Friday, January 17, 2014

2012 was a good year....

We are very glad to report that Max has had a most excellent past eighteen months. Health-wise, he is now the best and most stable he has been since he had his transplant back in March 2010. Since having his Permacath and subsequent PICC line removed in June 2012, he has had only a couple of precautionary stays in hospital, both thankfully brief. It has been quite an amazing turnaround for our little 'strong one'! Not only has he made many leaps in terms of his health, he has also made a stellar introduction to school, having commenced Prep in January of this year. He continues to regularly astound us with the things that he is learning and the confidence and enthusiasm at which he is handling school life.


Our last update brought Max's story up to his fifth birthday. For his birthday, at the suggestion of a friend, we got Max a 'Kinect' for our Xbox video game console. If you are not already aware, the Kinect is basically a motion sensing device that sits in front of the television and allows you to control games with your body movements. So, instead of sitting on your backside with a video controller in your hand, you must stand up and physically act out the required actions. For example, when playing bowling, to get your avatar to do the corresponding movements, you must physically perform the action of bowling a ball. Previously Max had not shown too much interest in video games, but he loved playing games via the Kinect. In particular, he liked thrashing his dad at Boxing! It was very satisfying for us to see him so enthusiastically take to it, particularly when he had spent so much of the previous year stuck in a hospital bed.


Skin wise, Max still had wound issues. As a result of the persistent wounds that just would not heal on his right palm and wrist, Max was not using the fingers and thumb on this hand. Max was keeping his hand consistently in a fist in order to protect these wounds from harm. Wise? - perhaps. However, his skin on the underside of his fingers had tightened to the point where could no longer straighten his fingers. According to the doctors, there was a very high risk that if not resolved, this disfigurement could become permanent.


Hence in July 2012, Max was fitted with a splint to be worn at night to firstly correct the angle of his thumb (back out to a 90 degree angle), and then later tackle the issue of straightening his fingers. 





This splinting however did not last long, as the wounds on Max's hand were being aggravated by the splint. The decision was made to only reintroduce the splinting process once the wounds had fully healed. As it turns out, this was to take more than a year!!

In August 2012, during an appointment with Dr KT, the question was asked of Max whether, due to his permanent hair loss, he wanted a wig. The GVHD had left Max with a bald noggin but this seemed to be one of the least of his worries. From time to time Max will forlornly ask us why he has no hair on his head, but when we explain why, he tends to get over it very quickly. He also happens to have a beautifully shaped head, so it was easy decision for both us and Max to say 'no' to the wig - for the time being.


September brought on a case a deja vu with a trip to emergency as a result of Max experiencing a fever and headaches. As it turned out, Max tested positive for, not one, but two cases of the flu (para-influenza and influenza B)! Max was admitted to hospital but was fortunately sent home a few days later.



As a precaution, he was put on a five day course of tamiflu (cue nausea, vomiting and diarrhoea!) and another course of antibiotics to try and knock out any infection that may have got in through the wounds on his hands. Probably the biggest difference with this trip was that there was no central line into his body to complicate matters. Oh, how much simpler things were without having to worry about that dreaded line! Around this time, Max made one of his regular (2 monthly) appointments to the ENT doctors to have his ears cleaned of excessive wax. It's worth mentioning, as Max seems to have quite an unusual fondness for having this procedure performed.


It was also around this time that the hospital were able to schedule regular Physiotherapy and OT appointments in the home. It was a lot of fun for Max but also very practical as the the therapists made an effort to integrate his 'belongings' into the sessions. This made it so much easier for us to continue on with the recommended exercises at home.


In October we were on high alert as Max had a number of vomiting episodes triggered by an ability to clear phlegm from his throat. We never knew whether something more sinister was at play or whether it was just the unfamiliar remnants of the flu stuck in his throat that were sending him into a panic. Either way, the episode only lasted a month or so. Blood tests did show that his eosinophil count (a GVHD marker) was up, so as a consequence, his steroids, after nearly being dropped all together, were once again raised (from 0.2 ml to 1ml).

In November, it was Bee's turn to be laid low with illness, after coming down with a severe case of the flu (possible pneumonia) which left her bedridden for ten days! Fortunately, we had a lot of help at hand and as Bee 'lived' upstairs for the duration of her illness, Max thankfully avoided the bug. On the upside, during this time we managed to get good use of our renovation - which has not been utilised for 'living' as yet....

