30

Apr

Sovereignty of God

Filed Under (Blogs) by Susan on 30-04-2009

Praise God for the way that He moves.  Philip did not have to “emergently” go to the ICU after his surgery yesterday.  The surgeon reported that he opened Philip’s flap and removed a portion of each side, leaving the center piece intact.  He observed that the airway had opened at least 50% more with this procedure.  If this is not successful in helping his breathing problems at night, then he will recommend removing the center piece as well, and essentially un-doing what was performed in August 2008. 

The key has been Philip’s recovery and how his oxygen levels remain while he is hospitalized.  His oxygen level has remained above 97% consistently while awake.  He does drop down to the 80% range when he sleeps, but he does not stay at that level, he quickly returns to the 90% plus range.  He will be under observation today and tonight in the hospital with the pulse oximetry and may be discharged from the hospital tomorrow.

Oh, and by the way, HE DID NOT WEAR THE CPAP AT ALL LAST NIGHT!!!!!  The night shift nurse, (Santhosh, heehee), reported that Philip did not have any respiratory stridor (the horrible strangling sound when he could not breathe without CPAP).  He was restful in his sleep, not at all like he was after his August surgery when the flap was created.  We expect that this will only improve as the swelling reduces in his throat.

God is great, isn’t He?  The thought ran through my mind, could this all have been avoided, if God had  guided the surgeon to make the flap in the way it is now?  Could anything have been done differently?

I don’t know the answers to the questions.  I mean, sure, God can intervene, can heal.  But He is God.  He reigns, like Lincoln Brewster’s song.  I will trust Him and His will, though I do not understand or see the big picture.  Please keep us in prayer, that we will all as a family continue to look to the Lord. 

Thank you so much for your prayers and love and support.  God bless each of you greatly!

Because every child matters!!!

Susan

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29

Apr

God you Reign

Filed Under (Blogs) by Susan on 29-04-2009

The date has finally come, April 29th, Philip is scheduled to have a nasopharyngeal partial flap revision/removal.  I guess we have mixed emotions about this surgery.  I’m trying very hard not to ask God, WHY?  At the same time, I am at peace, knowing God reigns!
 
My lovely sister-in-law (shout out to amamma) asked Philip a few weeks ago, “Philip, surgery is on April 29th, are you ready?”  Philip responded by slapping his forehead, “Oh, man. I wonder why God made me like this.  Why do I have to have so many surgeries?”  I’m not sure what her response was.  Philip asked me the same questions earlier yesterday.  I cried thinking, if I can’t even explain it to myself, how will I teach my little boy? 
 
I reminded Philip of Love Without Reason, and how our mission is to help the children born like him needing surgeries.  “In some way, we may be able to help others, since we know the way you have been helped by surgery, Philip.”  He did accept this explanation.  My worry has been that Philip would feel as if God failed him, by letting him go through so many surgeries.  My fears were allayed when I heard Philip say, “Don’t worry, Dad, I still love God, but I still wonder why He made me this way?”
 
We don’t always have the answers as to why things do happen the way that they do.  One thing I know is that God is with us.  More than that, He reigns.  He is victorious.  He is the Creator.  He is in control.  We have overcome the devil, by the blood of the Lamb , and by the word of our testimony… (Rev. 12:11).  

God bless you all.  Keep us in prayer, we arrive at the hospital at 9:45am, we are not sure what time they will take him to the operating room.  Will keep you posted by blog..

 
Love you all
Susan
ps  listen to Lincoln’s  song:
 
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11

Apr

O Lord you Never Let Go (Part II)

Filed Under (Blogs) by Susan on 11-04-2009

We met with Philip’s plastic surgeon to discuss treatment options to help Philip with his breathing and sleeping disturbances that have been ongoing since the August surgery where a nasopharyngeal flap was created to help Philip’s speech.  After reviewing everything the ENT doctor said and the rocky sleep patterns Philip continues to have, his least invasive, least risky surgical treatment is to partially revise the nasopharyngeal flap created last August. 
 
He reminded us that this may not be enough, however, to maximize on the improvement on  Philip’s speech and to help restore his breathing patterns as they were prior to this surgery, he recommends we begin here.  If this is not enough to restore his sleep, then we may go back and completely remove the flap.  
 
This was not an option I had recently considered.  I mean, all the worst case scenarios are the ones moms think of, I guess!  I was reminded of a passage from II Chronicles 20.  King Jehoshaphat is surrounded by different enemies from different countries.  He cries to the Lord, we don’t know what to do, but our eyes are on you!  This was something I could definitely identify with last week.  I had to make this decision, Santhosh was out of country.  I had Philip in my hands during that visit and all last week.  I didn’t know where to go, but I can honestly say, I cried to God and prayed for direction.  You alone, God are my hope and my guide.  Just like the song says, “Lord, you never let go of me.” 

Susan

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