Return to hospital (day +547)

Max der starke blog September 13th 2011

Hello loyal readers. The trio der starke have unfortunately returned to hospital. Max has been laid low by a mysterious infection and is currently being treated in ICU. Over the last couple of months we have made three trips to the emergency department for various reasons. For the first two, we were sent home the same day. On the third trip, Max was admitted and he's been here ever since. It has been a bit of a hairy ride with plenty of ups and downs, but after a not so fun weekend we hope he is now on the way up.

On Wednesday morning (31st August) Max awoke with a temp of 40.8C. We took him to emergency where his blood pressure was measured as being extremely low. The combination of these symptoms suggested Max was suffering from an infection of some nature. Given Max's severe immune suppression therapy, any infection is treated with extreme caution and he was admitted after a lengthy stay in emergency.

To correct the blood pressure,  over the course of three days, he was given boluses of IV fluids. However this fluid, not unexpectedly due to the infection, leaked from his veins into his tissues causing him to be very bloated in the arms, hands, chest, legs, feet and face (Our little Michillin man). The blood pressure was up again and the temperatures down but now Max had a new problem to contend with...

Over the next five days Max was shuffled between three different rooms. The first two nights were spent on the eighth floor as there was no room available on Max's home ground of the the sixth floor. Friday night was spent in his old room T2 in the fish bowl, but there was little time for nostalgia as we were moved again on the Saturday morning to another room on the sixth floor, S9.
  
On top of the temperatures, Max also had a few episodes of vomiting and a serious case of diarrhea to deal with (oh the memories!!!!). Due to his struggling to keep anything in for too long, it was feared that his meds were not being properly absorbed into his body. Therefore on Friday (2nd Sept) Max had surgery to insert a central line into his neck so as to administer all these drugs - along with all the 'usual' meds he takes - intravenously. In fact on this visit so far, he has had a canular put in his left arm (lasted two days), his right arm (a week), his left foot (lasted about 6 hours before falling out), his right foot (still going after 4 days) and an arterial line also in his right foot (took 3 doctors and 5 attempts to get it in). He also has nasal gastric tube inserted for nutrition as he hasnt eaten a thing since we've been here.

During these days we were visited by many doctors and specialists from all over the hospital, including oncology,  ENT, infectious diseases and rather ominously, ICU. All were stumped by the fact that despite presenting with classical symptoms of an infection, nothing seemed to show up in all the tests. However, the concern for the infection was beginning to be overridden by the concern for Max's respiratory function. 

Due to the fluid build up on his chest and lungs, it was becoming increasingly difficult for Max to breath. As a result on Monday (5th Sept) he was transferred to ICU where he could be kept a closer eye on. He was first put on  a 'BiPap' machine to assist with his breathing. Max was a trooper with the big mask that he had to wear full time - we can only imagine that it was extremely uncomfortable. He really didn't complain much - his only strong demand was for "a drink - I'm reaaaaly thirsty". Unfortunately, do to his fluid overloading, he was put on a restricted fluid intake and was only allowed 50mls every 2 hours.

Unfortunately the breathing didn't improve and at 6 am Saturday morning, the ICU doctors decided to intubate Max and put him on a mechanical breathing machine. Since then, his breathing function has improved and the xrays of his lungs have started to clear up a little. Hopefully he will be off the machine by the end of the week - and as the big tube will no longer be wedged down his throat, he will once again be able to speak. We miss hearing his voice.

The great mystery remains as to what struck Max down in the first place and how it made him so sick. Of the barrage of tests that have been taken, none has yet to return a positive result for either a bacterial, viral or fungal infection. As time passes, the chances of them finding anything diminish and yet given the broad spectrum of 'anti' drugs he is on, it is not as important that they do actually identify the particular infection. Whatever it was that triggered the fever is likely long gone. 

As to why his lungs deteriorated to the point that they did, the theory being floated is that whatever infection he did have, the effects were compounded by his graft versus host disease. In what will hopefully turn out to be a great piece of luck, a photophoresis machine suitable for use with smaller patients arrived in Melbourne just last week and the oncology doctors are keen to try it out on one of their patients. Max, as it turns out, just happened to be in the right place at the right time. We have talked about photophoresis as a potential treatment before but it wasn't pursued as the previous machine that was available locally was basically too big for Max. "What is photopheresis" I hear you ask? Simply, it's the process of connecting a patient to a machine which extracts their blood, filters out certain white blood cells and exposes them to UV light, then pumps it all back into the patient over the course of a few hours. By some mystery of science, over the course of multiple sessions, this treatment of giving your blood a suntan has helped resolve a lot of problems experienced by sufferers of graft versus host disease, including problems with the skin and lungs. It doesn't work in all cases, but we can only hope it will for Max.

The photophoresis option has unfolded very quickly and they are hoping to start Max on the treatment this week! Another extremely fortunate happening is that they are actually physically bringing the machine to Max. How special is that! We guess that the urgency relates to the fact that if his lung condition is related to gvhd they will want to act before any permanent damage is done. He first needs to have a new line (Mr Hose mark 2) put in which will happen as soon as tomorrow. The line is much more robust than the Hickman line (aka the original Mr Hose), as it has to cope with a greater flow of blood (it's plugged into an artery, not a vein).  It will be a twice weekly therapy for the first few weeks, then reduced to weekly, monthly etc. We will keep you informed as to how it progresses.

Needless to say that throughout his recent trials and tribulations, Max has lived up to his name as the strong one. We are repeatedly amazed at, despite what gets thrown at him, he continues to overcome  each obstacle with great courage and determination. He is our hero.

We just want to also thank everyone for all your messages of support. A special thanks must go out to our extended WAS families across the globe for your continued support, prayers and love.