Another day...

We are still here, with little to no change. Jadon still requires the same amount of oxygen. We are on prilosec, orapred, albuterol followed by CPT (every 3 hours I might add), amoxicillin, ibuprofen every 6 hours rotated with tylenol every 6 hours. So ibuprofen at 9, tyelnol at 12, ibuprofen at 3...you get the idea, add in another dose of Miralax today and another suppository that produced a movement 4 hours later. Jadon has not had Lortab elixir at all today. He's slept comfortably, ate well and is drinking ok.

See what tomorrow brings I guess. Keep praying, Dr. Sufi says we cannot go home til he is OFF the oxygen.


"I will go before you and will level the mountains; I will break down gates of bronze and cut through bars of iron. I will give you hidden treasures, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name." Isaiah 45:2-3 (NIV)

Sooooooooo close

We were sooooooooooo close to going home. The Resident said, "Yes." The pulmonologist's nurse practitioner said, "Yes." So why aren't we home? Well, because, then...then, the pulmonologist did come in and he said, "NO." His word stands and here we sit.

We are now doing CPT every three hours, breathing treatments every three hours, did chest xrays and here we sit.

Jadon still cannot breathe room air, I still do not have the results of the chest xrays, he still cannot be without 1 liter of oxygen while sleeping.

His tummy was very hard and distended today. We administered Miralax and a suppository. We did have success! And my boy has been fluffing the air with gas strong enough to ignite a bonfire. He has also dropped some black slugs out of his nose (ewwwww). So while my son is GROSS, he sure is cute!!!

VERDICT IS IN!!!!!!!!! 

Jadon has pneumonia (let the booing and hissing begin)

*which means he truly is his mother's son, I too was teetering between 

walking pneumonia and bronchitis earlier this week and had NO idea I was that sick*

"I will go before you and will level the mountains; I will break down gates of bronze and cut through bars of iron. I will give you hidden treasures, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name." Isaiah 45:2-3 (NIV)

Wow, Merry Christmas to Jadon

Today is Christmas day in Ukraine...I had hoped to celebrate some Ukrainian traditions this year. That did not happen...we are still in the hospital, of course.

We have left the PICU, we arrived in room 4008 at about 3:30 this afternoon and Jadon stayed awake the entire time until bed time at 6:15 following a dose of lortab, which came after a nice hearty dinner of mashed potatoes and mashed bananas. When we arrived up here today, he ate pudding, applesauce, jello and drank some more gatorade.

The boy will eat, no matter what, he will eat. I know he's experiencing pain and discomfort by the struggle to swallow and wincing..he will not cry. I hate this. He only cries when we give him the Lortab (it tastes AWFUL).

He is on .5 ltrs of oxygen right now. However, this is only sufficient when awake. As soon as he falls asleep, he desats into the 80's. No bueno. Now, IF I can keep him on his tummy, he does not desat even while sleeping; but, soon as he rolls, even just to his side, he desats. So, I am calling it now, we will be going home with oxygen tomorrow.

I've got coursework to do. Nite, thank you all for the prayers. They mean the world to me and my family.

Love,

"I will go before you and will level the mountains; I will break down gates of bronze and cut through bars of iron. I will give you hidden treasures, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name." Isaiah 45:2-3 (NIV)

Oh what a night....

Early January back in 2012...

Ok so that is NOT how the song goes, but it's all I've got. January 6th, 2012, Jadon went in for surgery that took a half hour to complete. Tonsilectomy, adenoidectomy, and cleaning of his ears (impacted with sebum).

Well, my baby took over an hour in recovery. Two breathing treatments later (one Albuterol and one Racemic given via nebulizer) they let me come back to be with him. I administered a 2nd Racemic to him myself. We then left for the PICU floor. Jadon's saturation levels plummeted to just 79 in a matter of 4 minutes.

My baby was gray, his lips were blue, his hands and feet purple and he could not make a sound. At all. They bagged him right in front of me and began manual manipulation of breaths for him. They did so for about 2 minutes. They then put oxygen on him.

Since then we have had several times of bradycardia (low heart rate), fevers, a few episodes of apnea with respirations in the low teens, and general unhappiness. Poor peanut.

My baby has had a rough day. Yet, he cries little. He has welcomed my touch, preferring only to be held by me in the beginning of all of this. He is resting well. We are on a pain management regiment of Lortab elixir (ewwww) and ibuprofen (yes!) and decadron still. He ate a container of applesauce, signing "more" when it was finished and signing "eat" before I gave it to him. He also drank 4 ounces of lemon-lime Gatorade too with his thickener.

We are trying to see what mixture of oxygen baby boy needs and wean him off. However, he was given Lortab just 30 minutes ago and he cannot maintain his oxygen levels with oxygen in his sleep...crud.

Here are some pictures from today...some scary some sweet.

Nite, nite...

 "I will go before you and will level the mountains; I will break down gates of bronze and cut through bars of iron. I will give you hidden treasures, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name." Isaiah 45:2-3 (NIV)