It's been 10 days and the lump still stays the same. I suppose that is a good thing it didn't grow any bigger or escalate into something else. I've been taking pictures daily to show Meimei and she is still worried about it. We'll gonna let it be for another week to see if it goes away on its own.
Meimei purposefully 3D printed a red and white basket for Nabby to celebrate National Day together .....
I vaguely recall Meimei telling me that she got a 3D printer from Courts while I was in hospital. I guess it's another new toy to relieve the stress she has been enduring with my illness. I'm glad at least there is something that keeps her mind off of my condition. It seems fun but am concerned if the plastic is really harmless ... oh well time will tell. I suppose with the technology being several years old it should be more stable and safer now?
There is an explosion of greenery in the fish tank. It's getting crowded ... like a woodland bush.
Papa and Mama came over unannounced to see me when they found out I'm came home yesterday. Everyone was out for church and table tennis so it's just me at home. While we were chatting at the dining table, Papa suddenly ask me why I have a lump on my left hand.
Huh? What? Wow I didn't notice it till he mentioned it. It definitely wasn't there yesterday ... I've been poked so much on my hands I would know if there was such a big lump. I don't have any discomfort or pain but they insist I remove the ring on my finger incase it's a case of blood clot.
The last few days have been calm. The headache has subsided though there is still soreness on the back. The doctors seem to be rushing us to go back again though they are careful not to come across as being pushy. I don't have intentions to stay longer. It's been very tough for Meimei to come here everyday and it pains me to see her so tired.
Well not much to say other than I hope I never need to stay at the hospital again, Not that the stay was bad, it was actually a pleasant one, but I hope I don't fall sick like that again.
I've spend most of the month lying in a hospital bed. There really isn't nothing more to mark the month other than this silly illness.
Waiting for something that you are unfamiliar with is such a nerve-wrecking experience. The op was scheduled at late morning but I didn't know exactly what time it will be. And I had to fast and could only take sips of water while I wait. The nurse eventually came to wheel me to the operating theatre.
First they brought me to a general waiting area. I was there for probably 20-30 minutes. I couldn't really tell the time as they had me take off everything on me. I had to change into a disposable underwear under the hospital garb. Then they wheeled me to a staging area right outside the operating theatre.
There was a patient before me and once they wheel the other patient out, a doctor came out to explain the procedure and what they need me to do. I've heard it before when the pain lady doc explained it to me in the ward but it doesn't hurt to hear it again. I would be awake during the whole procedure so I can provide feedback. They would draw 40-50ml of blood from me and inject it into my spine. There would be feeling of fullness, aching and pain but we need to inject at least 25ml to have better chances of filling up the tear. So basically he was telling me to bear with it as much as possible.
While we wait for my turn to go in, another 2 doctors came out and they were chatting on how rare my condition is. But one doctor says that he sees this hundreds of times a year in Toronto. So they were discussing that my condition is more recognised in western countries and may be more cases here in Asia but most just write it off as severe migraines. Well it's good to know that this is getting more recognition in Singapore ... I can't imagine being blown off and told to go home and suck it up.
There were moments of apprehension when they pushed me into the theatre but it's too late to stop now. This is the first time I've been a patient in an operating theatre so it was kinda novel to see all the machines, tool tables and light stands. Everyone was in hospital garb with gloves and masks. They had me roll over onto a pillow they have placed on the operating table with my back facing up. They then proceeded to strap all manner of wires and tubes to my body. They gave me some good stuff through the needle on my left hand and then located a major vein on my right wrist and drew 5 vials of 10ml blood.
I was awake but had my face planted against the table so I could only listen and feel all the things going on. First they attempt to find an entry point for the needle. They press a device against my back and you can hear a buzz each time they shoot the CT rays to see the area. They landed on an area between the T8 & T9 spinal cord. Then I can feel a needle go in and they begin injecting the blood. I started feeling discomfort and pain in the buttocks. I bore it as much as I could and we ended at the 4th vial. I was glad the doctors were calling it a success and I was brought out to the waiting area again to rest. It was a while before they brought me back to the room.
The change was obvious once I was back in the room. I now have a light headache while I was lying down on top of the soreness and pain in the tailbone and buttocks. The doctors explained to me before the op that the added blood in my spine would cause higher pressure since my body would not have adjusted the production of spinal fluid to the new mass. So the only I can do is pop the painkillers and rest. I have to stay in a flat position for at least 24 hours to allow the blood to spread across the spine and hopefully seal up the tear wherever that may be.
I was scheduled for the spine MRI yesterday late morning. So the nurses came to poke my hand right before 6am and drew blood to test for kidney function before they proceed with pump a dye for the MRI scan. It was standard procedure but I still didn't like being with a drip again. Both hands are now full of holes!
I had to keep still for 45 minutes during the scan. The MRI tech tried to make me as comfortable as possible but I still felt a strain on the back 15-20 minutes in. I endured the discomfort and strain as best as I could and was so relieved when it's done.
