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.
Awww Kim, I hope you'll have a buyer soon, at least that will also help with the finances.
Your sister is pretty and charming. Hopefully we'll see her in a healthier state soon.
Piyongan nlng sa jud ang Chong Hua, wala may lain jud diha..
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It's a hard time for your sister, for you and for your family. I pray from Allah that MRI will go smoothly. Wishing a healthy life for your sister ❣️.
We are with you 🫂.
Sending love and prayers from Pakistan.
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For the past 10 days, he has been undergoing treatment for his physical condition and is waiting for all his expensive treatments. Although it is very difficult, all of you are taking care of him as a partner. This is a great achievement for us. Because for a patient, the importance of family, relatives and very close people is immense for his proper treatment. I wish you all a nice day. I wish him good health through all the tests including MRI.
Friend, it is difficult when they ask us for water and we cannot give them since they cannot then draw those liquids of their own free will unless we have to give them more medication so that they can do so; It is complicated but FAITH friend that she will get out of it like this how my sister is achieving it it is not easy but if we give her our courage she will achieve it
Aww, she is so beautiful in that picture!! But she doesn´t have to be embarrassed at all! On the other hand, it's a good sign that things like that care for her still, after all she went through 😉
... I admire how you stay on her side day and night! You are a great brother to her and also a great family member! I am sure they are endlessly grateful to you for taking all that responsibility and decisions. I know it's tough but stay strong, money comes and goes - relationships and health are much more important, you made the right choice bringing her to the best doctors she can have right now. Everything else can be solved after! Stay strong my friend, we are with you <3 thanks for the update.
It is a very difficult time but when we love there are no limits, we do everything we can and God will help you 🙏🏻
!PIZZA
You can only do what you can, mate. Don't start beating yourself up, just continue doing the best for your sister. No one can ask more than your best.
My best wishes to you, your sister and all your family through such difficult times.
Hey, this is @rashed.ifte again and thanks for the update as I was looking forward to it.
Aww, I was also looking forward to one of her good photos, so thanks for it.
Tell her she has all the good wishes from us. And both of you should be strong at this time.
The Disclaimer is understandable and don't worry about that, we understand your situation very well. Take care of her and of yourself. Sometimes peoples looking after the patient gets sick and you know you're not allowed to get sick at this situation so of course, take care of yourself and have your meals regularly.
I hope the MRI gave you a good result. Looking forward to the next update.
Heya, brother. Just remember, difficult battles are for the strongest soldiers.
It's a hard time and it shall pass soon, wishing you all the best from my side.
I agree with you Kim! Our healthcare was not good, Philhealth is not that something we can rely on.
Insurance coverage is not that much also, especially if provided by the company.
If I were you, I would also chose private hospital. That happened when my son got sick.
With 2days and 3nights , it really cost much.
You're sister was so lucky to have you!
Stay strong! 💪
Stay strong for your sister!
so sorry the healthcare costs are very expensive. same as in my country
Well, so sorry I can't help you much. I can only pray for her recovery.
For you, also take care of your health while taking care of your sister.
Take care.
Praying for the fast recovery of your sister sr Kim ..
Wishing her a speedy recovery!
Be strong
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Hi! Actually, I still do. Her daily medicines are what's eating my funds right now.