Bad luck

Dear friends,

In my last post I asked the question how much more bad luck Bram could have. He found out the hard way unfortunately over the last couple of days….

Since our last post Bram made really good progress, so much so that Bram finally got moved from High Dependancy Unit to a normal peadiatric neuro ward. Obviously a big step after almost 10 weeks of intensive/high care. When they were preparing to transfer Bram to his new ward we got the news that Bram had tested positive for CRE(Carbapenem-resistant enterobacteriaceae). A potentially very dangerous bug. As a result Bram had to be moved into an isolated room on his new ward. This bug is resistant to various antibiotics and very unwanted in hospitals. Every staff member working or visiting Bram now needs to wear gloves and aprons and everythings has to be discarded afterwards. Bram gets treated with antibiotics which do work for this bug and this has proved succesfull. No more infection markers in his blood. But once you contract this bug Bram will always be an occupier and thus test positive for this. For the remainder of Bram’s stay in hospital he will have to be in an isolated room.

Bram’s breathing is still not normal. It is irregular, especially at night. Big pauses at times, apneas, and desaturations. Last week Bram had a sleep study. He was monitored overnight, and when the result came back it was decided that Bram has to get a little bit of oxygen while he is asleep. Hopefully time will be able to heal this. A second sleep study was done later in the week with Bram being on oxygen and this was much better. So for now Bram sleeps with oxygen for the foreseeable future.

As we said Bram made real progress even with all that happening. We went home on tuesday evening feeling positive.
This all changed yesterday. When we came in Bram was different. He was extremely sleepy, would hardly open his eyes and did not really react to us. As the day went on Bram detoriated further, and in the afternoon began to get possible seizures/fits, an extremely high pulse rate, high temperature. All of Bram’s specialist were called in and they managed to stabilize him. They than organized for him to undergo a CT scan. This CT scan showed that his VP Shunt (a device which routes excess brain fluids away from the brain in his tummy) had become detached from its catether wire and was not working anymore. Bram’s neurosurgeons had never seen a failure like this before. But Bram is special, so he is the first one. Pressure had built up in his head again and he was rushed off to theatre for emergency surgery. Already his 7th round of surgery, they took out his VP shunt and catether, cleaned out the area of his brain, and installed a temporary external drain.

This operation went well, and Bram is doing a little bit better. He is very grumpy at the moment, most likely has a big headache but will pull through again. When Bram is good enough again he will need to have a new VP shunt installed in the next week or so. This obviously delays his chemo therapy even further and makes him a lot weaker that what he was just a few days ago.

Time and time again Bram has shown us how strong he is. This boy is a born fighter. He is the bravest person I know and I do feel sorry (not really) for his cancer, but it will stand no chance in his fight with him! The last week has been extremely tough on us and we hope that Bram’s luck will finally change. He deserves a bit of luck!
Love
Jeroen, Laura, Max and our “braveheart” Bram!

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