Septic showers ain't fun!

(March - April 2012)

At the end of our last update, Max had successfully undergone a circumcision. Although rather tender 'downstairs', he was recovering very well. Everything seemed to be going along 'happy chappy'. However, the next week (March 22nd) during his weekly photopherisis treatment, Max suffered from a serious septic shower. It was horrid!

This is a summary for those that don’t know what a septic shower is: 

“A septic shower is the sudden systemic influx of pathogens that have colonized in an inserted device (central line), instigated by the infusion of fluids into the device, and causing septic shock in the patient. This is a life threatening condition and requires urgent medical attention”.

Max was laughing with Beth the Music therapist one minute…..then he collapsed with vomiting and diarrhoea the next. ‘Big Dave' our favourite pherisis nurse, bless him, knew immediately what was happening.  He called for the MET (Medical Emergency Team) and within literally a few minutes the room was filled with ICU staff, emergency staff, Dr’s, nurses…Max was hooked up to electrodes, BP monitors…the works. I had NO idea of the extreme seriousness of the situation. Max’s blood pressure was as low as 52/10! If you look up any blood pressure range chart you’ll see Max was, well…not in a good way at all! 

The medical team were unable to control his blood pressure…each time they gave him a bolus of fluid to push it up it would just rocket down again within a few moments. It took well over an hour to get him stable enough to be taken to ICU for close monitoring. My head was in a fog whilst walking to ICU, behind the medical team, fussing over Max on the bed. All I can remember thinking was "Oh no, not again". My heart was in my stomach. Once there, the ICU staff were able to administer suitable medication to help bring up his numbers.

I knew Max was pretty unwell, and that septic showers were serious; however I really didn’t appreciate how seriously sick Max was. A few days later, when we were back on the ward, upon innocently asking when we may be able to go home, Dr KT quite bluntly, in her typically stern manner, remarked “Not for a while. Don’t you realize your son nearly died?” 

ICU

Max spent two nights in ICU before being moved to the ward. We were told Max would need to remain an inpatient for at least two weeks more…. 

"How can I plan my escape....?"

However, 2 days shy of two weeks, on April 2nd ….with the help of daily visits for IV antibiotics from the nurse@home team… we were given the permission to go home! Just in time for Easter!

The Easter Maxi Rabbit

Sounding like a broken record...

(January 2012 - March 2012)

To recap...Thursday January 5th 2012, after a day at hospital for Max’s weekly photopherisis treatment, the 'trio de Finch' spent their first night together in their newly renovated home. 

T’was lovely!

The very next day (Jan 6th), Max was off his food, had a temperature of 39.4C and was just feeling bleh…so as a standard precaution, off to the ER we went. Frustratingly, whenever Max would spike a fever, it would happen the day following a photopherisis session. Coincidence? I think not.

The standard gamut of tests and routines were performed: full blood counts, urine samples, blood cultures, x-rays, swabs, dressing change, saline drip erected, three lots of IV antibiotics drawn…and Top Gear on Daddy’s iPhone…

iPhone...check!

Many of the ER staff recognised us, and we often heard “Back again… Oh, you must love us?!” That joke was starting to wear thin. On the up side, as they knew us so well, and were confident in our parental capabilities to recognize signs in Max that would require us to return to ER; we were allowed home after the initial dose of IV antibiotics. However, as these anti’s require administration 12 hours apart, we needed to return to the hospital at 8am, then 8pm each day. We were fine with that. Much happier to travel to and from the hospital than to be stuck there full-time.

The next day we made two trips to the hospital for antibiotics. At 11:30 pm, just as we were about to turn in for the evening, the phone rang. A Dr from the ER called to tell us that we MUST come into the hospital immediately, as the blood cultures had grown a bug from one of Max’s lines. Tim calmly, but firmly stated that Max’s Dr’s are comfortable for us to stay at home as he was well within himself and we were coming into the hospital at 8am the next morning for more anti’s anyway. Tim suggested she call Max’s treating Dr. She was snooty! We understand that it is her role to urge patients to come in under such circumstances – however she did not know us, our situation…and our capabilities. At midnight, she phoned back after contacting the Dr and conceded that Max could stay at home.  

After a few days the blood cultures came back identifying the specific bug that Max had picked up. Thankfully, this bug was sensitive to an antibiotic that could be administered, as two week course, at home by the nurse@home team.  Phew, hospital admission avoided!

Max set up at home with his 2x antibiotics running

Come Feb 18th the same events were to unfold…temperature, ER visit, antibiotics, etc. On this occasion however, the antibiotics were ceased after the standard 48 hours as nothing grew from the blood cultures.

