Permacath 2: Return of the Line

So,  where were we …

At the conclusion of our last instalment, Max had just had his Permacath central line removed. After two weeks of ‘plastic line in body’ free time, he was readmitted to hospital to have another Permacath line inserted. This time, thankfully, it was in a much better position than the first.

Permacath...Take Two

The hospital atmosphere during this stay was rather melancholic. It was the final few days before the new RCH was opening, and the now old hospital was to be closed down. Max, incidently was the second last patient, EVER, to be seen in the operating suites. That must be classified as ‘some’ sort of achievement!?... It was a weird feeling leaving the hospital with Max after that admission, considering all that we had experienced there over the previous three or so years, and realizing it was to be the last time we would set foot in it…..ever! 

Max recommenced photopherisis treatment twice weekly in the new Day Medical Suites, which are now next door to the Day Cancer Outpatient Suites. The new hospital is an amazing building, full of much natural light and colour. However it is also very spread out so it was great having his photopherisis treatment so close to where we saw his Dr’s, as it didn’t require a huge amount of walking power from us. 

Meerkats...on top of Max's head!

Fishies!

I remember thinking to myself, “gee I’d really like to see the new inpatient Cancer Wards as they are supposed to be really flash”. In hindsight, I know you should always be careful what you wish for… as within two weeks on Dec 9th  we were able to experience the new hospital in all it’s glory. We took Max to Emergency with 40C temperatures and a low BP. We stayed two days in emergency, before a bed became available on the ward. Those green chairs do NOT make for a comfortable bed!

ER

Room with a view

Thankfully we were discharged on the 13th Dec, only to be back again the next day for his twice weekly photopherisis. 

Max had been complaining on and off for some time that his permacath was hurting him; particularly at the site where it was stitched in to him. I had mentioned it to the nurses on previous occasions, yet it was not really addressed. 

During one of his weekly permacath dressing changes, I demanded the nursing staff to look ‘closer’ at the area where the permacath was FIRMLY stitched into Max. I urged our favourite nurse ‘Big Dave’ to please cut one of the two stitches off as the plastic was digging in to Max, so much so that his skin was beginning to grow over the stitched in tabs. Once one of the two stitches were removed it was now clearly seen that Max had developed a huge pressure wound. My heart sunk to think that Max, for so long, was putting up with the pain that this must have been causing him. 

To ease the pressure and help heal the wound, special pads impregnated with silver were put under the offending area before the dressing was replaced. Thanks to the magical pads, the pressure wound resolved itself within a week or so. 

‘Big Dave’ used to refer to Max’s skin as being Teflon coated. He was spot on. Nothing easily sticks to it. This made for many troublesome and often worrying times with regards to maintaining the safe coverage of his permacath entry site. We had experts from nearly all relevant departments offering their advice on the matter. No perfect solution was ever found. The dressing would last only a few days at best, with constant running repairs required. After numerous trips to the hospital just to have the dressing changed, Tim and I became totally fed up. I knew I could do it myself. I had watched it being done countless times. How hard could it be? So I decided to perform Max’s dressing changes myself at home. It was far less stressful for Max, and I felt so much more confident in myability to do it just how I felt it would work best. It was a win-win situation for all! Even during one of our many hospital admissions since, a number of nurses complimented me on how well I did the dressings – it was a fancy ‘old-school’ technique that none of the newer nurses are taught anymore. My head did swell a little!

Nurse Bee

Half our pantry however, had become a pharmaceutical warehouse: Dressing change kits, boxes of sterile gloves, packs of cleaning fluids, bundles of Tegaderm and IV3000 dressings etc etc etc…

Pantry / Medical supply unit

Christmas 2011, like all Christmases, was a very hectic time. Max had much fun and was showered with gifts. 

A very special one being from the Ronald McDonald house…a brand new bike with complimentary helmet! He is still yet to learn how to ride, however, when the time comes…we’ll be prepared!!

Brand new bike

As mentioned in a previous blog, we began serious house renovations the same day Max was admitted to hospital back in August 2011, an unfortunate coincidence. During the period of the renovations, we spent a lot of time in hospital, but during the times we were out of hospital, we were fortunate enough to be able to stay with my parents. Thank you again Opa and Oma! On the 5th of January we spent our first night in our ‘new’ house. After four months, it was so nice to have a ‘home’ again. Things were on the 'up'.....or were they???

Next installment: Infections, clots...Permacath line says "No more!"