Home Free! (Day 12)

With excitement and jubilation, a day filled with pomp and ceremony, Kez is finally home!  Yippee!

Since last Thursday we have had an incredibly exciting time.  Friday started with a good, big, normal poo! A few doses of fresh kiwifruit juice helped it all along.  Friday’s heart scan, undertaken by a Cardiologist Fellow, came up completely clear, no growth, no sign of anything, nada! Excellent.  Thus far every blood test for the last 6 days has shown improvement meaning that Kez was back to normal health.  With an improving energetic nature, she was very keen to leave the hospital, rather than stay in bed any longer.  We ended the day with a request to leave and were rushed into a meeting with the ward director.

This was a very tense meeting because a number of issues were brought up.  The results of the heart scan were covered, and in conjunction with the infectious diseases experts they were advising an additional 5 weeks on in-hospital antibiotics treatment.  This was quite unsatisfactory as any time out of hospital for Kez is good, especially as the only reason they gave was to be able to administer a 6 hourly IV antibiotic.  We made it clear that we felt competent to do this at home because of our training to do the IV Vitamin C.  A second, probably more important issue arose that the meeting.  Over the course of the week, while we had been administering the IV C, word had gone around the inner working of the hospital, and unbeknown to us this was a big no-no.  Not only was the issue of parents accessing an IV line against hospital policy, but the use of IV C within the walls of the hospital was a prohibited activity! Unbelievable! This was a very interesting discussion as we were adamant that we would not cease use of the IV C.  An additional, even more interesting issue was brought up at that meeting, the status of Kez’s tumor activity.  It was declared that ‘even though [in October 2010] she had increasing, growing, active tumor cells  ‘in very rare cases such as this’ the chemotherapy is so effective that the tumor can go into a remission all on its own… ‘ while also declaring that ‘IV C is totally ineffective and is based on psudo-science’…  as has been previously noted the catecholamine markers are bouncing around normal, not ‘perfect’ yet, so this could indicate some tumor activity requiring continued vigilance.

An additional meeting was held on the Saturday morning with the infectious diseases expert, and the heart expert.  Both recommended removal of her Hickman line due to the fact that it was infected with a bacteria, the removal of the line would consequently cease the IV C administration.  After a discussion about our desire to see Kez having a good quality of life, and that staying in the hospital would not facilitate this goal, and the requirement by the hospital to administer the antibiotics by IV line, we agreed to have the existing line removed and a single lumen Hickman line inserted.

A compromise was reached that suited all parties, they send us home, we do the IV antibiotics at home.  easy!  So, after twelve days in at the hospital, and having administered 9 IVC doses of 25g, we have a happy, hungry, healthy little girl back home, and having had 11 months out of the hospital, we look forward to not going back again!

Thank you for all your prayers during this time, we know they have made all the difference!