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.
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.
In 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.
In 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.