Pumpkin Fail

So a few weeks ago, I saw a really cute pin on Pinterest.  There was no way this would've worked last year- Cooper just did not have the head control at 2 months to make this work, so I was excited to try it now.


Here is the pin:

Source: Uploaded by user via Crady on Pinterest

Here was the reality:

On the other hand, our other pumpkin turned out pretty cute:

Cooper's newer schedule

Once again, we have a new schedule for Cooper.  The nutritionist at Children's basically gave us his formula and water requirements and told us to figure it out, which was just fine by me.  The way they were doing it in the hospital was ridiculous.  Plus, his breathing treatment schedule has changed.  So here it is:

8 a.m.- Breathing treatment:  2 puffs Albuterol, 2 puffs Atrovent, 4 puffs Flovent plus CPT's.  He also gets Sabril, Prevacid, Robinol (a new medicine that helps to dry up secretions), and 40 mL of water.

10 a.m.- "Eats" 125 mL formula through the pump.  It takes one hour to feed him now.

12 p.m.- Breathing treatment: 2 puffs Albuterol plus CPT's.  He gets another 40 mL of water.

2 p.m- "Eats 125 mL of formula.

4 p.m.- Breathing treatment: 2 puffs Albuterol plus CPT's.  He gets 40 mL more water.

6 p.m.- "Eats" 125 mL of formula.

8 p.m.- Breathing treatment:  2 puffs Albuterol, 2 puffs Atrovent, 4 puffs Flovent plus CPT's.  He also gets Sabril, Prevacid, Robinol, a puff of Nasonex in each nostril, and 40 mL of water.

9 p.m.- We hook him up to the feeding pump for his 10 hour overnight feed.  He "eats" 39 mL an hour.

So his grand total is 765 mL of formula and 160 mL of water.  Plus he gets breathing treatments every four hours throughout the day, but we don't have to do them overnight.  This schedule is easier for me to wrap my head around than the other one was.

Pumpkin Patch

We FINALLY got to go to a pumpkin patch today and we got 2 big pumpkins!  It was a beautiful hour; 55ish, sunny, and just perfect for picking out some pumpkins.  Coops had a good time, then got tired.  I think that these types of things overwhelm him a bit.  Here are some photos:

Cooper is more interested in his hand than in the pumpkins.

"Daddy, I don't want to be a shark!"

Starting to get sleepy.

Now he's happy!!

They also had a big field of sunflowers.

Brad being artsy.

Cooper's home!

We got home from the hospital last night.  It took Cooper a little while, but once he figured out where he was, he was SO happy!  I was so glad to have my whole family at home and under one roof.

Today, for obvious reasons, we had a lot of errands to run.  We had to get Cooper's prescriptions, order his new food from WIC, run to the library, and go to the grocery store.  While at the grocery store, a couple of fun things happened.  The first is that Cooper is really getting curious about things.  We were picking out onions, and he would stare intently at one, then grin.  He did this with a white onion, a yellow onion, and a purple onion.  I don't know what it was about them that got him so interested, but it was really cute seeing him grinning at those onions!

He also tried some soy sauce.  We grabbed some sushi for lunch at the grocery, and just ate there since we had an hour to kill.  I would dip a chop stick into the soy sauce and he would happily lick it off.  Soy sauce?  How is that something he enjoys?

The other thing was that we randomly ran into Dr. Becton, Cooper's pediatrician.  She was so happy to see Cooper out of the hospital and in "real" clothes.

Good and bad things

Good things:  Cooper is quickly coming off of oxygen!!  He still needs a little (1/8 L) when sleeping, but when he's up, it's off.

So far, Cooper seems to be doing well with the new formula.

Today, Cooper was the happiest I've seen him in a long time.  He smiled a lot, was awake more, did some exercises for me and a speech therapist, and just seemed to be in a better mood in general.

Bad things:  We're having some trouble introducing bigger feeds to Cooper.  He's been on continuous feeds or Pedialyte for so long that his stomach just can't handle a significant volume all at once.  Do we're taking it slow and trying to get him all the nutrition he needs.

Yesterday, his lungs had a setback.  For some unknown reason, he had a LOT of crackles in his lungs.  They seem to be better today.  It was strange though and delayed some things, which may keep us in the hospital and extra day or two.

Cooper in his first pair of two-piece pajamas.  Thanks Zanette! 

Love his little grin!

