#ViJuFooMum and Dad are always telling me that I shouldn’t put things in my mouth and up my nose, though I don’t think the nurses know the rules. As today the nurses put a tube up my nose and stuck it to my face. If that wasn’t bad enough, it took 8 attempts to get this new accessory!!
Lucky I’m a very forgiving person.
What a difference 24 hours makes!!
It would appear that we have turned a corner… from our sad unhappy little man of the past few days, we have silly, crazy, happy Jude back!! I can’t tell you how much we have missed him!! Our little showman is back to entertaining all who enter the room and is very much back to being like the puppy in the pet shop window, desperate to win you over with his antics.
Though with a better mood it doesn’t mean we have been drama free, with Jude’s central line deciding to give us a scare. Both of Jude’s lumen’s decided to get harder to draw back on, which meant that when they were trying to take his daily bloods for testing, his blood wasn’t flowing as freely as it should. The white lumen had a visible clot that could be seen in the line and his red lumen had his blood clotting as it was coming out of the line. This can be common, so we were told. The first step was to run some anti-clotting agents down the line called heparin. Unfortunately they didn’t do the trick, so we had to call for something a little harder hitting and a little riskier called urokinase. The positive about having urokinase in the lines was that Jude had to be unplugged from his machines so that the anti coagulant could just sit in the lines and do their thing. So Jude was unplugged and free to roam his room for 3 hours!! He made sure he took full advantage of the situation, and explored all those things that he had been looking at though unable to touch. The good news is that it worked and we now have a full functioning central line again.
On a quiet rainy Saturday morning in Randwick there was a buzz of excitement in the air, as there was a very special visitor coming for morning tea. Ronald McDonald house was sparkling, morning tea was baking and their was a security team doing a sweep of the house and surrounding area. As this was the first time a visitor to the house had brought such a entourage, we wondered if it was just the guest we were told about, or if some royals might be popping past as well?! Yes, I am guilty of starting that rumor, though also knew at the back of my mind that it was unlikely as Wills & Kate were finishing up their tour of NZ, though it was fun to speculate.
Royals aside, Jude and I were lucky enough to attend a very special morning tea with the Governor General and his wife.
The GG had a tour of the house and gave a lovely speech, once the “official” part of his visit was over he and his wife were able to relax and have some morning tea with the families staying at the house. Neither Lady Cosgrove or the GG could resist Jude’s charms and both rushed to be the first to greet him, with Lady Cosgrove winning some cuddles with Jude, while the GG was sent to another table.
It was a lovely morning and equally as nice to meet Sir Peter Cosgrove and his wife, Lady Cosgrove.
* Photo’s are courtesy of the Governor General’s office, www.gg.gov.au
After a double dose of clinic today we thought it might be nice to do something outside and away from the hospital campus. So we jumped in the car and headed down to Coogee for dinner at the beach. It’s hard to believe that after spending the last couple of months living only a stones throw from the beach, none of us had actually ventured down before tonight. It was nice to do something a little normal and different.
Over the last week Levi has been pining for his fur sisters. So after careful consideration (not really that much though) we decided to relocate the girls to Sydney, so that they could be closer to us. As they are both registered pet therapy, Delta Dogs, we had the luxury of them actually allowed onto the Ronald McDonald House property and able to come into the apartment for the day.
Levi had begun asking about the girls on a daily basis and walking around the house with his two stuffed puppies under each arm. We had often caught him patting each one and having a long conversation with his stuffed version of Tee-Tee & Belle-Belle, so we thought it was time for the girls to make the journey.
Nathan pulled the short straw on the 12 hour return trip to Canberra and headed straight home after clinic and returning the following morning with the most wonderful gift for Levi. As Levi stood at the front door, his facial expression was one of “is this really happening?” as Belle and Ant thundered into the apartment. Levi had a new lease of life and was beside himself that his sisters had made the special journey to see him. He spent the morning running around after the girls and continually hugging them at every opportunity. Jude was also in a state of joy as he made a grab for Belle as she ran past.
As the morning wore on, Levi was in desperate need for a nap and the only way this was going to happen was if his two stuffed puppies were to be replaced by the real thing. Once he was fast asleep, the girls snuck out and had some quality time with mum and dad as we knocked back a nice cup of tea.
Unfortunately the Ronald McDonald House reception for furry family members or Pet Therapy dogs does not extend to overnight stays so as the evening wore on, Levi bid his farewells to the girls and Nathan took them over to St Ives. The departure was slightly delayed due to Jude acting a little funny and deciding to vomit without a break, however it eventually subsided and we didn’t need to take a trip to ED. A special thanks to Robert, Glenn, Zane & Luke for opening your house and hearts to our girls and for the amazing updates (video and pictures) of the girls in their holiday habitat and with their new boyfriends.
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.
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.
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!!
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”.
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.