Along with the frequent line infections, there were other issues that arose from photopherisis and having a permacath line:

Temperamental machinery: On a number of occasions the machine simply decided not to work. As it was a highly specialized machine, relevant technicians needed to travel to the hospital from afar and parts were often needed to be sent from overseas….hence it was often a few days until repairs were completed. I was never pleasant to be around on those days; after having to be at the hospital by 8am, having to hold Max down for painful venous blood tests for blood matching to prime the photopherisis machine….only to be told “Ah, sorry…the machine is on the blink today!”

Weekly breakfast at hospital before photopherisis.

Sensitive machinery: Ironically, as Max’s platelet count was now very HIGH (500-700K, pre-transplant he was usually at 10-15K), unless his line was kept open with saline at ALL times whilst the machine was ‘thinking’, his blood would clot, the machine would clog up, and it would consequently stop working. This would inevitably mean that the photopherisis session would have to cease without having completed it's 'job'. 

These issues, along with the fact that Max's skin was not ‘really’ improving dramatically, were the beginning of a good case – by Max’s Dr’s - to stop photopherisis treatment. Tim and I (and the photopherisis team from Peter MacCallum Institute) were however keen to keep going a while longer. We really wanted to give it a ‘red hot’ go.

This debate was to be revisited in the not too distant future…..

One huge milestone was achieved in February of this year. Max was allowed to begin Kindergarten!! I was anxious beyond words....Max was excited beyond words! As expected, due to his red/flakey/pigmented skin and lack of hair, the kids did stare and avoid him for a little while. But, acceptance did not take long. For the majority of first term, I stayed at Kinder, for my own peace of mind. Nearing the end of term however, I ventured out to wait in my car. I needed to ease into this new phase. Max was handling it much better than me. 

First Day at Kinder

Due to his long periods of isolation, and inability to play with other children, we knew that going to Kinder was essential for Max to reestablish his innate love of socializing. Max has always been such a 'people person', so Tim and I were confident it would not take him long to get back into the swing of things. As Max is still extremely delicate and has balance issues due to his muscle weakness; he is uber cautious and anxious about being bowled over when around large groups of kids. This has happened on numerous occasions, so he is justified in these fears. He has much more confidence in smaller groups of two or three. Exhaustion and fatigue was another issue that had become apparent. By the end of the 3 hour Kinder session, it would be no surprise to find him asleep.

Sleeping during story time!

Meanwhile, other issues were at hand. Max had always had a ‘tight skin’ problem in the downstairs area. The more time that passed the more of an issue that this became as there was now pain involved and (sorry for TMI) 'ballooning out' when he was doing a wee. Infection risks were always a concern, so it was decided that the simple procedure of a circumcision was required. Of all the days for this to be done, it was arranged for the 15th of March…Max’s two year anniversary since his bone marrow transplant. 

It was a big day. Fasting was required from 7am, he had photopherisis without food, Oi!...then straight to surgery…Max coped surprisingly well. It helped that he slept through most of his photopherisis. He was in great spirits prior to his surgery and extremely inquisitive as to what the other kids in the surgery waiting area may be having done. One conversation comes to mind: 

Max: (looking at a girl getting on the bed next to him) What is she having done?

Me: She is probably having an operation - just like you.

Max: Ooooh, is her pee pee sore too?

                

The surgery went very well. The healing process took a few weeks…but it’s working fantastic now!

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!"

What happened next...

Hello friends of Max. It has been a very long time since we last corresponded. Last time we wrote, Max had been going through some pretty tough times. He continued to have a very up and down time of it for the next few months, but before we bring you up to speed with all that and more, you'll be heartened to know that Max is the best he has been in nearly a year. In just the past month, in no particular order, he's celebrated his fifth birthday, gone to a couple of his friends birthday parties, rediscovered his love of blocks (and has been constructing some pretty amazing cityscapes everyday), developed a love of video games, attended his first game of AFL and has put on close to 5 kilos (with the help of a fresh course of steroids)! With all the playing, eating and celebrating, he's had a very busy month. Over the next few weeks we aim to update you on what’s been going on with Max over the past 9 months, starting with…

Off the canvas (September 2011 – November 2011)

A quick recap: Max was admitted to hospital on August 30 2011 with low blood pressure and a suspected infection. He was given fluid boluses with the aim of bringing up his blood pressure. These boluses leaked from his veins into his tissues creating havoc with his skin and lungs. When Max began having difficulty breathing, and the oxygen mask did not help, he was admitted to ICU. Here, Max was initially placed on a BiPAP machine, but as his breathing function / lungs had deteriorated further over the next few days, it was evident that he needed more help. Max was therefore intubated for a number of days. Once his lungs had become clearer and no longer required the ventilation, Max was let out of ICU to spend another two and half weeks on the sixth floor in hospital. He lost a lot of condition as a result of being 'out of it' for two weeks in ICU, so he had a long way to come back from before the doctors would let him go home. Not that we really had a house to go home to, but more on that later. 

