#cohenstrong

Mommy’s Friday Afternoon update

Through the day we have really not had many changes. He has been resting mostly all day. We are seeing a little more improvement in his heart rate and respiration’s and they have also removed his draining tube from his head. The tummy is extending a little more and not making much progress. He is still staying pretty lethargic but the doctor had a talk with Genetics to see if maybe there was something we were missing and they said that Cohen with all his medical issues is just taking things a lot slower than normal. We still have a long road ahead of us but God is in the mist of it all. And we definitely can tell..Doctors/Nurses that aren’t even assigned to Cohen have been coming in to check on him because everyone has been so worried about our little angel. He’s not giving up and he’s giving everything he has to show that to us! 💙
#cohenstrong

Cohen’s Mommy’s Friday Morning Update

We had overall a good night. Everyone is very please with the improvement we have seen in the past several hours.. anything is better than our past couple days. He has been such a fighter. His temp was good this morning considering he has ran a temp for the past 3 days we are very pleased with that. Just hoping and praying it stays down. Throughout the night we have had a lot more swelling in the eyes so he can barely open them causing even more anxiety. We are having a little trouble with the left lung but he’s starting to cough so hopefully that will help. His heart rate has been down in the 130s-150s and that has been incredible seeing as we couldn’t get out of 180s-200s for a awhile. His respiration’s has also been better in the 30-60 range so we are making improvement.. we are slowly coming down on oxygen. His belly is still very extended but we are being able to vent and hoping to make progress soon. He is still very weak and not wanting to do much but we are getting responses so we are happy with that! I feel overall this is a huge praise report and that all of his prayer warriors are doing a phenomenal job! My family and I couldn’t thank you enough.
#cohenstrong

PLEASE KEEP THEM COMING!!!

Cohen’s Mommy’s afternoon update.

Sorry I haven’t had the chance to update a lot today!! We are just currently working on trying to get his belly better which is taking a lot of time.. it’s not doing any better but we are actually starting to be able to drain so we are hoping to make some progress on that ..that will take some pressure off the tummy. He’s staying very lethargic due the amount of work his heart is doing and not coming to as much as we would like but we are thankful and praising God for what we get!! He is a lot better than he was yesterday!! They are just watching him very closely. We don’t have many answers and he’s still staying febrile and they are trying to figure out why but we haven’t got any answers on that as of now.. they can’t seem to put their finger on what’s going on. They are going to talk with Genetics today and see if they all might be missing something. Please continue to pray because believe it or not THEY ARE WORKING! 💙
#cohenstrong

Update from Cohen’s Mommy

These past 18 hours has been some of the worst 18 hours of my life. We went for a turn for the worse all throughout the day yesterday..around 11pm he wasn’t being responsive at all nothing we did brought him back to us.. He was pretty much lifeless for hours. All I could do was cry out for Jesus.. They thought possible seizures so we had a CT scan and a EEK.. both came back great!!! (THANK GOD!!) but we are still trying to figure out what is going on. He is finally back to himself again and being responsive to us. His stomach has progressed overnight and has everyone concerned.. We are waiting on a surgery consult now on his stomach to see if we can figure out what is going on. His heart rate is still through the roof in the 190s and his respiration’s are still in the 60-90s. I know everyone of his prayer warriors has been praying for him and doing such a wonderful job keeping him going. I don’t think we would be at the state we are in if it wasn’t for his prayers warriors so please don’t stop praying for our little man!! 🙏🏼
#cohenstrong

COHEN NEEDS HIS PRAYER WARRIORS MORE THAN EVER BEFORE!!! PLEASE PRAY!!!!! GOD KNOWS!!!!

COHEN’S PRAYER WARRIORS REALLY SHOWED UP LAST  NIGHT. WE CANNOT THANK YOU ALL ENOUGH.

They finally listened to Cohen’s Mommy last night. Her determination and steadfast faith opened his medical teams eyes and they made our baby a plan for his pain. Please continue to keep him in your prayers.

