Blog Levi's Blog

Outside the Bubble

As we entered this week, there was still a question mark as to how long we would be restrained to our room. As the week progressed there was a rumor floating around the ward that we may be able to start taking some “gate leave”, meaning that we would still be in-patients, but able to leave the ward.  The thought itself was extremely scary as we would be leaving the safety of our HEPA filtered, positive pressurised room and taking Levi into the bacterial, fungal and viral filled world outside. The problem for me was both a little of Stockholm syndrome and a little of inconsiderate people coughing in our general direction without covering their mouths. With our continued passage through the hospital grounds this was going to be a real challenge. So the majority of the week was made up of playing dress ups with Levi and his toys as we placed masks over their faces to begin the education of having to wear a mask outside of the ward to minimise the risk of an infection, as any infection could comprise the chances of a successful transplant for up to two years. As Thursday came round, we were greeted by the doctors on their normal morning rounds and were told that the time had come, we were able to take our first day gate leave. We filled in the morning by blowing bubbles and making Lego, until we received the official clearance that we could make a break for it,though it meant that we were only able to break away for a measly 4 hours. But it was 4 fabulous hours where Levi was able to leave the confines of the hospital and see the world, which included birds, ambulances, airplanes and trees. Unfortunately the mask only lasted til the end of the corridor which meant that Levi was automatically confined to his pram with the shade cover over him as form of protection, a compromise that the nurses instructed us to do if he wouldn’t wear his mask.

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When the time our 4 hours was up, Levi was absolutely exhausted as the rear of the Ronald McDonald Apartment backs onto Barker Street, which just happens to be one of the major routes for the ambulances to travel on their way to and from the hospital emergency, and Levi loves ambulances which meant the running back and forwards from the front of the apartment to the back of the apartment. The bone marrow transplant seems to have given him some form of bionic hearing as he can now hear an ambulance en-route to the hospital when they are 3 minutes away. In the interest of keeping our life even more interesting, we took the opportunity to start Jude on some solids, in the form of avocado.
Both boys sat down and enjoyed some avocado together, however, Levi obviously feeling a little queezy, decided to introduce us to a regurgitated avocado as it was launched across the apartment floor. This would have been fine as through this process we have enjoyed been covered in products from Levi’s top and tail, however this vomit included his nasal gastric tube due the sheer velocity of the projectile. So leaving the safety of the apartment, we ran the gauntlet again and headed back to the ward, looking a little sheepish with Levi enclosed in the pram, and me holding his nasal gastric tube. I wondered if they would ever give us gate leave again.
IMG_3043Jayde managed to break free on Friday night to go home to have some puppy therapy as we figured that once Levi was on overnights at the apartment, our chances of just ducking home would be considerable reduced from once every 3 weeks to not at all. As the photos trickled in, my heart broke as Ant’s eyes told me just how much she was missing us.

IMG_4083With the car loaded up, Jayde returned back to Randwick on Saturday to be greeted by bedlam as Levi was given his first overnight gate leave. I managed to fabricate a tower of side tables in order to be able to place his night feed machine and juggling his cocktail of medications for the night, I managed to get him to bed at a “reasonable” 7:30pm. By the time we cleaned up the mess, that would have been more suited to a Tasmanian devil rampage, than a 2 and half year old, I felt that a bottle of wine was in order.

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