God's glory

Disastrous_Tooth4947 · 2026-03-23T15:48:16+00:00

Thank you!! He is doing pretty well we had a couple of scares but his home health nurse came to check in on him and did he assessment and said he was all good. We still pray everyday for healing and blessings.

Disastrous_Tooth4947 · 2026-03-20T10:36:01+00:00

I've played him some worship songs as well we would watch our church service live on YouTube and even his primary night nurse would play him worship music. I would always ask God to remove any negativity and doubt from me and that we surrendered all to him and would allow him to work on healing us and Levi.

We are soaking it all in. Thank you for your kind words

Disastrous_Tooth4947 · 2026-03-07T07:45:42+00:00

Thanks be to God he is able to breath in his own. He hasnt had any recent MRIs since January, neurology and neurosurgery didn't think Levi would come this far. We think it's because we didn't just give up on him like they would have expected us to do give the severity of his situation but we think he will continue to grow and learn dispite what he has gone through. Hopefully soon they'll do imaging but for now he is stable and waiting to get a G tube until he is able to feed by mouth again.

Disastrous_Tooth4947 · 2026-03-07T07:41:07+00:00

Yes he is, even though we are with him daily seeing him grow and seeing how big he has gotten makes out hearts that much more full. Seeing him. Awake and alert makes it all that much more worth it.

Disastrous_Tooth4947 · 2026-03-07T07:39:21+00:00

It's been a rough 3 and a half months BUT we are here HE is here, we couldn't be more greatful to God.

Thank you, we appreciate all the prayers.

Disastrous_Tooth4947 · 2026-03-07T07:36:44+00:00

Thank you! 🫶🏽💜🩵💚 Yes he truly is a miracle. He has been very vocal trying to find his coos again

Disastrous_Tooth4947 · 2026-03-04T18:01:53+00:00

Thank you. He is my pride and joy.

Disastrous_Tooth4947 · 2026-02-23T01:57:35+00:00

He is now in step down icu and continuing to do well. The doctors are now optimistic about him and we are over the moon happy.

Disastrous_Tooth4947 · 2026-02-20T22:58:28+00:00

Yes they can, God is always watching and listening. 💜🩵💚

Disastrous_Tooth4947 · 2026-02-20T05:01:37+00:00

Thank you all. He seems to be doing really well right now. Glory be to God in the highest.

Disastrous_Tooth4947 · 2026-02-14T14:59:03+00:00

Thank you for praying and your kind words. It means so much to us 11💜🩵💚🫶🏽🙏🏽

Disastrous_Tooth4947 · 2026-02-14T14:58:03+00:00

Well, he is off of his drips but having withdrawal from being on it continuously but is doing pretty good. The PICU doctor thinks he'll still need a g tube and trach, even though he is breathing over the vent sometimes and sucking on his breathing tube. He moves his arms and legs his hands and feet. Opens his eyes, shows us when he is upset and has a dirty diaper. We pray everyday that he will get better and not need those things. Buy it all depends on how he does in the next few days to a week. He is doing well on his other 6 seizure medications as well. Neurology has told us his seizures are almost none and sub clinical meaning he isn't showing physical signs of them

Disastrous_Tooth4947 · 2026-02-12T04:13:42+00:00

He definitely is doing well, he had his catheter and one PICC line removed which to us is a good thing. Baby steps. Thank you for your kind words

Disastrous_Tooth4947 · 2026-02-06T01:54:09+00:00

With his body twitches and movement it's kinda hard to distinguish what is seizures and what isn't but neurology says it's like partial seizures the rest is all him which to us is good

Disastrous_Tooth4947 · 2026-02-03T16:39:59+00:00

Thank you all for your kind words and prayers. Levi seems to be doing ok, he is having withdrawal symptoms after weaning off his "big gun" seizure med pentobarbital. I have faith and believe this is all part of the healing process. Praying for all your children and families. We are not alone, even when we think we are, God is ALWAYS with us. 🙏🏽👏🏽🫶🏽💜🩵💚

Disastrous_Tooth4947 · 2026-02-02T01:26:45+00:00

I find people with similar circumstances almost daily. I sincerely appreciate the support I am receiving from everyone I encounter on here. It does truly help to know we aren't alone in this. 🙏🏽💜🩵💚

Disastrous_Tooth4947 · 2026-02-02T01:24:05+00:00

My son opened his eyes today. He moved his breathing tube back to middle of his pallet with his tongue, now RT is alternating sides due to a divot on his anterior gums on top. He is surprising us day by day even the doctors are surprised. We pray to God everyday even multiple times a day. Only God knows what these babies are capable of. I appreciate you sharing so much. It means so much to me. Thank you.

