I decided to upload this in Worldmappin community because I was given special permission to post non-travel related just this time.
Today, November 16, 2024, is her 10th day in ICU. We are still waiting for her neurologist to update on the result of her EEG and also waiting for her MRI schedule. While the waiting game is unbearable, we focused our energies on attending to her needs. She's afraid to be left alone in her room, so we take turns in making sure that there's someone in the room with her. Although there are assigned nurses, they usually stay outside and do their rounds.
After her seizures yesterday, she's already afraid to be left alone. She's also always thirsty as her daily water intake has been strictly monitored and limited to just 1000 mL/day. This is remove the excess water in her body. As someone who loves to drink water, it's an unbearable experience for her to be constantly thirsty. She always ask for ice just to dab at her lips.
We are also instructed by her infectious disease specialist to limit the visitors and not allow anyone with cough or colds to be near her. After the seizure, it might be that the excess water might pool into her lungs again, so she's at risk of having pneumonia. She's also on the third day of not having any antibiotics. Together with her steriods 3-day pulse therapy, her immune system is very low as of this time and she's very susceptible to infection.
So far, she can comfortably sleep without any oxygen and her blood pressure is maintained at 140/80. Her ketoanalogues and essential amino acids has been increased to three capsules a day to help her kidneys. She really wanted to be okay because she took all of her 16 medicines even with very low water available for her. She complained that her food was very bland. Her sodium level has been increasing, so she was administered with a low sodium IV fluid.
I don't want to preempt everything because everything single time that someone asked about her condition, when we say she's getting better because she already looked okay, something bad will manifest like her heart congestion last Saturday and her seizures yesterday. In all those times, there's already an order from her doctor for her to be transferred to a normal ward. Her nephrologist talked to me yesterday and even asked if how we are doing financially. I told her we are almost at our limit. She was also concerned as we are already staying too long in ICU.
More than anything, I just want her to be okay and I don't want that there come a time when she needed something and I can't do anything because I have nothing. I decided to sell that parcel of land I bought years ago, but it's not like any goods with a sure buyer. We still have to find someone who's willing to buy at a fair price.
For years I questioned why I felt so demotivated and I already felt contented with what we had. I was also confident with the insurance she had, but the coverage is not enough especially for critical illnesses. There are heavy decisions to be made after this. It's so difficult to get sick in a country that healthcare is almost non-existent.
If we brought her to a public hospital last November 5, she might have died already. I admit that Chong Hua Hospital is so expensive for an ordinary Filipino family, but it's the best available here in Cebu. I have to embrace the cost as I want her to get the best treatment. Her current hospital bill as of this morning is PHP 528,000.00. It's almost PHP 60,000.00 increase from yesterday, maybe because of her MRI. I still have to get her latest patient ledger to determine the sudden jump in cost considering we paid around PHP 33,000.00 yesterday for her medicines and EEG.
I guess that's all for this update. I'll update as soon as I can especially that her condition is very volatile. Once again, I tremendously appreciate all the upvotes and reblogs. You don't have to send your hard-earned HIVE and HBD. If you upvote, just think of it as a normal curation thing, but you already helped me a lot.
Disclaimer: I don't plan to capitalize her disease to milk rewards. I also don't plan to post updates about her forever. But please know that from now on moving forwards, any upvote you'll cast on my posts (and I mean any post), you're helping with her medicines especially that lupus is incurable and she'll have a lifetime maintenance to manage her disease. I also plan to allocate a large portion of my salary to make sure her needs are met and she'll live as comfortable as possible.
Addendum: I drafted this post earlier this afternoon while she was asleep and as I preparing to upload this post (9:45 PM), she's at the MRI machine. The scan would take 45 minutes, so I tried to upload this as fast as I can and then I'll go back to the radiology department. Hopefully, the scan will show no lasting damage in her brain from her seizures yesterday or from the heart attack last November 5.