Blog Levi's Blog

One step back…

After a long week of outpatient clinics we were looking forward to the weekend; Nan & Pop were coming for a visit and we were really enjoying our own space, so we were craving some more family time at the RMH apartment.


Friday’s clinic had revealed that we wouldn’t get the entire weekend away from the hospital, as they were worried with how Levi’s levels were looking, even though physically he was doing well.  We were told we would need to come in for a blood test on Saturday and Sunday just to make sure his levels weren’t doing anything too strange.

On Saturday morning Nate & Levi did the quick trip up to the ward for the blood test and returned 2 hours later with all squared away for the day.  We were getting ready for lunch and looking forward to hanging out for the rest of the rainy day, only to be called back to the ward…


The blood test revealed that Levi’s potassium levels were quite high and they thought that the test may have been compromised, especially in comparison to tests that were done the day before.  They weren’t willing to admit that taking a prick test from a little boys finger who had just eaten banana had anything to do with it, so they collected blood from his central line this time to be on the safe side.  While Nate & Levi were up on the ward for the second test they had also off handedly mentioned to “Get comfortable, as your staying on the ward until we can get Levi’s levels right.”  Apparently Levi’s electrolyte levels were also at extreme ends of the spectrum, so with no warning we were admitted back onto the ward.  This is where the fun began…

Since we were admitted on a Saturday it meant that all our files were in a unobtainable compactas somewhere and it was as though the areas that made our lives easier didn’t know about us anymore, even though we had only been discharged from the ward 4 days earlier and spent over a month on the ward!!  The nurses and doctors didn’t seem to be on the same page, asking us to do the same tests that had already been done and forgetting basic BMT protocol.  Pharmacy wasn’t able to dispense any of our medication, that should have been common to any oncology ward?!  The kitchen were not accommodating a post transplant diet and the formula room was unable to prepare any of his overnight feeds as they didn’t have adequate notice, none of this was sorted out until Tuesday!!

Nate was ready to spit the dummy when the doctor decided to request a clean catch urine sample just as Levi was getting ready to go to bed. For anyone that doesn’t know what a clean catch is, it is basically mid-stream. So Nate spent the majority of his evening ‘patiently’ waiting and failing to negotiate with a 2 and a half year old to pee into a jar. At around midnight, he had managed to capture it as it shot into the air like a fountain. The nurses were extremly impressed with Nate’s nimbleness to bound across a room and catch the mid-stream, I can confirm that Nate was far from impressed with the whole situation.

The frustration didn’t stop there unfortunately… The isolation room we had this time was not the usual room used for post BMT patients.  Which meant that majority of the staff on the ward seemed to forget why we were in isolation and we had to be vigilant, as the door was being left open quiet often, staff were not using the specific hand sanitizer before touching Levi or his own equipment i.e. thermometer.  The room itself was quiet unloved and not as nice as the usual BMT room that we called home.  Poor Nate had to endure a fold out bed a quarter of the size of his last one and spent more of the night falling on the floor than sleeping on the mattress.  All the decorations, toys, favorite food and things that made Levi comfortable had to be brought back up and there was no storage or food hatch.  We were extremely grateful that we were staying on the hospital campus at this point as there was a well worn path between the ward and the apartment retrieving all the things that we should have had access to on the ward.

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