Answers

Brad wrote this: Well, day 7, and we finally have what we think are some answers.  Cooper had a procedure today where they look at his upper gastrointestinal tract (esophagus, stomach and first part of small intestines).  They had to knock him out to do this so he's still really sleepy.  The GI doctor initially said there was a 20% chance that this would uncover anything significant, but once he got in there he saw several concerning things. There was a good bit of inflammation throughout the last part of the esophagus, the stomach, and the small intestine.  In addition there were several visible lymph nodes in the first part of the small intestine.  These findings, when taken in the context of his poor tolerance of pediasure and his improvement on a pedialyte only diet, are suggestive of a milk protein allergy.  This is great news! This means we can start him on an elemental formula, something that's already broken down into its constituent parts that doesn't have milk protein, and hopefully he'll improve.  Also, his lungs are definitely on the mend. We plan on starting the new formula tomorrow. All together, this means he might be able to go home as early as Sunday or Monday and without oxygen!  Thanks for all your thoughts and prayers; Coop appreciates it!

The Magnificent Seven

First, all seven specialties showed up! Yay! I think this shows what a great resident Brad is and what a special kid Cooper is.  We're going to try a few new things, and do a few tests to rule some things out. First, for 24 hours he's going to be on pedialyte. Then we're going to try a different formula. One that is not milk based. This will rule out a milk allergy, which babies can get after the first year or so. If he still heaves and wretches well know he's fine with milk. If not, problem solved!

In the meantime, he's going to have an ultrasound of his brain to rule out any neurologic causes of the vomiting. He is also going to have a GI scope to make sure his esophagus and lymph nodes are ok. Also, they're going to do some labs to make sure his electrolyte levels are good.

Looks like we will be here through the weekend while all of this is happening, but at least now we have a game plan and are being proactive instead of just responding to symptoms.

New Doc

Yesterday, we got a new pulmonary doctor.  He is amazing.  He was the first doctor, to walk in and basically say, "I've read his charts.  I'm tired of just treating the symptoms.  I think it's time to figure out what is really going on."  FINALLY!!!  So, he (and his resident) have spent the last couple of days lassoing doctors to attend what I'm calling a "meeting of the minds."  Tomorrow at three, 7 attendings will meet to discuss Cooper.  The magnificent 7 are: his pediatrician, Dr. Becton, his neurologist, his geneticist, his ENT doc, the GI doc on service, a cardiologist, and the new pulmonary guy.  Hopefully, those great minds will be able to figure out what is going on, or at the very least, get a game plan together to figure out what is going on.  I'll let everyone know tomorrow how it went and what we're going to be doing!!

How I Feel

People have been asking how I am feeling.  Here are some things I feel:

1. Tired- I am tired in every way it is possible to be tired.  Physically (sleeping every other night in a hospital room is not conducive to a restful state).  Mentally.  Emotionally.  Spiritually.  I'm literally almost to the point of exhaustion.

2. Frustrated- The question no one can seem to answer is why.  Why is Cooper refluxing this badly, all of a sudden?  Why is he aspirating all the time?  This is new.  He may have done this a little in the past, but never this much and never like this.  Are we just treating the symptoms?  Is there an bigger, underlying problem we just can't see or haven't found?  Where is the real-life House when you need him?

3. Angry-  See above.

4. Thankful-  Yep.  Even with everything going on, I read things like this and know that it could be so much worse.  Really, read that article.  Cooper may not have a terminal illness, but that is how I feel.  I have had to change my expectations as a parent.  And that is fine, but if you haven't gone through something like that, it's hard to imagine and truly understand.  So yes, I feel thankful all the time that everything that Cooper has, and has had, has been fixable.  And whatever the future may be or bring, at least he has a future.  Also, I'm thankful that we live in a place with amazing doctors.  I'm thankful for our amazing friends and families who are constantly doing the most simple, little things to remind us that they love us and care about us.  Four guys came over and built us a patio.  Robin called to see if we needed any groceries.  Sarah is coming to stay for a couple of days, just because.  We are one lucky family.

Cooper has a thing for passing out of Jessica; he did it every time she held him.  Also notice the accidental LSU colors.  Extra funny considering Tennessee got their butts kicked by LSU that day.

Coops with his new monster from the Godparents.  Notice that the face Coops is making is exactly the same as Cooper's face.

5. Happy- So happy and excited for our wonderful friends Matt and Sarah Bell.  They just welcomed their beautiful daughter, Hollin Elizabeth, into the world.  I can't wait to cuddle with her next month!

Why We're Back

So we are back in the hospital.  Friday, Coops had an "acute aspiration event."  Basically, he pooped while he was eating a threw up.  When he threw up, he breathed in some of his milk, causing more lung problems.  So we're back.  And trying some new things.  The GI people have started him on a medicine to get his stomach to empty better.  Plus, he's back on a stool softener.  The pulmonary guys started him on a medicine to dry up some of his spit (since he chokes on it).  They're also pushing for us to do a G-J tube.  The benefits are that it is basically impossible for him to reflux and aspirate because the food goes straight into his small intestine.  The problem is that he would have to be on continues feeds.  He would be attached to a feeding pump 24/7.  This would greatly hinder our current lifestyle.  Therapies would have to be changed or put on hold.  It would make it ridiculously hard to go anywhere.  It would suck.  But, if his lungs are so sick that he can't get off of oxygen, it may be what we have to do.  He can't grow and develop unless he is well, but he can't get well unless he can grow and develop (and get better at swallowing and feeding).  It's a conundrum.

