Frustration is the only word that can be used for the current phase of Levi’s treatment.
While it is great being back together as a family unit again, sleeping under the same roof and just being able to hangout together without interruption. This is where Levi’s treatment is starting to get to a frustrating stage, the structured phase of the treatment has come to an end, and now treatment is guided by what is going on with Levi.
Levi is now classed as an outpatient, though being an outpatient means that we seem to spend more time on the day stay ward than we ever did when we were allowed out on gated leave!! With the planned discharge schedule of going to all day outpatient clinics on Monday, Wednesday and Friday; this seems to have blown out to the days that were considered our “days off” from the hospital.
I know that we are still in a delicate stage of Levi’s treatment, however it is hard not to get disappointed when you go into an isolation room with none of the things that kept us all sane whilst admitted to hospital. No cupboard of toys, musical instruments, arts & craft supplies or play/music therapist at our beck and call. Not to mention trying to keep up with Levi’s medication schedule, hoping that you have remembered to pack everything in order to administer the many variations of medicines and fitting in around the medical team schedule and hope they don’t ask you to do a test that can add another 5 hours to your day….sigh. Yes the days are long and tedious and even harder to endure when you can see a glimmer of “normal” at the end of the tunnel.
The only saving grace is that we are staying on the hospital campus, I can not imagine living on the opposite side of Sydney and having to add the stress of travel, parking etc on top of a very long and frustrating day. Especially if you have forgotten something or have finished clinic for the day, only to be called back an hour later.
I’m grateful that both boys can make the best of any situation and take the new “routine” in their stride, as long as we are together the boys seem content with their surrounds.