December, as it does, brought on the festive season. Although compared to the year before, we were all in a much more festive mood. In early December we attended the 'Challenge' Christmas Party, at which Max had an amazing time. Do those people at Challenge do a brilliant job or what!? Imagine a carnival with all the rides and food choices that you would expect of a carnival, but with a quarter of the crowds and without a cent to pay? Oh, and they also have fast cars there so Max and Tim got to take a ride in a Lotus. What a day!



Max had his last day of kinder on the 19th. It was another reminder of how far Max had come in the past 6 months. At the start of the year, Max struggled to stay awake until the end of class but now he was able to make it through with ease. His progress made us all the more confident that he would be able to make it at school.



Christmas Day arrived and Santa Clause was kind enough to drop a trampoline in our backyard for Max (the word from Santa was that those things are never as easy to put together as they make out in the video, particularly when you are doing it in the dark and have had a couple)! Santa had obviously had a word to a physiotherapist as trampolining is an excellent way of exercising for Max (given it's size - and weight restrictions, Santa must of also snuck a peak at Tim standing on the scales, as it was safe for both Max and Tim to bounce together). Max was a little cautious at first, but over the year he has grown much more confident in his bouncing abilities.



2012, following on from a fraught last third of 2011, was a very challenging year for Max. What gave us great hope was the way he bounced back from being in a very precarious position. Max der Starke indeed! We were all optimistic that 2013 would be a great one for Max and it would be fair to say that all our hopes have come to be realised.

Although we had always known, given his age, that 2013 would be the year that he would start school, it wasn't even until September 2012, given what had passed over the previous 2 and a half years, that we even began to contemplate actually sending him off to one (Bee had always anticipated that she would have to home school him). Thanks to some help (was it from upstairs?) we were fortunate enough to get Max into an amazing local Catholic Primary school. Ever since our first contact with the school, they have shown great compassion and empathy towards Max and not surprisingly, the whole school community has embraced him.


Actually, I'm probably running ahead of the story a bit here. We shall pick this up again next time. Stay tuned for the next episode of 'Max der Starke' where we find out all about:

* Max's school days
* Max the billiard / pool shark
* Max the artist
* Max's adventures with Hi-5
* Max's magical 6th birthday party
* Max is getting a sibling!

Tuesday, March 5, 2013

The end of the line...(April - June 2012)

After the near catastrophe in March with the septic shower episode (see previous blog), the following two and a half months were a precarious time for Max. The pattern of being home for a few days before spiking another temperature and being trundled off to hospital for more I.V. antibiotics showed no signs of breaking. Also, Max’s skin, particularly around his right hand and thumb had broken down quite badly and was showing no sign of recovering.  The aim of the photophoresis treatment was to help him in fighting off the Graft Versus Host Disease (GvHD) of his skin, and yet there were no clear indications that photophoresis was working as hoped, and the intravenous line that was facilitating the treatment was also the number one suspect as the entry point for the barrage of infections he was regularly succumbing to. Something had to give.

Max made it home for Easter. Fortunately he was able to be administered the remaining doses in his course of I.V. Bactrim in the comfort of his own house, thanks to the RCH @ Home service.  Often, the only thing keeping Max in hospital, after the initial fever had subsided, was the need to have the remaining course of antibiotics delivered via an I.V. pump. In particular, if he needed to have the antibiotic more than once a day, it was not feasible to make multiple trips to the hospital, hence the reason for staying. Thanks to the RCH @ Home service, he could have his medicines lying down on his brand new couch, in front of his big screen T.V.

Max was back in hospital on April 12th with another fever and back out on the 16th after a short weekend stay. 

Not a happy camper...


Outpatient visits are much more fun than inpatient admissions!...Knowing the right people also helps!!!
Thank you to Max's Music Therapist Beth.
Max returned again to the hospital on April 27th, this time for a more extended stay of two weeks, after registering a temperature of 39.9 C. This was a particularly frustrating time for us all as, much like the previous September, the doctors were unable to specifically identify the cause of the fever: was it related to the poor condition of the skin on his thumb, was the central line the culprit or was it just down to his GVHD? Max was pretty dispirited by this stage, and, because of the fevers and the general state of his skin, he wasn’t really interested in doing much of anything. This was a hard time all round.

Was it his thumb that was making him sick? His thumb had been rather manky for sometime. Max would be overly protective of his thumb, and tend to keep it enclosed in his fist. This might of kept his thumb out of the way but it also meant that he was not using his right hand at all, and now the entire palm of his hand was beginning to deteriorate. During our previous hospital visit, I (Bee) had mentioned the fact that there was a sore on his thumb that just wasn’t healing. I was just told to ‘keep an eye on it’, but no treatment was suggested or offered. By this time, his thumb had turned black. This was now a major cause for concern. Many departments from across the hospital were now involved in trying to help fix this issue: Infectious Diseases were involved to get the fevers and antibiotics under control, Plastic Surgeons were on board to determine whether surgery was needed to 1) open up his thumb to clean out any junk, should any be in there – and 2) to determine if infection had spread to the bone, potentially causing bone death, and Hand Therapy to manage the appropriate dressings and cleaning of his hand.

