A Lil' Boy's Journey to Live….

update 10/22

Riley saw Dr. Szwast today.  He has gained alittle more weight…coming in at 12 lbs. 11 oz.  Let’s not forget that he is 6 1/2 months old now. 
Now to what you really want to know….his pulse ox was 84%.  We will take that!  So we are following the original plan and now going back in 2 wks. for another sedated Echo.  This is also good because Dr. Rome is on vaca until Nov. 3.  We want him to be the doctor in the Cath lab putting the stents in, when it’s time.
We did discuss getting a pulse oximeter for home, and she thought it was a good idea.  She gave us a script for one.  The only problems is that with our insurance all home type medical equipment is through out of network.  This gives us a $1,000 deductable.  We’re thinking we are better off buying one.  That’s not cheap either, but could be in the long run.  We’ll see.
We also discussed Riley’s reflux issues.  Tomorrow he is going to have a milk scan done.  This is to check the severity of Riley’s refux and to check for aspiration.  Dr. Szwast was thinking it may be a good a idea to go ahead and do the G-Tube and Nissan procedure, along with the Ladds procedure.  Reason being that Dr. Spray can’t do anything, surgically, to Riley’s heart until the situation with his veins is under control.  Riley was originally suppose to have the Ladds after his Stage 2, but we don’t know, now, when or if that will happen.  With his vomiting issues, and weight issues….the G-Tube and Nissan are becoming more and more likely.  Thought being if we need to do any of it….do it all at the same time.
So…again…we will see.  A test tomorrow…An Echo in 2 wks.   
I’m still waiting to hear back from the insurance company about the synagis.  Dr. Szwast also thinks that maybe Riley should see a pediatrician at home, rather then a Family Care doctor.  She said this was the first time she ever even heard of an issue with the shot, because most of her patients go to pediatrician’s, and they would carry the shot.  There were a few other reasons she mentioned, but their not important. 
So…I found a CHOP pediatrician, but he is in Mt. Laurel, and thats a little distance for us.  I’d rather have our doctors closer to home.  I also don’t want to just pick a doctor out of the yellow pages.  If Riley is going to leave one doctor for another I want that doctor to know his stuff.  If anyone knows an AWESOME pediatrician let me know. 
Well…thats pretty much all for now.  U’ll know more when I know more….

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