72 hours extubated! - November 14, 2013

Owen has now made it for 72 hours off of the ventilator and on CPAP.  This means he is most likely off of the vent for good!

His voice is very hoarse and soft, but it is getting louder every day.

His eye exam showed no major change since last week.

His ECHO showed that his heart is getting a little bit too thick.  They are going to give him medication to slow down his heart rate and lower his blood pressure.  This will be watched very closely.

He is down to 4lbs. and 14ozs.  They are giving him extra protein along with the 42ml of breastmilk that is fortified with 24 calories.

His lung x rays look a lot better today.

Unfortunately, Owen has a bilateral hernia in his groin area.  Unless things change for the worse, he can wait to have this surgery right before he goes home.

The bad thing about surgeries (he will have hernia and possible eye surgery) is that Owen will have to be put back on the ventilator during and shortly after.  We want to be able to wait as long as possible to have any surgery.


Praying for:

• Bones to grow stronger
• Lungs to function better
• Infection to stay away
• Heart problems to heal
• No long term effects from the steroids
• Getting stronger
• Eyes to grow properly
• Blood clotting issues to be solved completely

Extubated - November 12, 2013

We had several changes of plans yesterday.  Originally, Owen was supposed to go to the O.R. and get a laryngoscopy.  Depending on the results, we were going to leave him extubated and on CPAP.  The procedure got moved to later in the day and the extubation after the procedure was cancelled.  Finally, we got bumped from the operating room and rescheduled for Wednesday.  It was late but the doctor gave the go ahead for the extubation.  If all went well, then we could most likely avoid the procure on Wednesday.

Owen was extubated and put on CPAP (CPAP is basically a nose mask that helps air move).  He has now made it over 24 hours on CPAP!  Hopefully he won't have to go back to the tube!  24 hours is the first milestone.  He really needs to make it 72 hours to be sure that he will tolerate it.

He is going to get an ECHO tomorrow to make sure that his heart is still pumping correctly.  Right now they think he is just a little dehydrated but they want to be safe.

Owen is also due for another eye exam tomorrow.  We will have to wait and see if he can tolerate this.

His lungs look slightly worse today.  This back and forth of his lungs will be an ongoing thing and it doesn't mean that he is doing bad.

He is still eating well.  He is around 5lbs 5oz now.

His skin is starting to turn pink again!


Praying for:

• Stay off of the ventilator!
• Bones to grow stronger
• Lungs to function better
• Infection to stay away
• Heart problems to heal
• No long term effects from the steroids
• Stopping the Bronchospasms
• Getting stronger
• Eyes to grow properly
• Blood clotting issues to be solved completely

Amazing picture of a floating head and two hands

CPAP

I can do it myself

Extubation tomorrow! - November 10, 2013

Owen turned 2 months old today.  He celebrated by getting his 2 month shots!

His lungs have looked better for the past two days.  He has done well on the CPAP ventilator trials.  He has mostly been resting and growing over the past two days.

Owen is taking a trip to the operating room tomorrow.  They are going to take him there so they can take pictures of his throat.  They are checking to see if some parts of his throat are fully developed yet.  The doctors need to know this because they are going to try and extubate him tomorrow!  These pictures will help us determine the best position for Owen when he is trying to breath on CPAP and off of the ventilator.

He got an eye exam today.  The very nice doctor made a special trip up to the hospital to give Owen his exam a day early.  They didn't want him to have an eye exam on the same day they tried to extubate him.  He still sees some minor and normal for his age problems.  There were a couple of hemorrhages in his right eye that weren't there last week.  This seems to correlate with the clotting problems he had in his throat.  Hopefully they are or have figured out the clotting problems.

He is on day 2 or 3 of another 6 day course of steroids.

Praying for:

• Stay off of the ventilator tomorrow!
• Bones to grow stronger
• Lungs to function better
• Infection to stay away
• Heart problems to heal
• No long term effects from the steroids
• Stopping the Bronchospasms
• Getting stronger
• Eyes to grow properly
• Blood clotting issues to be solved completely

Do horizontal stripes make me look fat?