3rd May
11th May
Multiple cleaning procedures each day were a real battle. 

To attempt to ascertain if an infection was present in Max’s thumb bone, he was required to have a MRI scan, which for kids of Max’s age is usually done under sedation. We explained that Max had had one before without sedation and that he would be fine. Sedation would have required fasting and to be honest we didn’t want him to have more drugs in his system than was necessary. As protocol, Max needed to have a ‘practice run’ in a Mock MRI room. As expected, he blitzed it! 

Mock MRI
So time now came for the real thing. All systems were go until the staff pulled out a box, absent during the mock trial, that Max was instructed to put his hand inside in order to keep it still during the test. There was NO WAY Max was going to put his extremely sensitive hand, which he had protected with his life for so long, into a tiny solid box that would be pressed firmly onto his hand to keep it still. I (Bee) was totally gutted. Why did they not mention this during the mock procedure???? As a consequence, Max could not have the MRI that day, and when he eventually did, he was required to be sedated. We were put on a waiting list for the procedure. First time, we had to wait the WHOLE day, with Max having to fast from 5am to 5pm – only to be told it could not be done that day…..very angry! Second time lucky, and the results of the MRI showed no indication of bone involvement…relief!

Max’s high temperatures were somewhat of an enigma. Without fail, they would peak at 38-39C each night, but then come morning, they would return to a more respectable 36-37C. This was not typical of the fevers Max had previously experienced where he was consistently febrile until the antibiotics had had a chance to kick in. Finally, after having thrown all sorts of antibiotics at him, the Doctors were convinced that despite the recurrent temperature spikes, Max would be much better off at home. This was a massive relief to us all as we could see that, during this stay, the longer we were in hospital the more despondent Max was becoming. As a precautionary measure, he was prescribed an I.V antibiotic (from memory, we think it was Timentin) that could be administered at home, via a ‘Baxter Pump’.

A Baxter Pump looks like a babies bottle with a full balloon inside (it was actually described to us as like a condom – whatever takes your fancy I guess?!). The antibiotic is stored in the balloon/condom and is slowly discharged over the course of a day via an I.V line to which the Baxter Pump is connected; in Max’s case, his central perma-cath line. The device was configured to release the antibiotic over 24 hours and each day a nurse would come out to our house to change the bottle over.  Max would have this Baxter pump for 5 - 6 weeks.

Max at home with his Baxter pump.
So with a Baxter pump attached to Max, we headed home. Not even 24hrs later, the RCH @ Home  nurse who came to change 'Baxter' got a temperature reading from Max of 39.7°C. Upon calling the hospital for their advice, it was strongly suggested that we take Max to the ER. We were devastated. We got to the ER and explained to the Doctor that during our two-week stint in hospital, Max got fevers each evening which settled by early morning. We were so grateful that we saw a Doctor and nurse in ER that knew Max, understood our situation, and… allowed us to go home again! I'm sure this decision was made easier, given that his temperature, whilst still febrile, was lower than what was recorded at home and that he was enjoying a 24 / 7 infusion of antibiotics - thanks Baxter! This ended up being a Finch record ER visit; in and out in less than two hours!

Although, ‘Baxter’ had facilitated getting us out of hospital, whilst on it, Max was nauseous throughout the days, gagging often and vomiting at least twice daily.  This was quite concerning as Max was not eating as a result, and losing a lot of weight. He was not a ‘happy chappy’.

Vomit bag hand at all times.

Along with his hand sores…the skin on Max’s feet had also begun breaking down, resulting in some rather nasty wounds. They were so tender that he was unable to walk, or wear socks - for fear of the socks sticking to his wounds - and shoes for that matter. As a consequence it was necessary for us to drag out Max's pram so that he could be chauffeured around during his hospital visits. As these wounds were regarded as a potential entry point for infections, it was required that we attend the dressings clinic for appropriate foot dressings and supply of an abundance of fancy pads, bandages and tapes for his feet. The preferred pad of choice was one that was impregnated with Silver - as this metal is known for it's healing properties! Max was our little King with very expensive feet!

