Still in the hospital...

It's Brad's night in the hospital, so I'm back.  We were hoping he would be able to get off of oxygen today, but that just hasn't happened.  He does well for a little while, but then doesn't.  Very frustrating!!  He's on 1/8 of a liter, which is basically room air.

We found out today that on x-rays, Cooper's liver was looking a little big.  They thought it was just the x-ray image being distorted, but of course they had to check.  They checked his liver output and that's fine.  Then they did an ultrasound of his liver, but we haven't heard back on those results.  So, we're pretty much where we were yesterday.  Tired of being at the hospital and waiting for Cooper to stop being dependent on the oxygen.

The idea has been floated that for a little while, we could take him home and give him oxygen at night, but I don't know about how I feel about that.  It is something to discuss as a way of getting us home.  At some point, the hospital will do more harm than good and I want Cooper out of there before that, so we'll see.

Our wonderful friends, Kara and Ryan, sent Cooper a balloon and giraffe:

Brad and Cooper taking a cat nap today.  We had to put Cooper back on oxygen very soon after this was taken.

Brad takes over

Hey it's Brad... I'm Crady's proxy blogger while she's at the hospital with Coop. He's doing better, but he's still on about a 1/4 liter per minute of oxygen and can't quite get wean all the way off.  Cooper had an echocardiogram yesterday that showed he has a patent ductus arteriosus.  So today the cardiologist came by the room and discussed how we close the ductus.  He needs cardiac catheterization similar to the procedures 60 year old men endure to correct narrowing in their coronary arteries.  A catheter is inserted in one of the blood vessels in the leg and snaked up towards the heart.
To treat Cooper a device is implanted in the duct connecting the two arteries and it is expanded.  Over a period of about 6 months the duct will scar down around this device and completely seal off the connection between the two arterial circuits.
So all will be well and good once we can have the procedure done.  Herein lies the problem.  Cooper's lungs aren't ready for anesthesia. The cardiologist was quite certain that the anesthesiologist won't touch him until at least a month out from his current illness. So we have to wait.
On top of this, Cooper can't go to school for a month due to the risk of contracting another viral illness.  So he's going to miss out on his therapies for an entire month.  To add to the stress we're supposed to go to Denver for a wedding in two weeks and putting Cooper on a plane and exposing him to everyone between here and Denver with a cold is also too risky. Also, Crady's sister is getting married in a month and we are crossing our fingers and hoping that we'll be able to make that wedding.  AHHHHH!
Well the silver lining is that Cooper's EEG from yesterday looks better than it ever has, so there's that.
At the end of the day he's still adorable and incredibly strong and I love him dearly.

News

It has been a loooong day.  Cooper had a chest x-ray last night.  It just showed more of the same- junk in his lungs.  At least we're on pulmonary team and they finally seem really serious about getting rid of that stuff.  He is not going to eat for 3 months.  Nothing.  No solids, no bottles.  Nothing.  We're going to get him exercises to do in the meantime so he doesn't loose all of his eating ability.  He had an EEG this morning, since he hasn't had a seizure in 2 and a half months.   This has nothing to do with why he is currently in the hospital, but since he's here, his neurologist wanted it done.

This afternoon was the big thing.  The pulmonary team wanted him to get a heart echo to make sure he didn't have pulmonary hypertension (he doesn't).  While they were doing that, they discovered he still has a patent ductus arteriosus.  Here is Brad's explanation of that:

A patent ductus arteriosus, or PDA, is a connection between the pulmonary artery and the aorta. This connection is normal in a fetus that is in the womb.  Once the baby is born the ductus closes with the infant's initial breaths.  In some children the ductus does not close.  The end result is increased blood flow in the pulmonary vasculature and the left side of the heart.

Ok, I'm back.  Cooper had this at birth.  He had an echo when he was a few days old that showed this, but we were told it was really small and would go away.  Obviously, it never did.  So, the cardio people are going to put a coil into the hole so that the heart tissue scars around the hole, sealing it up.  If you know anything about my mom's aneurysm, it is similar to what she had done.  They can't do that until his lungs are ready for anesthesia.  And they can't do any other surgery (including the hypospadias repair) until they fix the hole.  This is because if the surgery caused a blood infection, it could get into his heart through that hole and cause major problems.  So glad we've already had 2 surgeries with this (sarcasm, people!).

So that is where we are now.  Cooper is still in the hospital.  He's good on one liter of oxygen.  Now that all his major procedures are done, we'll start weaning him off the oxygen.  No idea when he'll go home.  More later!

Quick Update

Cooper was supposed to have a scheduled urology surgery tomorrow. It's been scheduled for about a year.

Today, we went to neurology. Everything great there. She wants to do an EEG to see if his brain waves are normal now.

Then we went to medical home clinic. While there, he was "grunting." This worried the doc enough that he wanted to get a pulse-ox on him. His oxygen levels were between 82 and 86. Way too low. The doc contacted pulmonary. They decided it would be best to admit him. So, no surgery tomorrow. Instead, we'll be hanging in the hospital. Story of my life, it seems.

Awesome Dr. Appointment!

Today, Cooper had an endocrine appointment.  It went the way that I wish all doctor appointments went.  Everything is fine, no labs needed, and Cooper doesn't have to come back unless he falls off the growth chart (so maybe never)!!!  The resident was our good friend Kenneth, and I think he had a lot to do with the decision by the attending to just let his growth be followed by his pediatrician, instead of coming there to get measured.  So we now have one less doctor to worry about, one less doctor to see.  Next week, Cooper sees neurosurgery.  That should go the same way.  He is going to measure his head circumference and if it hasn't gotten too big, we'll never have to see him again!  Two doctors down in one week = best week ever!!

Dinner

Just because I'm REALLY proud of myself, our dinner menu for tonight:

*fresh baked bread (NOT from a machine)

*chicken and corn chowder (from scratch)

*chocolate sour cream cupcakes with a nutella frosting (also all from scratch)

The soup and bread were awesome and the cupcakes are baking up nicely as we speak!!

Scary Stuff

Earlier this afternoon, Brad, Coops, and I were about to head to the grocery store.  From the living room, we heard someone open our glass door then try to open the front door (thank God it was locked).  Brad ran to the front and opened the door.  A guy was standing there.  He claimed to be looking for work.  Brad got rid of him.  When he came back in the room, I told Brad that he had to call the police; that guy just tried to walk into our house!!  He called the police and told them what had happened.  I, for obvious reasons, did not feel comfortable leaving right then, so we went outside and watered the plants.  We could see the guy wandering down the middle of the street, occasionally going up to someone else's house to knock on their door.  When he got way down to the edge of the street, we decided to go ahead and go to the store.  When we got to the end our our street, a police officer turned onto the street.  When we got to the main road that goes through our neighborhood ANOTHER police officer turned into our neighborhood.  I felt good that in about ten minutes, without calling 911, two police officers were checking up on our call.  I don't know if they found him, or what they could do to him if they did, but I feel good that the Little Rock Police Department is on top of things.  Hopefully, we have seen the last of that guy.  And I am going to make sure to keep my door locked during the day.