Blog Levi's Blog

Day minus 3

It’s amazing how many people “work” for Levi, he has a cast of what feels like thousands working tirelessly for him to make sure he is happy and comfortable during his treatment.  There is not a part of Levi that isn’t considered during this process.  Yes there are those we see on a daily basis, his nurses, doctors, dietician etc, though there are also many in the background analysing Levi’s vitals, blood cultures and medicine levels ensuring that all runs seamlessly.

Let’s take today for instance; once the doctor’s do their rounds with their teams in tow (nurse, clinical nurse consultant, dietician & pharmacist), the day is filled with all sorts of visitors all vital to Levi’s wellbeing.  This morning we had the Physio pop in and work with Levi to make sure he was physically not losing any condition and doing the normal things you would expect a 2 year old to do.  Next his social worker came past to introduce us to his ward granny, a volunteer designated to helping us out and support the family by playing/sitting with Levi or taking Jude, as little or as often as required.  The play therapist also popped past with some art & craft supplies; though they also will help Levi through any procedural phobias he might be having through play.  All the while his room has been cleaned within an inch of it’s life, food has been delivered and taken away and the nurses continue with routine observation and administration of medicines.  Life on the ward is busy, even in isolation and that was all before lunch!!

This afternoon it was Levi & Jude’s favourite time of the day, when the Music therapist pops past for a jam.  Both the boys love signing, dancing & playing musical instruments in extremely creative ways.  Today Levi thought the best way to play a ukulele was by placing it on a 45 degree angle, driving a toy fire engine up and down the neck along the strings onto a drum.  It definitely made for some interesting sounds.

Today there was some added excitement, when one of the lumens on Levi’s central line stopped working.  This concerned us a great deal as we had a bad experience with Levi’s last central line, which required quiet a lot of attention and failed 3 weeks after being inserted!!  Given that the central line administers/monitors all of Levi’s medicines and level’s, we were quiet anxious, as we hadn’t even made it to transplant day yet and it looked like we were loosing a line!!  We were assured that this is routine and to be expected, after 8 hours of trying every trick in the book, the blockage in the lumen cleared and we all breathed a sigh of relief.  So it looks like we will make it to transplant with 2 working lumens…hooray!!

Many thanks to all those people who help to make Levi’s life comfortable both directly and indirectly, you all work so hard at what you do and we appreciate it more than you know.


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