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!





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