiation oncologist talk, that will be information overload if it happens the same day! We left at the wildest part of the storm (as you do?!!!!) and struggled to get all our stuff in mums little car but we got it all in! We arrived home and Byron seemed to visibly relax even more. Byron and Makhiyah spent the rest of the afternoon playing and mucking around together. Byrons a bit more fragile than Makhiyah and a few times that had to be reminded, especially when she climbed on Byrons back and got him right in the lumber puncture spot, ouch! Quite a few tears with that one. It was very late before Dad got home so a quick cuddle and play with dad and then time for bed. We are looking forward to an incident and quiet week with the only hospital visits being those for mum and dad for education. Information is power so bring it on mum thinks so she knows what Byron is in for and how we can best support this next stage, expected to be the most difficult stage yet. He will definately get through this, we have no doubt.
Posted on: Sun, 24 Nov 2013 13:24:13 +0000
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