Max in ICU, BiPAP and Intubation

To this day, we are still in the dark as to what caused Max to become so ill in August. Some Drs speculated that it was possibly some bacteria or virus, but it was 'knocked out' quicker than it could be picked up in any blood cultures. Another theory was that his ill health in particular his lung deterioration was GVHD which had suddenly affected his lungs. Tim and I (and Max's main treating Dr) doubted this was the reason, as our belief is that lung GVHD has a more gradual onset. Nevertheless, it was this theory held by this Dr that instigated the desire to begin a new treatment for Max. Cue photophoresis. A permacath central line was surgically implanted and treatment began the next day. 

First session of Photophoresis while still intubated in ICU

Being in hospital did make it easier for Max to have his photophoresis treatment. As the machine lived at the hospital, it was a small positive that we could just wheel Max down to either ICU or Day Medical for him to have the treatment instead of having to drive in to hospital twice a week.  A treatment of Photophoresis itself is pretty uneventful. Apart from the occasional blood pressure, heart rate and temperature checks, once the nurse connected Max up to the machine, he just had to sit back for the next two to three hours and watch Top Gear while the machine went to work on his blood. Max took to the treatment pretty well and he didn’t seem to suffer from any of the potential side effects such as nausea. However the main risk with Photopheresis, as we unfortunately got to understand all too well over the next eight months, was that it required Max to have a permacath implanted in his chest to facilitate the flow of blood from him to the machine and back to him again.....and the number one risk when having any type of central line is....infection.

Photophoresis in ICU

Sleeping during treatment

Having fun during photophoresis

We left hospital in the last week of September, after a stay of about 4 weeks. We were all ecstatic to be leaving, considering that not three weeks before, Max was very, very ill. Our home was in the process of being renovated and in no fit state to be accommodating Max, but luckily for us; Bee’s parents were on an overseas holiday so we were able to stay at their house. Despite Max and I (Bee) having to make the early morning - day long - trips to hospital two times a week, every week for photophoresis, we loved the fact that we were once again able to cook our own meals, to lie on a couch and watch TV and to use the bathroom whenever we felt like it, without having alarms ringing and nurses/Drs interrupting us. We were living what felt like the lap of luxury! However, not long after, an infection showed up in Max’s blood. At first, Max was treated with a daily dose of IV antibiotics, administered by the nurses in the home. However, after a week or so, as the 'bug' was still persisting in Max's blood, they changed the antibiotic to one that had to be given twice daily over a two week course. Result: Max had to be readmitted to hospital. Ironically, during Max’s prior admission in which he was very sick, the doctors never were able to identify the culprit as to what had made him so ill. During this admission however, despite being admitted due to a known 'bug', Max was very happy and well within himself. Although this stay was much easier on Max, I think he still would have preferred not to be there.

Back in Hospital...but happy!

After the two week course of antiobiotics had finished we were all free to go home ... again. Unfortunately, a week later Max spiked a temperature during photophoresis and he was once again (!!!) admitted to hospital. On top of the recurrent infection issues; the placement of the permacath line in the vein within Max’s chest was causing the line to often become blocked. When lines become blocked, the machine cannot function and more often that not, this would mean that the current treatment session had to cease. Very, very frustrating! With all these complications in mind the doctors decided to remove the line, and a discussion was to be had as to whether treatment was to be continued. Tim and I were still very keen for photophoresis to continue, as we believed (on the contrary to some Drs) that it had made a small improvement to Max’s skin and overall condition since it had begun. We wanted to give it every chance of succeeding. After pleading our case to the Drs, it was agreed that treatment would recommence in around two weeks after a new permacath was inserted.

Permacath line #1 : Bad placement

After another week’s stay on the sixth floor, they removed the permacath line and Max was free once again to leave hospital. Max had two weeks of 'line free' time out of hospital in which he thoroughly enjoyed not having the inconvenience of a piece of plastic permanently sticking out of his chest. 

Going home.....again!

No Lines!

His demeanour and appetite improved immensely over that time. It was very heartening for us to see many signs of a return of the old Max.

The eating man

Max with his treasures

Max and Mum

Max and Dad

Next installment: Permacath 2 – a new beginning
Coming soon...