Tag: Levi

This morning was an early morning wake up call when the fire alarm went off, though the sleepiness was quickly rubbed out of our eyes once we knew what this meant, Fire Engines and Firefighters!!

With no smell of smoke it was pretty safe to assume it was a false alarm, so we waited patiently for the “Nee Oor Nee Oor” to come at let us know we could continue to go about our day.

Once Levi had heard the sirens get closer and closer he could barely contain his excitement and was desperate for us to move towards the sound.  He didn’t believe us when we said we had the best spot to see all the action.  Levi’s eyes lit up as soon as he saw the flashing lights and have two trucks pull up outside the apartment.

What a great start to the day, it gave us lots to talk about while filling in time up at clinic.

With Sunday’s park adventure such a success we thought that maybe we should try an adventure a little further a field.  So we jumped in the car and headed off to the other side of Sydney for a visit with Barbara, Frank & Milo.

Today was Levi’s first car trip since we arrived in Sydney back in early January, to say he was excited to be in the car was an understatement.  I thought he was going to have a conniption with all the buses, trucks and emergency vehicles we passed on our journey over the bridge.

Levi loved having another familiar place to explore and check in on, as it had been 4 months since he had visited and he wanted to make sure everything was still where it should be.  On arrival he did a quick inspection of the house and then got busy with his ‘tasks’…  Making sure Milo the dog was where he should be in the yard and inspecting the interior of the beloved doll house, making sure Barbie’s designs were up to scratch.  Barbie did not disappoint and the doll house was full of some new robust furniture and a barn on the side full of animals.  Ange had also left him a Thomas the Tank engine rocker, which he loved.

First day back to C2 North for clinic with the highlight, trying to catch yet another wee sample.

I’m sure Levi was just loving some nappy free time.

After 4 days of tweaking medications and fluid intake, Levi’s team were happy that they had got his levels to a stage they were sure he could be managed off the ward.  Though just to be on the safe side they gave us another 24 hours as an inpatient just to put it into practice and demonstrate his levels could be managed without IV assistance.

With a successful day passing and a new addition to Levi’s medicine list, we were sent on our way.

As today was suppose to be our clinic day, we thought that tomorrow would be a day off as the original plan was to only go to clinic Monday, Wednesday and Friday. Though we were told that they needed us to come back to the ward for a ‘quick blood test’.  After Saturdays admission we are a little skeptical at what tomorrow holds.  Though this blood test has nothing to do with Levi’s levels, this is the “official” test (GHR) which tells us that he is still CGD free and one that they will repeat regularly.

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.

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.

Well it was a bit hit or miss if we would make it to our first clinic day. Having created a schedule we have worked out that not having a fleet of nurses at the push of a button is actually a lot of hard work! Our schedule means that we have to be doing something for Levi every two hours at a minimum, and that is not even including the fluids that we gravity feed down his nasal gastric tube, nappy changes or food!!

Levi was on top of the moon having free reign of the flat and made the most of wearing a path between his toy mat at the front of the unit and the prime position of the back window to watch the emergency vehicles wizz past. Seeing him running around, we had to remind ourselves that he had recently undergone a chemo treatment and actually had a bone marrow transplant as it certainly wasn’t apparent with his increased energy levels. However it was short lived and the afternoon was made up with a 3 hour nap which gave mum and dad some well deserved respite. His German donor graft is becoming more prominent as the days carry on, there is an efficiency to the little guy that we have never seen and he has acquired a new ability to be very authoritarian around the house. We are not sure if this is to do with the German graft or the fact that he is a 2 year old and has hit that milestone in his growth.

By the time our Tuesday came to a conclusion we had managed to get Levi and Jude into somewhat of a routine, which made a huge difference with Levi’s appetite as he was more likely to eat the food that we placed in front of him when we were eating the same food. In addition, bedtime had moved from a very uncomfortable 9:30-10:30pm with various interruptions from nurses on the ward, we had managed to get both boys down by 8:30pm. This meant that we were able to take the opportunity to watch a movie which was not very successful as we both fell asleep on the couch.

Wednesday was our first clinic day and was, a unique experience. As we were now considered out-patients, everything seemed to move a lot slower and it was almost like the left hand was not taking to the right hand. As we sat in the isolation room in the day stay clinic, it was a tough endeavour with Levi not really having the required space to do his normal running around. So it was a tough exercise finding a not so destructive activity as throwing his toy trains around the bed and fortunately, starlight TV had the good sense to broadcast Rio which Levi thoroughly loved, as did I. After 6 hours waiting for blood tests to be returned, it was time to head back to the unit for the evening, however, we were not considered off the hook as we were required to make a commitment to comeback the following morning.