This week, we had our first cardiology appointment since leaving the hospital. It was basically a follow up to see how things were going with Joshua and also to hear what the Stanford team had to say about the possible surgery.

We started out the appointment getting Joshua a chest x-ray.  Dr. Su (our cardiologist) used it to make sure there was no change in Joshua's heart size and to make sure there was no fluid building up.  Everything looked great.

Other good news was the oxygen.  Since Joshua seems to do pretty well on room air for the most part, he really doesn't need to be on it all the time (hurray!).  Basically, we watch his coloring and keep him on the monitor to watch his stats.  If we notice the stats going down, we can put the oxygen back on.  It is just nice that we are not so tethered down by the tubing all the time!!

The main thing we talked about with Dr. Su was what the team at Stanford had to say about Joshua's possible surgery.  In the short, they were very confident in their ability to complete this first surgery and have it be successful...VERY confident.  This was a relief to me since the cardiologists at Primary's seemed so unsure about it.  However, the surgeons at Stanford are world known for this type of surgery.  There are three things that they would do for this surgery:

1) Unifocalization of the collaterals and Pulmonary Artery:  This means they would take all the collaterals (the "veins" basically doing alot of the work the pulmonary artery should be doing) and the very weak pulmonary artery and putting them together.  This would lower the pressure in the lungs.

2) Create a connection between the ventricle and the pulmonary artery.   One thing they are going to try and accomplish with this is strengthening the existing pulmonary artery.  By pumping more blood through it, the hope is that the tissue will strengthen.  This would be important if the collaterals ever started to shrink.

3) Finally, they would fix the total anomalous venous return.  Right now, Joshua's blood coming back from the lungs to the heart is taking a very round about way.  The surgeons would create a shorter pathway.

We are still trying to decide if surgery is the right way to go.  We still need lots of prayers in our behalf for that.  I am struggling with figuring out whether my feelings are Heavenly Father or if they are just me being an over-protective mother.  It is difficult to think about putting Joshua through surgery when he seems to be doing so well.  It is hard to think about how much he would have to go through if we went that route.  However, it is really hard to think about him getting worse and knowing there was something we could have done if we had acted sooner.  It is a difficult decision.

Anyway, we also had Joshua's 2 week well-child check with our pediatrician.  I can't tell you how wonderful our pediatrician is!  I feel so blessed because he has worked with lots of children with heart conditions and really understood the basics of what we are dealing with.  I was excited when I didn't need to explain exactly what all the diagnosis were...he already knew the implications of everything!  He is also wanting to follow him closely to be sure he is gaining the weight he needs to.  Joshua has not gained any weight since leaving the hospital, so we have adjusted his feedings (increase calories) and we will be going in for a weight check each week for the next month.  Other than the feedings and weigh issues, Joshua looks great!  Again, I am so excited to have a pediatrician I can trust!!

To close things up today, check out this cute picture I got of our little man!! Smiles already!

First off, tomorrow we have a cardiology appointment.  We are hoping to hear news from the Stanford team in regards to their opinions on the surgeries.  We are also hoping they tell us that Joshua does not need his oxygen...breathing room air is the goal!!

I am feeling a little anxiety over this appointment.  Hopefully, it is not too emotionally draining...

In the mean time, I wanted to document the different stuff that our little Joshua needs now that we are home. This is the equipment we have been using the last week! All of it has been provided by a home health company.  I have to tell you, I never thought I would need a home health company in my life...but I am grateful they are around!

Feeding tube pump.  Because little Joshua is still having a hard time finishing his meals by mouth, he still needs to take about half the milk by feeding tube.  This is the pump we put it in.

Oxygen tank.  Little Joshua is on a little "whiff" of oxygen right now (For those of you familiar with oxygen dosage, he is on .06 L...sometimes .03 L) This tank sits in our bedroom...away from Logan :)

The oxygen tank stays in our bedroom permanently and Joshua is connected to it by this tubing...it is about 50 ft. long.  Having him on a "tether" can be tricky at times, but we stay in the living room most of the time, so it is not too bad.