In other news, we have a patio!  Brad, Peter, Shane, Craig, and Alex (at different times), built a brick patio in front out our house yesterday (pics coming).  Jessica and I got lunch and then spent the afternoon watching our football team lose and hanging at the hospital.  Brad got his man day in exchange for two nights in a row at the hospital, so I can get some very much needed sleep.  Also, we found out that we could get some counseling and bill it through TEFRA, since they allow parents of chronically ill kids to bill them for counseling.  So that's going to be good.

Medical Equipment

Cooper is home, but with all the medical equipment he is using, it feels like he is still in the hospital.  Here is what he's got:

The machine on the bottom is the pulse-ox.  The green number on the bottom is his pulse, and the red number on the top is his oxygen level (kinda low right now, but not enough to worry about).  We'd like his oxygen level to be 94 and above all the time.

The machine on top is the pediatric oxygen machine.  The adult oxygen compressor starts at 1 L per minute.  This machine goes from 1/8 of a L to 3/4.  Cooper is usually between 1/4 and 1/2.

This is the oxygen compressor.  It's so Cooper can breathe.

This is a travel oxygen tank.  We have 4 or 5 of these.  It comes with a little backpack too.  We also have a much bigger version of this, in case we lose power.

This is his feeding pump.  Food goes into the bag, through the tube, and into his stomach directly.  During the 3 daytime feedings, it takes about 30 minutes for him to "eat."  He also "eats" for 12 hours overnight.

And last, but certainly not least, is the suction machine.  When we give Cooper breathing treatments, we break up stuff in his lungs.  This helps us get that gunk out (through the nose).  He HATES this machine.

Even with all of this, Cooper seems to be his normal, happy self.  He is one strong little boy!!

Friends are our Little Rock family

We don't have any family in Little Rock.  My parents are closest at 2.5 hours away.  Plus, Dr. B works ALL THE TIME, so even if we had close family, we wouldn't be able to see them very often.  Luckily, B is in pediatrics.  And they are like a family (dysfunctional and everything).

For example, last night, Leigh-Ann and Washer brought us dinner.  We had just gotten home from the hospital and man did we need a home cooked meal (hospital food is only good for so long).  And then today, I got really paranoid about how Cooper was breathing.  Amanda Martin had an early day and she agreed to come over and listen to him.  She hung out for an hour or so and proclaimed him just fine (thank goodness!!).  Last, Diane, Cooper's physical therapist, came over to help me move and bathe Cooper.  Since I'm basically a shut-in for now, it was great to see people.  Plus, I love that so many people love Cooper.  And, I love our little "family" here in Little Rock.

He's home!!

Cooper is home from the hospital on a couple of conditions.  One, he's still on oxygen.  A pain, but better than being in the hospital.  Two, we have to continue to give him breathing treatments every four hours (except for the one at 3 a.m.).  Fine, just get us out of there!

The pulmonologist wanted to change Cooper's g-tube to a j-g-tube.  I didn't want this for a couple of reasons.  One, it would mean he'd constantly be on continuous feeds.  He would literally be attached to a feeding pump at all times.  For 6-8 months.  Also, it would mean a small surgery.  So, she consulted with GI.  The GI doc was much more practical.  We are going to try several things before deciding to change his tube.  We've changed his feeding schedule and the way he is feeding.  If that doesn't work, there's a medicine we can try.  If that doesn't work, we can change his formula.  Etc.  The concern is that he is aspirating when he gets his food (even though the study they did this morning showed he wasn't).

So we're home with a whole new schedule.  Including all medicines, feeds, and breathing treatments, here is Cooper's (complicated, confusing, almost terrifying) schedule for at least the next few days:

Cooper’s Schedule

7 a.m. - Flovent

           Albuterol (CPT)

           Atrovent

8 a.m. – Stop overnight feed

            Prevacid

            Sabril

11 a.m. – Albuterol (CPT)

            Feeding (110)

2 p.m. – Feeding (110)

3 p.m. – Albuterol (CPT)

           Atrovent

5 p.m. – Feeding (110)

7 p.m. – Flovent

           Albuterol (CPT)

8 p.m.- Prevacid

          Sabril

          Start 12 hour feed (350)

11 p.m. – Albuterol (CPT)

           Atrovent

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.