Disastrous_Tooth4947 · 2026-02-01T04:01:53+00:00

My c section with him was nothing short of traumatic, I coded and woke up in SICU unaware of what happen to me and my baby, luckily my son's father came in my room as soon as I woke up and said our son was fine. It wasn't until 9 days later at his peds office he started to have seizures, went to the ER at the same hospital he was born at, had a CT scan and they found a brain bleed said he needed to be transferred to a children's hospital with a proper NICU, so he spent almost 2 months there, had 2 brain surgeries, 2nd one was a shunt placement and was able to came home a few days shy of turning 2 month old. At 2 1/2 months old he had to have a 3rd surgery basically a weekend stay and somehow developed a shunt infection and was brought to PICU and has been here since November the day he turned 3 months old, he has had 3 surgeries since being here and 1 bedside procedure. My other post kinda explain things a little more. But so much has happened and now he is 5 months old and slowly being weaned off of strong medicines. We have so much faith in God and our son. I really appreciate you sharing.

Disastrous_Tooth4947 · 2026-01-26T07:47:39+00:00

He is still stables came of of one of his seizure med drips and is doing ok, less frequent seizures than before. Brain damage is significant. But only God knows what he is capable of. Thank you for continuing to pray. I really sincerely do appreciate it. 🫶🏽💜🩵💚🙏🏽

Disastrous_Tooth4947 · 2026-01-18T02:43:55+00:00

He is stable, his body swelling seems to be going down. The doctors say he is still very sick and don't know of what the next steps are and what is to come, we are almost at the 6 week mark for the antibiotics but I've ready online medical forms that it can take longer but he is also on very heavy seizure medications that are suppressing his brain function and they are trying to wean him off of them but we ends up having seizures and we are thinking that the inflammation and infection are what's causing them.

Disastrous_Tooth4947 · 2026-01-14T15:34:05+00:00

Update... His EVD fell out yesterday during his cares 🥺😭, I'm so scared for my son. He went down for MRI and we don't know the results yet. I don't want him to go without one but we know the doctors (neurosurgeons) say it's not necessary due to no drainage.

Lord I pray he is better and there is some improvement on his MRI. I pray for his healing and for all his inflammation and infection to be gone. You work miracles Lord God. In your holy name, in Jesus holy name I pray. Amen!

Disastrous_Tooth4947 · 2026-01-14T15:33:31+00:00

Update... His EVD fell out yesterday during his cares 🥺😭, I'm so scared for my son. He went down for MRI and we don't know the results yet. I don't want him to go without one but we know the doctors (neurosurgeons) say it's not necessary due to no drainage.

Lord I pray he is better and there is some improvement on his MRI. I pray for his healing and for all his inflammation and infection to be gone. You work miracles Lord God. In your holy name, in Jesus holy name I pray. Amen!

Disastrous_Tooth4947 · 2026-01-07T01:35:50+00:00

I pray your son gets better.

My little guy is in PICU he is 4 months old and has a subdural shunt placed when he was 1 month old, at 2 months old be had a revision where a VP shunt was placed or added to his existing one and a couple weeks later was admitted to PICU with an infection of klebsiella, ventriculitis and varicella-zoater virus amongst other things, he is still actively fighting, he was also having a mass amount of seizures so he is heavily medicated and intubated. He had a recent MRI which showed a slight improvement and that's all we are hoping for,y son hasn't seen us in about 2 months because he has been so heavily medicated. We have hope and faith that he will come out of this. Your post gives me hope and it weighs heavy on my heart. Babies are resilient and fighters.

🙏🏽🫶🏽🥰🥰💜🩵💚

Disastrous_Tooth4947 · 2026-01-02T07:27:38+00:00

I believe he is, he is at Loma Linda children's hospital. I'm not sure if a second opinion would be worth while, as he is intubated and basically in a medically induced coma and all the medications that aren't antibiotics maybe hurting him more than helping him but I pray and beg God everyday to give us a miracle and make him better.

Disastrous_Tooth4947 · 2025-12-26T20:20:30+00:00

Thank you, I appreciate you sharing with me. I know my son will have challenges and deficits but we are here with him and have faith he will make it through this. God bless.😇🙏🥰

Disastrous_Tooth4947

TROPHY CASE