MRI scan

Mathias first hospital stay for his MRI scan. This will be the first of our so called hotel stays. We stayed so long and for a few times that we jokingly termed it as a hotel stay, since I had to bring all his stuff, all my stuff, stay there for many nights, eat and sleep there. I remember those days with bittersweet nostalgia. I hated staying at the hospital as I couldn't sleep well. I was always getting up to check on him, the noise from the next bed, the interruptions from the nurses. It was basically draining. But I did it as we had to for the good of him.

Oh another hated thing was the non stop drop ins from training doctors. Everyone of them repeated the same set of questions and procedure till I felt like screaming at them. I get that they are trying to learn on the job but it would be preferable if they all came together at one time, or please take a look at the patient's file before asking whatever that could be found there. Some were polite while some were plain rude and obnoxious. They would proceed to ask many many questions about Mathias, why is he in the hospital, what is Menkes disease? What were the symptoms? Basically the entire history of Mathias. Then they would proceed to strip him down and look all over him. Mathias gets very annoyed with all this touching and stripping. He hates taking off his clothes and all this feely touchy that goes on all day long. Some even do it when he is sleeping. Until I scolded one of them. It is not easy for Mathias to fall asleep and for them to  be disturbing my sleeping child was really too much. Plus that particular group was super rude and stuck up.

I am happy to share with them about my child and the rare disease Menkes but please, we need our privacy as well and some time alone with our child. Anyways, its the usual when staying at the hospital. Sigh.

The little sweetie in hospital garb. :)

When he checked in, he had to start fasting till the next morning. Poor boy. He had never missed a meal before this. I had one super cranky kid. The time spent waiting for him while he was in the MRI was the longest I ever had to wait. Yeah, I know, it was just an hour or two but it felt like a lifetime to me. Not knowing what was going on inside and if he was alright sure killed me. Waiting for the results made me jittery cause at that point, we still did not know he had Menkes. This was where we met the visiting UK doctor. The scan showed that his brain formation(for lack of a better word) was at the 3 to 4 month stage. By right he should be about 8 months plus. Plus the scans showed that he had a minor stroke on one side of his brain awhile back. But they are not sure what was affected by it though. They couldn't tell me what was wrong with Mathias at that point.

Luckily for us, we had the UK visiting doctor. Because of her, they tested his blood for copper content. And that's how we confirmed that he was probably suffering from Menkes. They took his hair samples to get it checked. And eventually, we sent his blood and mine to U.S to get it confirmed. They couldn't do it in Singapore.

At that point, we were told of the prognosis that most Menkes babies do not live past 3 years of age. It was like a bombshell that went off in my life. Having to hear that there is no cure, and that there is nothing to be done, that your child will DIE, was horrific!

But life goes on doesn't it, whether you like it or not. We accepted the bad news and we made the best we could out of it. I will never forget that day. Up till today, its one of the worst words I ever heard in my life.