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Park Life & Music

Today we had a big adventure off campus to the local park.

It’s scary enough taking Levi from the isolation apartment to the hospital, let along taking him out into the world.  Levi is allowed to go out in public though we have to be very cautious and selective about when and where we go.  Open air excursions are the best option provided that there are not any other people around, especially other children.  The post BMT rules are very similar to the CGD rules, only more strict, as Levi’s immune system is quiet immature and unable to fight viral, bacterial and fungal infections.  So it is a “no” to barked parks/gardens, decaying leaf litter, exposure to soil, construction sites and stagnant water. Just to list a few of the main offenders.

As it was a lovely sunny Sunday morning, we thought an early start to the local park would be a wonderful choice as Levi’s first excursion.

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Levi had lovely time running around and exploring the park, keeping Oma on her toes & getting Mummy to dry the slide by going down first!!

We got the park to ourselves for about half an hour before some other kids came to play and that was our cue to go.  Levi was disappointed though quiet tired, so didn’t fight going home too much.  Especially since he was going home to Daddy Fun-land…


The afternoon was finished off with a music session.  Jude loved his new bongo’s, that kid has an amazing sense of rhythm!!

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There is a lot of extra work that goes into caring for a child with a chronic illness, though add post BMT care on top of that and your day gets full rather quickly.  It’s been 24 hours since we were discharged and we are already more exhausted than usual.

We love being back together as a family, though being a nurse was not the career path I chose and is something that is taking it’s toll.  Even nurses only work 12 hours a day, with extra days off for night shift.  Levi’s medication schedule run’s from 6am to midnight, the overnight feeds run from 7pm to 7am and that is assuming that there are no extra surprises thrown in for good measure.  In short he is needing something down his NG every 2 hours at a minimum.

Last night, on top of the regular checks a mum does on her sleeping kids throughout the night there were some rather fun discoveries.  As Levi is getting 65% of his daily food intake via the NG overnight, it means that he needs a minimum of 2 nappy changes after midnight to ensure that there are no accidents.  When I woke to check him at 2:30am it was to a bed full of formula!!  Somewhere between midnight and 2:30am Levi’s NG had disconnected from the feeding pump and the formula had been pumping straight into his bed.  From the amount of liquid in the bed I can only deduct that it had been disconnected for at least 2 hours!! Poor Levi was soaked from head to toe and was extremely sticky, oh and the formula stinks.  So an hour later after a sheet, PJ, nappy change and a quick feed, (Jude not wanting to miss out on the action and needing a night snack), we were all back to sleep.

The next morning we had a trip up to C2 North (the day stay ward) for our ‘quick’ blood test, and surprising to Levi and myself it was extremely quick and we were back to the apartment within the hour.  Shocked that we had the rest of the day off together meant that we cold catch up on some sleep as we were all still quiet tired from the nights events.

All the boys were having some quiet time and watching a movie in bed when “crouching tiger, hidden Jude” struck… he decided that Levi’s NG looked way too appealing and yanked it out in his ninja like fashion!!  We were able to save it from coming all they way out, though Jude has a really good grip and it took some muscle to get it back.  “Quiet time” turned into a distressed Levi extremely wary of his little bother and resulted into another trip to the hospital for re-taping of the NG in place and making sure it was still where it should be, in his stomach and not his lungs.

So a “day off” from the hospital still saw us having 2 trips to the ward, just incase we were missing the fun of C2 North, and Levi regularly telling Jude off for touching his “nose noodle”.


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Breaking the news barrier….

Monday greeted us like a bit of a sledge hammer on the news front. Levi initially didn’t want to have anything to do with a new week of getting poked and probed let alone more news relating to his BMT, so he seemed to wrap himself up a little tighter in the towel of denial.
IMG_3060However, after hearing the news that one of the tests to determine what percentage of the donor marrow had actually taken up residence, he warmed up to the week. The doctors couldn’t restrain themselves to let us know that the results indicate that one of the blood tests had determined that 100% of Levi’s recovering marrow was actually donor tissue. Needless to say, that this was welcome news to the whole family as there is a real risk that even with all of the medications, Levi’s body could still reject the new bone marrow. However, the silver lining to this whole cloud is that the donor marrow has taken up residence, and we are hoping that it will be a permanent, infection free residence.Needless to say, this news was amazing, however we knew there was more, as the doctor was beginning to act like a fat kid in a candy store in that she was jumping up and down, she literally burst the joy bubble in the room and provided an even bigger one when we heard the words, “Levi’s neutrophil are operating within the normal range and we can confirm that with the new marrow, he is free of the symptoms of CGD”. This truly amazing news was followed up by the overburdening small print in that with any infection, be it viral (in the form of the common cold etc), bacterial, or fungal could easily regress Levi’s transplant resulting in the rejection of the donor marrow and revert his CGD.
IMG_3062Taking all of the news to date, we then got a further piece of news as we were also told that today was to be our discharge day, so no more nurses on standby with any detection of infection, temperatures etc it would result in a swift visit to emergency. It also means that we now start our regular, Monday, Wednesday and Friday visits to day stay at the hospital as out-patients. With discharge seemingly imminent we began the many trips down to the apartment to empty our isolation room. However, for anyone that has ever experienced a hospital discharge they will understand, having been informed of discharge at 9am, we finally left the ward at 4pm. With mum and dad extremely hungry, having no lunch, Levi attempted to ensure our blood pressure and heart rates remained monitored by performing regular observations on us. Could be a new career for the little guy.