Yes

Birthday cookie

2 months old today!

Owen's paddle - November 8, 2013

Owen's lungs looked a great deal better today.  It looks like the temporary fluid restriction is working.  They added a little vegetable oil to replace to the extra volume of feeds they cut out.  This adds more calories without as much fluid.

His kidneys seem to be working correctly.

His liver is still headed in the right direction.

He is still getting blood out of his breathing tube.  We feel like it may be getting more mucus mixed and less of it.  Both of those things are good.

Owen seemed very relaxed and did well on the CPAP ventilator trials all night and into today.  He still broncospasmed a couple of times but he recovered quicker than before.

He is getting new iv line this evening.  He has two more days of antibiotics through it.  Maybe it will be his last one for a long time!

Praying for:

• Bones to grow stronger
• Lungs to function better
• Infection to stay away
• Heart problems to heal
• No long term effects from the steroids
• Stopping the Bronchospasms
• Getting stronger

Zonked out

The nurse made Owen a paddle.  He was being to much like his daddy.

Cloudy Lungs - November 7th, 2013

We thought that they might try to extubate Owen again today, but his X-rays this morning showed that his lungs pretty cloudy, the Doctor thinks that it is just extra fluid and he is trying to dehydrate Owen to clear that up. He is giving him some extra diuretic and has stopped giving him the Plasma. This should help clear out the lungs. We will get another X-ray tomorrow morning. Today Owen's saturation levels were not too consistent, probably because of his lungs.

CPAP trial on the ventilator we well again today, they are doing them for 6 hours on and then giving him a break for 6 hours.

So far Eric and Amy's blood work for abnormal clotting factors has come back with no concern, there are a couple more that will take a little longer.

Praying for:

• Bones to grow stronger
• Lungs to function better
• Infection to stay away
• Heart problems to heal
• No long term effects from the steroids
• Stopping the Bronchospasms
• Getting stronger

My First bubble Bath!

It is kind of making me sleepy

I think I like it...

What are you looking at, I don't have Rabies, my dad thinks he is funny

Finally bed time!

No infections - November 6, 2013

Owen was a little unstable overnight, but he was lot better today.  The infections are cleared up for the time being.

He is still having some blood in his lung secretions.  No final results from all the blood tests yesterday.  He is a little low on one clotting factor so he is getting some plasma.

His lungs looked better today.  He did have a couple of bronchospasms.

His liver levels were a lot better today so they stopped the photo therapy lights for now.

Urine and stool output is still good.

He got put on another ventilator CPAP trial today.  He did good so another extubation attempt may come sooner than later.


Praying for:

Liver to function better

Bones to grow stronger

Lungs to function better

Infections to stay away

Eyes to work correctly

Heart problems to heal

No long term effects from the steroids

Stop having bronchospasms

A good picture of his new open bed with radiant heat

The rabies picture got a lot of interest from people, so here is further evidence of it.

Family blood tests - November 5, 2013

Last night they thought Owen might be running a fever, but it stabilized today.  They ran urine and blood tests last night just to be sure.  He is a lot calmer today.  We don't know if its because he is sick or  tired from being so crazy the last couple of days.

His lungs are ok today.  They are still suctioning out a lot of secretions from his lungs and there is still blood coming out.  A blood specialist is going to look at Owen's clotting factors.  We both went to get blood drawn, also.  They are checking for some minor genetic clotting factor defects that could make him clot too much.

His liver function is still slightly improving.

Owen had his last dose of steroids last night.  It is best to try to extubate while he is on steroids or within three days of discontinuation.  We have to get the infections under control and see what is causing the excess blood.

They increased his extra calories that are added to the breast milk again today.

The focus is to let Owen rest and figure out the infection and blood situation.

Praying for:

Liver to function better

Bones to grow stronger

Lungs to function better

Infections to stay away

Eyes to work correctly

Heart problems to heal

No long term effects from the steroids

Stop having bronchospasms

Eric swaddling yesterday

What mess?