Doctor wrap up

We had to have a meeting with Doctor Penn to wrap up how things have gone since Biggun got to the hospital. It's blunt, but here it is:

His PIE leak resolved but then another developed which suggests continued scarring of the lungs. He's also developed a pneumothorax in his right lung which is causing difficulty in treating the PIE. Right now they have him laying on his left side, but they warned us that if the lung collapses as they want it to, then he will be extremely unstable while his body recovers. But right now I watched him struggle at 90% oxygen with both lungs.
The x-rays have been hazy, indicating there is fluid in the lungs. They are keeping him off IV fluids and giving him Lasiks which is a diuretic to pull some of that out.
The site of the IV infiltrate will not have long term damage, but they've lost it as a site for IV for now.
His IVH bleed hasn't changed, which is good news. No blood has physically touched brain tissue, so they are optimistic.
Because he hasn't eaten yet, they are very worried about infection in his intestine. He has no "good" enzymes developed yet because my milk would have stimulated their creation, and they can't feed him yet because of the medication he has been on. So it's another wait and see.
They also tell us he will likely suffer ROP.. Which is a form of detachment of the retina from high doses of oxygen. He may need glasses, or he might just be blind. We won't know for awhile on that either.

She mentioned he is at greater risk for pulmonary hypertension and he will most definitely likely suffer from chronic lung disease at this point.

She also said we are still between morbidity and mortality. That we are still in danger of his stats being unstable and him taking a turn for the worse. He's a fighter, and constantly wiggling, which is good. But they give him Versed and morphine to calm him. Versed, if I spelled that right, is what they give to surgery patients who have anxiety before a procedure. So he's at least feeling pretty dang happy.

Please pray for us. She is being blunt and honest, but it still was very sobering to know we are still in a dangerous statistic zone.

Picture of the little guy doing a leg lift!

Much love,
Rachel and Joshua

Baptism

Little Biggun was baptized as Joshua Daniel today at 1:30 pm with dad and Ms. Amanda Samford present. It was a beautiful ceremony and he is doing well.

His update hasn't changed much. He's getting plasma right now, and his hand looks a little better. Still pretty puffy and they are treating the skin wound with antibiotic ointment.
He is still needing suction of his lungs because he can't cough up mucus. They are having issues getting a pulse ox from his left foot for some reason, but his toes are wiggling and he moves that foot, so they aren't sure why.

Oxygen is around 52%, and his BP is needing dopamine to stabilize again, but he is currently being weened off that in the hopes they can take him off it.

Sending love from California!

Much Love,
Rachel and Joshua

IV infiltrate

Biggun has had an off day, starting out at 68% oxygen and he is getting another head ultrasound tomorrow so that the doctor can follow up with us on Friday. The doctors do two weeks on, and his current doctor finishes her two weeks and wants to ensure she leaves us with a good cover of his condition and the last two weeks.

He also had an IV infiltrate during a plasma transfusion and they didn't realize it because of the tape so the plasma went into his arm for awhile before they realized what was going on. But when the nurse went to take the tape off to look at it, it pulled his skin off. The IV location can't be reutilized so they had to use one in his head.
We are heading back to the hospital just to check up on him, but just wanted to write a quick update.

Much love,
Rachel and Joshua

Post surgery recovery

Biggun is having some difficulty recovering from surgery. They have him on the oscillator again and he does really great for awhile and manages more at 21%, but then his oxygen saturation bottoms out and they have to bump him back to 60%. They say this is a result of recovering from surgery.
The PIE is slowly doing better. They gave him a diuretic to help clear up some of the haziness in his lungs, and the progress is already apparent. He's having x-rays every 12 hours to monitor the fluid build up in his lungs.
Nothing more on the IVH level 2. His follow up ultrasound is Friday, but they will do one sooner if his head circumference changes.
They gave him Ativan tonight to help with moving him. Every 12 hours they flip him in the bed so his head doesn't get stuck in one position.

He was pretty comatose while we were there, but he was on pain medication and Ativan. Hopefully time will make him feel better.

Pray for a speedy recovery!

Much love,
Rachel and Joshua

Note: on the photo, you can see the tiny incision under his arm. They spread his ribs to put the titanium clamp in.

Post surgery

Surgery went well. Biggun is recovering now and we should see how well it does tomorrow.

PDA Ligation

Biggun is currently undergoing surgery for his PDA right now. They turned the room into an OR, and kicked everyone out.
Prep time is about an hour. Then surgery will be anywhere from 10-40 minutes.

Pray for him.

Much Love,
Rachel and Joshua

Surgery

Biggun had a pretty rough night. They think the PDA fully opened back up so they are pushing for surgery today. This is both good and bad...
Please send prayers. He can't handle much more fluctuating of stats.