Category: Prayer board for others

4pm update – Ellis was nearing the end of his full-scale 6-hour EEG when I came to visit this afternoon. The doctor I spoke to said that Ellis hasn’t had any clinical seizures since yesterday (meaning they aren’t physically visible).

Unfortunately it being Sunday, we have to wait until the neurologist comes in tomorrow morning to see the results of that scan to see if there have been seizures occurring or not, and then proceed from there (for a CT scan and lumbar puncture).

Ellis is looking ok, he is stable, and the nurses are taking very good care of him.

Pray for:

-Another seizure-free 24 hours.

-Tomorrow (Monday) will be a stressful and important day. We will meet with the neurologist and get the latest EEG report to see if we can proceed with the lumbar puncture.

-Pray for the answers we need for Ellis to be treated accordingly.

We’ve been seeing the same moms and dads come and visit their own children here for the past few days. There are 10 beds in the PICU, and most of them are full today. There’s now a 9 year old girl across from Ellis. The parents of the 2-month-old baby next to Ellis are from Myanmar. The picture I am attaching is of myself and Watie, the mom of the 1 year- old, Aliana, who I mentioned here before. She had surgery for a heart condition two weeks ago when her heart stopped, and the doctors are concerned about brain damage. Watie is from Kedah (a neighbouring state) and is staying at the hospital dormitory to be with Aliana. I’ve been surprised how far my rudimentary Bahasa has gotten me but Google translate has helped a lot too. I told her a few days ago that I would pray for her daughter and that I pray to Jesus who is a healer. She said she would pray for Ellis also. I stopped by Aliana’s bed this afternoon and asked Watie if I could pray for her then too, which we both did together. No mom or dad ever expects or wants to sit in those waiting room chairs. But God comforts us so that we can comfort others. We all really have nothing else we can do anyway except wait and pray. I am so grateful in a new and unexpected way now how we don’t have to be stingy with prayer. I’m not going to hoard all your prayers for Ellis because I know that God can heal him and his cousin Seth, Aliana, and all of the kids in the PICU – with just a word. So today we can pray for all of the above and all of the children (and their parents) there, knowing that God knows and loves them all extravagantly.

-Erin

Nothing to report on Seth, he had a good day and night. We’ll post an update on him later. In the meantime, an update on our 11 year old cousin Ellis. We appreciate your prayers for him as well.

From Erin:

5:50pm update – We met with the attending neurologist, Dr Sindhu today. Ellis has been on a continuous EEG nonstop that no seizures had been detected on during the night. Once a day they do a more thorough EEG which they did on Ellis at lunch time. In the last ten minutes of the 2 hour scan they detected a seizure. It was what they call an electrographic seizure and not a clinical one, which means it couldn’t be seen in him physically but was detected in his brain. So our 48 hour wait time for a lumbar puncture unfortunately restarts and Ellis has to remain as is, with a few adjustments to his medication, over the weekend. Some of his antiseizure meds are also sedatives so he will remain sedated. The good news, though, is that his seizures have lessened in frequency and severity. A lumbar puncture test will be able to tell if his brain is suffering from infection or inflammation. Inflammation can be treated with steroids but they cannot give that if there is infection. Which we cannot know without a lumbar puncture. So in the meantime we just wait and pray.

Pray for:
-continued rest for Ellis’s brain
-No more seizures
-Patience.

Our pediatrician warned us in the very beginning to expect ups and downs, that this would be a marathon and not a sprint. Reuben and I have both run marathons and we can both tell you this is more like a long-term endurance race (that you never signed up for). If you look at an EEG reading, there are lots of little ups and downs. The neurologists are most concerned with the bigger spikes – the greater peaks and the valleys. Those irregularities are the seizure activity. Pray for those peaks and valleys to be straightened out and levelled.