King Max being chauffeured around the hospital 
The effort required to get off the pads and bandages each day...
It was a massive production each time we had to remove the pads/bandages. When at home - prior to his evening bath - we had the procedure 'down pat' by pre-soaking his feet in a shallow bucket to loosen the dressings. On one occassion at hospital however, when Dr KT wanted to see Max's feet, our only choice was to soak his feet in cardboard bedpans!!! Needless to say - after this mammoth hour long task of a screaming Max with bleeding feet - Dr KT took my word for it as to how his feet were tracking!

Meeting 'Giggles"
On May 24th, Max went to hospital for his weekly photophoresis treatment. However, during preparation, a clot was discovered in the line and so treatment had to be called off for the day. The clot was able to be removed but in the process of re-locking the line with his special vancamycin lock, part of the line cracked! What was immediately thought to be a disaster actually turned out to be a blessing of sorts as it was the cracking of the line that triggered the decision to cease photopheresis. With the line cracked, it was no longer safe to be used for photophoresis and nor could it be repaired. If we wanted to continue photophoresis, Max would have to, for the third time, have a new line surgically implanted.  So weighing this up against the fact that his skin was not obviously improving and the seemingly never-ending round of infections he was enduring, it was an easy decision to make. 

We had dearly hoped since the previous September that photophoresis would be the silver bullet that would enable him to get off all of his medicines and cure him of his GVHD. We were however also well informed of the relatively experimental nature of the treatment; of all the associated risks and that there were no guarantees, only vague probabilities of success.

During the course of the treatment, we had genuine hope that he was improving and would often convince ourselves that he was looking better, but in hindsight, it’s hard to know what effect it really did have. The only objective criterion that we knew to look for was the condition of his skin. That did fluctuate during the course of the treatment. Some days it looked fantastic; pale and intact with little mottling. Other days it was fiery and flakey. He certainly turned the corner quickly around the time of starting photophoresis, from being on a respirator in ICU to out of hospital in two and a half weeks, but was that due to photopheresis or was he already heading in that direction? Although we were very grateful for the opportunity to try the therapy, despite the Doctor's and Max's best efforts, it didn't work out as we had imagined it might. In many ways, it was a relief for us all when the decision was made to finish it. No more risk of septic showers, no more weird and wonderful bacterial infections, no more blocked lines to be wrangled with and no more temperamental photophoresis machine.

Max’s adventures in photopherisis came to an end on May 30th with the removal of his line. Having arrived at the hospital at 8 am – as a fasting and nauseous little man - Max had to wait until 5:30 pm before he went in to surgery. However, being the seasoned campaigner that he was, he wasn’t anxious at all.  He actually was demanding the ‘chocolate gas’ so that he could be put to sleep to get it all ‘over and done’ with ... because he was hungry!

As he still required the I.V. antibiotics, due to his thumb/hand wounds, he had a more temporary PICC line put into his arm. The antibiotic course finished on June 5th, and pretty much straight away Max’s nausea and vomiting ceased. On June 25th, the PICC line was removed. Max was line-free once again….this was certainly cause for celebration! 

PICC line
PICC line
As photophoresis had finished, some of the drugs that he had been able to drop from his regimen had to be reinstated, including steroids. At around this time he also began taking a new drug called Imatinib (Gleevec), to pick up where the photopherisis had left off in treating Max’s GVHD.  Gleevec (or Glivec) has been used for a number of years in the treatment of certain cancers, but recently it has also shown some promise amongst a number of patients in lessening the impact of skin GVHD. In this sense, it is still a relatively experimental treatment and there are known side effects and risks. That said, Max didn’t need an artificial appendage plugged directly into his blood supply network to support it, so with what he had been though over the past 9 months, this was a great relief.  

By the end of June, Max was certainly experiencing the effects of the reintroduction of steroids. Steroids are used primarily to suppress Max’s ‘ new’ immune system so that it does not attack his skin – which it still sees as being foreign. Other major side effects of steroids include the ‘moon face’ and an increase in appetite. So, as a result of restarting the steroids came the return of ‘Max the eating machine’, and we once again had the pleasure of listening to Max’s beautiful voice 24hrs as day….”I’M HUNGRY!!!!!.....”

In the pantry....Max's favourite place to be whilst on prednisolone/steroid treatment!
…luckily he had no issues with eating the majority of his 5th Birthday cake!
Birthday Boy!
CAKEEEEEEE!





Next instalment:
Hand splints, influenza and School boy Max!

Tuesday, October 16, 2012

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

Saturday, October 13, 2012

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!





Saturday, October 6, 2012

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!"

Tuesday, July 31, 2012

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...