Post op day #1 – Cohen had a pretty good night. They kept him pretty comfortable. At about 2-3 he woke up in a panic and was trying to get out of the bed and pull all of his IVs and wires out. Which is not good because yesterday he pulled his PIC line out and that was their go to for everything..So these are pretty important at the moment. They are trying to take him off his Precedex drip and start letting him become a little more alert. So everyone please pray that he will stay calm and we can get him more awake so he can start getting his lungs cleared out. When he gets upset his O2 has been dropping and he’s having to work harder to breath.
#cohenstrong

Update #1 from Cohen’s Mommy

Cohen is still doing okay he has took a turn around since his morning and is not doing the best right now..throughout the day he is staying very tachycardic heart rate up in the 200s, he has started running a fever and is breathing very hard and heavy. We have started another blood transfusion because his hemoglobin has dropped too low. We have all his friends here watching over him. Please continue to pray! 💙
#cohenstrong

Update #2 from Cohen’s  Mommy

So Cohen has had a lot of issues these past couple hours with an extended belly. He hasn’t peed since his cath was taken out this morning around 10.. we knew something was wrong..they took an X-ray and he was diagnosed with illius which is a condition in which the colon and the digestive system is paralyzed and has shut down which is what is making his belly extend out and is very painful making it hard for him to breath..it’s compressing on the lungs so he’s breathing at about 75-95 breaths per minute.
Please pray for our little angel! 💙
#cohenstrong

 

Cohen’s surgeons updated us all day…they said the pressure was a lot worse than they anticipated. There was so much pressure on his forehead that it had put pressure on it and the eyes and eye sockets. Cohen’s surgeons had to reconstruct their placement. They said the skull is supposed to be smooth but his has ripples because of the pressure. They hope that will smooth out over time. The fluid was pushed to the back of the head where the sutures still had some openings. They said the brain was so compressed that when they relieved the pressure the brain immediately expanded. They thought his brain was smaller than normal…But it was actually constricted. They opened the skull to give his current brain room as well as give it plenty of room to grow. This morning they told us surgery would be 4 hours, but it was a much longer day for our little fighter. After 9 long hours Mommy and Daddy finally got to see Cohen. Unfortunately, he was having difficulty waking up. He was very agitated, flailing about. Cohen resting, but is still sedated to help keep him calm. Please keep the prayers coming.

Update 8:00pm

Cohen is having a rough night. They still can’t get his pain level under control. Please pray for the medical staff to make the right decisions and to listen to his Mommy.

Heartfelt words my Mommy shared yesterday…Please say a special prayer for her and my Daddy.  They are strong…but everyone has a limit.  She and my Daddy are so #cohenstrong for me. 

This was a year ago today that I had to place my baby boy in the arms of another surgeon for another 6-8 hour long surgery..so as I sit here with anxiety running through my body and tears running down my face as I dread this upcoming week I also sit and thank God for giving me such a wonderful miracle, a wonderful inspiration to not only myself and his family but to everyone around us. These past few weeks has been nothing less than dreadful.. I pray that God will keep me strong and help me through these next few days.
I know that He will get us through it because He always has but to fathom my baby boy going through another major surgery like this has got me tore to pieces.. as I stand by his bedside and see him in pain as he looks at me wondering why I can’t help him or take it away.. I’m his mommy who kisses all his boo boos and makes everything better I’m his mommy that protects him 24 hours a day 7 days a week.. so to not even be able to hold my sweet boy for days or to even soothe his pain is an unbelievable amount of hurt. I pray that God will give me the strength.

Kayla

This is my ride. It’s my favorite way to travel.

My Daddy and Mommy get me out as often as they can because I LOVE taking walks and playing outside.

Gracie Dog Dog likes to ride too. Sometimes I let her take a spin with me.

It has been warm the last few days!

I love to throw rocks into the water. When I have a fun-filled day, there’s nothing like a car ride to help me fall asleep.