Because of Joshua's special eating needs, I have been pumping milk from day one.  We tried nursing in the hospital a couple times, but it gets tricky knowing if he is getting enough, so I find it easier to just pump.  However, I have never had my dish drain look quite like this before.  We have since added 3 more bottles to that mix. Lots of dishes...

Oxygen saturation monitor.  This is how we know his oxygen saturation levels.  He is connected to this little machine on his foot.  The top number is the O2 saturation (we want it between 75-85% saturation).  The bottom number tells us his heart rate.

Here is what little Joshua looks like with his tubes.  The orange one going into his nose is his feeding tube.  The clear one is the oxygen tube.  He is such a little trooper dealing with them!  Just to let you know, he does NOT like that oxygen tube up his nose, but he deals with it like a champ!

Sorry for the long wait on the update.  The last few days have been very emotional and the last thing me or Tim really wanted to do was write about it.  However, I really want it written down so we can remember it all.

The last thing we talked about was getting his CATH procedure done.  This was done on Tuesday. This procedure is when they take a catheter tube and put it through a large vein in his leg.  They run it all the way up to his heart where they release a dye and they can see where the blood flows.  They can also measure pressures in different parts of the heart and vessels surrounding it.  This information was the last piece of the puzzle the doctors needed to figure out the best way to move forward.

On Wednesday, Joshua was moved out of the CICU and up to the floor.  This has been nice, since they are not as strict with visitors and we have a little more room to breath.  The only reason we are still in the hospital now are feeding issues.  We are working with him on that.  He needs to be taking about 65cc (I think it is about 2 oz?) of breast milk at each feeding.  Right now, he can handle about 10-20 cc (about 1/3 of an oz) by mouth and then another 35-40 by feeding tube.  We will work more with him over the next few days and hopefully get home soon.

Now, for the really hard update....once the doctors got all the pieces to the very complex puzzle that is our son's anatomy, we anticipated them coming to us and telling us what they thought was the best way to proceed...then we would simply tell them that we agree and move forward with that plan.  What we did NOT anticipate was having to make a choice, a very difficult choice: To operate or not to operate.

There are several issues with Joshua's heart, and all combined, make the surgeries very high risk and very complicated.  The first surgery would most likely be at Stanford if we chose that route.  The surgeon at Stanford is the best in the world for the procedure that needs to be done.  He's done the most, but not as complex as our little guys.  He's only operated on about 14 kids in the last 25 years with what our son has--6 of which are still alive.  There isn't much information on how to treat this the best.  And this is just the first of many surgeries he would need. On the other hand, if we simply felt him alone, there is a possibility that he would live a relatively long life, but not necessarily.  He could live 2, 5, 10, 20, maybe 40 years...we just don't have any idea. What makes it even more difficult is that half the cardiologist say not to operate, the others are saying it's the best option.  The vote is very split and ultimately, it comes to what we decide.

We have been relying heavily on our Heavenly Father to help us make this extremely difficult choice.  We went through a session of the temple this evening and Tim and I felt some very strong promptings, but we still plan to get as much information as possible.  In the mean time, we are soliciting the prayers and faith of all our friends and family at this time.  We are going through a lot of turmoil as we try to make the best decision for Joshua and for our family. 

Now, for tomorrow, Joshua gets another test done.  This test will tell us if his stomach is on the wrong side and if he has mal-rotation.  Mal-rotation (i'm not positive on the spelling) is when the intestines are not rotated correctly, thus a kink in the intestines becomes much more likely. (I think of a garden hose when thinking of this concept).  If there is malrotation, we would have to consider a surgery to fix that as well, depending on the severity of it.   

The doctors are great here and we feel very supported from all sides--family, friends, coworkers, medical staff, and of course, the Lord.  Again, please keep little Joshua and our family in your prayers.  Thanks for everything!!