“The path of the righteous is level; you, the Upright One, make the way of the righteous smooth.” -Isaiah‬ ‭26‬:‭7

Benjamin and Ellis in the go kart when they came to visit -HC

We don’t have an update on Seth yet. The night was spent controlling his BP and resting this morning. They said yesterday that they will do MRI today but they haven’t shared what time.

In the meantime, here is an update on our cousin Ellis. Thank you for keeping him in your prayers. -HC

6:15pm update – After seeing the EEG results from this morning after his seizure, Dr Hwang and Dr Teh advised us to move Ellis to the pediatric ICU (PICU) at General Hospital (GH). Ellis needs a continuous EEG which Island Hospital could not provide, plus both of these doctors are going on leave in the next couple of days. We agreed with their decision and Ellis was transferred by ambulance around 3:30pm – It was surreal to be riding in the front seat of an ambulance with the sirens on (unsurprisingly if you know Malaysia, cars were still not stopping). The drive between hospitals only took 2 minutes.

GH definitely has a very different vibe and has its pros and cons. The pros are all favorable for Ellis – here they have dedicated pediatric intensivists, several pediatric neurologists on hand, and the specialized equipment that he needed. The cons are that the PICU is an open ward and has strict visiting hours, and we can only see him from 12:30 – 1:45pm and 4:30pm-7:30pm.

We met with Dr Teh and the pediatric Intensivist, Dr Amani, when we arrived. Their plan is for Ellis to be fully sedated to rest his brain for the next 48 hours, continuously monitoring him on the EEG. They are going to be more aggressive in seizure control and put him on 4 different seizure meds. They are waiting from some prior test results from Island Hospital to come in to decide whether to begin immunotherapy. The question to be answered is why his seizures are still happening although his infection is gone.

Pray for:

• true rest for Ellis’s brain
• ⁠Seizures to stop
• ⁠his brain to heal and the injured neurons to stop firing. His EEG indicates too much activity specifically in the left lobe of his brain.

This was not the news we expected to have today. It’s been a difficult afternoon. The verses on my mind have been Psalm 139- “Where can I go from your Spirit? Where can I flee from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there. If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast.” — Today was far too much for us to do in our own strength and I know God’s presence was with us and felt that He truly followed us here.

-Erin

photo of Seth and Ellis

From Erin: Reuben and I met with Dr Hwang, Ellis’s pediatrician this morning. His EEG indicates encephalitis. He responded favourably to his first small dose of Immunoglobulin (IVIG) so they will increase the dose and give it to him over the next four days. She said when she came into his room this morning he opened his eyes and looked at her (much better than yesterday, which means the seizing stopped, he is on antiseizure meds right now and for the near future). She wasn’t happy with him being that awake though and told the nurses to increase his sedation by a bit to help his brain rest. The MRI results from yesterday are good and indicate no swelling in the brain – a very good thing to hear. The nurses in the ICU told us we couldn’t be in the room with him but Dr Hwang said that that was nonsense and we can stay with him, but not for prolonged periods of time. Dr Teh, the pediatric neurologist, will be in around lunch time (which means 1-2pm here) to meet with us. He works at GH (the govt hospital) but comes here daily to see patients. So overall a relieving report for us as of this morning. Thank you everyone who has been praying and please continue.

Pray for:

– the IGIV therapy to work

– it helps fight the virus

– ⁠the antibiotics he is on to work

– ⁠the inflammation in his body to decrease

We will have an update on Seth later, but right now we need lots of prayers for our nephew, Ellis (age 11), in Malaysia.

From my sister, Erin: Ellis has been admitted to our hospital due to fevers since Monday evening. At first treatment with antibiotics he seem to be getting better but his fevers have been coming back due to some infection in his body. Tests have ruled out Covid, dengue and other common viral infections. Erin has been with him last night and reported that he has not been quite responsive and may have had a seizure and had received medication and been observed by medical staff. We’re not sure what he has. So we’re asking you to uphold him in your prayers. We trust in the Lord and the comfort in Him that He alone can heal and restore Ellis.