The pain doctors came together with the neurologist team this morning to review the MRI results - they are now taking the lead from the neuro team since it is now focused on the spine. The MRI confirmed there is fluid leakage in the spine and it's visible. Docs mentioned it's very rare they actually see it - most cases similar to my symptoms will recover in about 2 weeks with rest. But in my case I've been here for 2 weeks with no signs of marked improvement. They are unable to tell where exactly is the tear so we have 2 options, we can try to do a blind blood patch at the area where they see the leaked fluid or go for more complex and invasive scans.
Pain doc mentioned they happen to have a slot late morning tomorrow to perform the blood patch so they are reserving the slot first. They have to consult the radiologist team to determine if it is useful to even do further scans. Further scans would involve injecting contrast (dye) into blood, hope that when blood produce cerebral fluid, the contrast will follow and be able to see the flow of cerebral fluid. They would strap me to a rotating table and hit me with CT rays while rotating me around to see the dye flow.
I have till tomorrow morning to decide if I don't want to do the blood patch. They would draw blood from me and inject it into my spinal cord area like a epidural painkiller procedure for pregnant women. There would be pain and fullness in my back as they inject the blood. I need to be awake to alert the team when I feel the discomfort or pain as they can determine when they should stop the injection.
Sounds scary but I cannot continue staying at the hospital. I've been pretty compliant and resting 99% of the time but I'm not getting any better. Barring any new information, I'm doing the blood patch tomorrow.
The bill went up by a good $10K from the initial one from last week. Most of those is down to the daily ward rate and the MRI. The letter of guarantee from Meimei's company insurer is only up to $10K so the billing clerk warns that we may have to put down a deposit if the bill keeps going up. I expect it will definitely go up by another $10K when we complete the MRI and possibly any operation.
I drop Alam a note and asked for his opinion on whether to start claiming using my AIA Goldshield plans or stick to using the company insurance instead. Whatever the case, its important we settle the financial concerns early so we can focus on getting me fixed.
Meimei shared some upgrades on the fish tank. There looks to be like a pump fountain sort of thing and a wooden log.
It's been a whole week of resting and waiting for the spine MRI. The doctors are concerned I've not improved on my condition. They shared that patients usually recover on their own after a week or two.
That said, the nausea has gone since I've been lying down and I've been diligently drinking lots of water and coffee. So they took me off the drip early this week but that's all the progress we made.
I've got into the groove of using the laptop. Meimei brought this laptop stand from home that has been a lifesaver. I no longer need to hold up the laptop with one hand while trying to type on the other hand.
It's the weekend so nothing much goes on. So time to share some pictures of the hospital food served. It's pretty good considering that this is a hospital and I expect that the kitchen would have some restrictions on condiments they can use.
Anything with chicken is typically ok. I especially like the Halal breakfast selection where you can get mee siam or lontong on some days. Thankfully Meimei comes everyday and orders Grab for lunch and dinner. We usually buy Stuff'ed daily bowls too for dinner.
It was a good thing we stayed at the hospital. Nurse came in to inform us in last evening that a slot opened up for MRI and we had to go immediately. Sweet, the very reason we stayed at the hospital instead of going home.
So we got the MRI done yesterday and the doctors were able to share the initial findings this morning. They see substantial deterioration on the lower neck but cannot find the source of the leak. The next step is to schedule for a spine MRI but that would be a longer wait since head MRI scans tend to take priority.
Again they tried to promote the CGH@Home scheme but we were not going anywhere. What if a slot opens up again like yesterday and we can get ahead?
Anyways I'm in a better mood for the weekend, having found a way to hold my lappy while I lie down. But everything else is still the same. I feel totally fine whenI'm lying down but the headache and nausea comes once I'm upright.
I'm originally booked on a flight to Cincinnati this evening but no way I would have made the trip in my condition. Let's hope we get this resolved soon.
Meimei managed to catch the doctor today when they came to do their morning rounds and asked about my condition. Currently the top suspect is still brain fluid leakage which happens when there is tear along the spinal fluid walls. They advised that with enough fluids and bed rest, it typically will heal on its own. However based on today's condition, it doesn't seem to be improving as much as they had hoped after 3 days of rest.
So the next step is to schedule for a MRI brain scan. However the earliest slot is next week. And then they offered a scheme called 'CGH @Home' where in-patients get to go rest at home while waiting for tests. It sounds good but there were couple of concerns.
The main one is that if we are at home, I suspect we would not be given priority should a MRI slot open up. I think I would stand a higher chance if I am already present here in the wards and can easily go down at a moment's notice.
Next, it doesn't really work when I'm on a drip. I can't easily wheel the drip stand around since there is a drop down area in the master toilet. I can get help from the nurse to stop the drip when I want to go shower. How am I going to do any of this at home ....
Then there is the unknown cost savings or should I say ... lack of. We were told we will save on the daily ward fees but there will be ambulance transport charges, equipment rental fees, doctor/nurse travel fees for the daily home visit. So it sounded like it's square. And if that's the case I might as well stay here.
Lastly, they have a shortage of beds so I suspect they are trying to get anyone not in dire straits to go home. Sneaky way of generating more revenue too since they are still going to charge me while they free up a bed for another patient. Plus when I come back for the MRI, I would not have a place I can lie down to wait and am likely to end up in a wheelchair and battling nausea.
So all in all I'm not keen to do the CGH @Home scheme. Pretty nonsense ... especially when I have adequate insurance coverage.
