It seems our little guy was not happy with the service provided in his $600 a night room on The Variety Ward as his latest admission has taken him straight into an isolation room in ICU which I’m sure would be more than triple this figure. I’ll keep you posted when we next get our Activity statement from the Health Fund. One day, I too would like to stay in a room that costs around this figure without all of the medical paraphernalia and stress. I guess it’s another reminder of where some of our taxes are going, into a health system which whilst not perfect is pretty good. Enough of the rant I’ll take you back to where we left off.
After a 2.5 week hospital stay to sort out his feeds, bowels and bones we were finally discharged last Thursday. As I mentioned in the previous post the bowel scopes revealed nothing significant and despite these results they were still keen to change his feeds to see of this would assist his diarrhea. That process took two weeks from the time of admission to have some gut rest, be fed nutritionally via TPN, complete the Endoscopy, Colonoscopy and biopsies, and try out his new Carbohydrate free feed. At the end of this two week period we had a lovely weekend of day time gate passes attending BBQ’s and Baby Prom shows at the Opera House. At the start of last week he had his bisphosphenate infusion in hospital which was to help strengthen his bones and was kept for a further 48 hours of observation. During this time he spiked another fever which is a really common side effect of these drugs. This kept is in for a further 48 hours on IV antibiotics and we were discharged last Thursday with his new, Carbohydrate Free Feed. This involved weighing 2 different types powders and blending for 5 mins each evening in preparation for the following 24 hours of feed. Another great task to add to the end of day medications……NOT. What they hadn’t factored into the recipe is that these bottles of feed were being shaken and placed through the pump every 2 hours overnight in hospital, something that definitely wasn’t going to happen at Club Marinella.
By the morning the mixture thickened to something resembling concrete and the contents greatly gluggy and reduced…..I’m talk about his feed, not the risotto I made. I know this not just from the feed left in the bag but also what his stomach rejected each morning over the weekend. I did make a suggestion that perhaps the hospital needed to provided a slushy daiquiri machine to keep the mixture light and aerated but they didn’t seem to think the hospital board would come to that. I’m sure it would have been another first for our little guy.
Despite the unsettled and sleepless nights at home as a result of the previous hospital stay we had a very social and fun weekend filled with his Aunt Nic’s 50th Birthday Party and Nanny Sue’s 70th Birthday Party. Monday was spent sorting the feeding problem out over the phone and also a visit by the Oncology hospital nurse for some IV antibiotics. By Tuesday afternoon it was ICU.
He woke yesterday (Tuesday) morning with his daily vomit, only this time bigger and as the morning at home progressed his temperature spiked, oxygen requirements grew and he became quite unwell. Over the course of the afternoon his condition deteriorated quite rapidly, his temp and heart rate up and he was really labouring to breathe, all of which was enough to land him in the deluxe isolation room in ICU for the first time. Apparently he currently holds the record for having the most rapid responses without actually being transferred to ICU- they stopped counting at 3o they said. But enough of the flippancy, to be very honest the poor little guy is pretty sick at the moment and doing it tough.
Whats causing all of this?? We’re still waiting for all of the blood results to come back in for any virus’s or infection, and they could take another day or so, but thus far they are clear. There’s a possibility that he aspirated when he vomited which may possibly have pushed his lungs over, but the most likely and probable cause at this stage is chronic progressive lung disease as a result of his NPC. I’ll keep you posted, in the meantime a few pics xoxo
My toothless Tiger
Some Happier Hospital Days
My Party Boy Out and About
Finally, not to be outdone by anybody in the cute stakes, tiny Tom