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With everything that happened, we are so thankful to the medical personal that have worked so hard to get the boys to where they are, the research that has gone in to making this possible, and the difference that this transplant will make to Levi in the future, and Jude when he has to follow in his brothers footsteps. With the knowledge that we still have a long road ahead of us for Levi before we can be sure that this transplant will hold and he will be forever free of the symptoms of CGD and that of Jude’s transplant, I am not sure if my finger nails will cope and am sure that with everyday that passes, I am getting more “distinguished” with grey hair. But as we settled in for the night, I am sure both boys dream of playing in the leaves and enjoy growing their own vegetables in the garden; well maybe that is what I like to think. Maybe Levi was dreaming of ambulances, Ant & Belle and Jude was simply dreaming of milk.

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The things we do…

The routine of waiting is now firmly bedded down. We are taking every opportunity to find new and exciting things to do with Levi, from making paintings that reminded us more of Thai elephant paintings, to our ward friend Michelle bringing Levi his own personal scrapbook. Levi was also finding his own entertainment as he began putting his pants on both his head and his compliant little brother.

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As each day progresses, Jude seems like he is growing up fast and has already worked out how to get what he wants from the nurses. He has become very easy with his apparent elusive dimples and is quite happy to flash them at the first nurse or doctor willing to give him any attention. As Levi response to his medications improves each day, he is becoming more and more demanding of our time and has adopted a little too freely the word “mine” as he snatches toys from his baby brother. Though with the cocktail of medications that he is on, we are also seeing some of the crazy side effects, including Levi turning into a little wolf child with a fine layer of hair appearing across his body as a result of the cyclopropane immune suppressant.

IMG_2969In additions to the typical craft exercises that Levi has shown, they have also extended to fun things such as painting and decorating his own guitar, his play mat and, unfortunately, his own little brother. Music therapy is still a major winner though in our isolation room with Levi doing his best rock star impersonation of the music therapists ukulele, so we have decided to put off getting one until he has that out of his system. The highlight of this week though, would have to be the creation of his own music video about Thomas. Matt the music therapist manage to capture a whole bunch of video from the Levi’s favourite item in the outpatients department. Then with the help of Levi on the shaker, put together a cool video that I can see making it to the top 100 for 2014…. well if Bob the Builder could do it, why can’t Levi?!?

Since the start of this admission, we have been capturing Levi’s blood results and charting them to give us an indication as what was going on, under the skin. We keep getting told that Levi is looking fantastic on paper and when you look at his bloods you can understand why he looks good. As we move forward, Levi has consistently being above average and we hope that this continues. With positive energy, loving family & friends and a good team of medical professionals, lets keep him there. For anyone that is interested Hb=hemoglobin, WCC=White Cell Count, PLT=platelets, ANC=Absolute neutrophil count.imageIn preparation for finally breaking free, the nurses have started to train both of us in the correct use of Nasal Gastric tube for both night feeds and the administration of the shopping bag of Levi’s medication. With the amount of medications that he will be on at discharge, it is going to be interesting to see how we go about having any down time as there will need to be a lot of juggling to ensure that they are administered in the correct quantities and at the correct time.

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Puppy Therapy Day




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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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We made it!!

What a long day…

Those that know us well are aware of the usual panic that goes on before we go on holidays, a tornado of last minute angst, tasks and packing. Today wasn’t any different. How do you pack up your life for 3-4 months to accommodate the unknown. It was easier to pack up our lives to head overseas, than 4 hours up the road!!

We hit the ground running at 5am to try and get some of the major things done before the boys woke and Nate headed off to work.  As packing with a helpful toddler is always a challenge, a balancing act of timing and pre-empting the unpredictable nature of a 2 year old.  Sometimes it works, though more so than not it’s a lot of juggling around them and seeing what you can cram into a 15 minute episode of Thomas the Tank Engine, provided he sits still for that long.

Coming into this week was quiet a stressful exercise for us both, and it was apparent as to how stressed out we were when Nate took the fish to their holiday home.  The fish were bagged, tagged and ready for transportation when I had noticed the fish tank sitting in it’s usual spot full of water. I was a little confused, though didn’t really think much of it at the time as I had my own tasks to deal with.  When Nate finally got home it was the embarrassed look that gave away that he had arrived on Sonia’s doorstep with the fish and no tank!!  Many thanks to Sonia for not only looking after the fish, though being such a good sport and lending us your fish tank on a moments notice.

Jude thought in all this chaos that today needed a milestone, he rolled over from his back to his tummy for the first time.  I’m guessing that this roll was done more as a defensive manoeuvre to get away from his big brother than a statement that he was progressing in his development!!  Though it was a timely reminder that this was the last day we would be home for a few months and to take some time out with the boys and just enjoy the moment.

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With the car packed to an inch of it’s life we finally got on the road & made it to Ronald McDonald house and into bed before midnight. I am still at a loss as to how we managed to pull that off. A huge thanks goes out to Miss Christine for looking after our beautiful girls over the next few days, it definitely made it easier on us all.

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