Nothing but Thankful...

As a parent, to say that you are nervous when your child has a medical procedure is a gross understatement!  The worry, stress, fear and emotion that goes into those kind of days are exhausting and unparalleled to most strenuous tasks.  When your heart is so involved, every sense is peaked and working overtime.  That was the days we have had this week...

Noah went into the hospital at 6:00am on Tuesday, May 23, 2017 and was finally taken back to do an embolization procedure on his nasal tumor (JNA) at 11:00am.  This embolization would help the doctors remove the tumor the next day.  The embolization was finally finished by about 4:45pm. Thankfully, they were able to embolize about 80% of the tumor which would help keep the bleeding to a minimum during the tumor removal.  Noah was sedated and kept on a ventilator and brought to the PICU (Pediatric Intensive Care Unit) for the evening.  He would have to lie completely flat for about 4 hours to allow the wound site at the artery to heal completely, then he would gradually be raised up in the bed.  I have to admit there is just no words for seeing your chid hooked up to a machine like that.  I have had children in the hospital numerous times, but the shock of seeing my son unconscious hooked to a breathing was rough.  We were very thankful for sweet prayers offered up at that moment.

After a long night monitoring Noah and making sure if he did wake he did not fight the intubation tube, Noah was prepped for the second phase of surgery on Wednesday, May 24, 2017.  They finally come to take him to the OR at about 11:00am.  Once more we kissed our boy goodbye and gave him our love.  Prayers were made over Noah and for the doctors and we left our boy at the door of the OR once more.  This day the hours seemed to go slower. Maybe I was tired, but I seemed to worry more over this surgery.  So many things could go wrong!  Bleeding was the biggest fear, but being so close to the brain is concerning no matter what the surgery!

Finally, at about 5:00pm we were called to talk to the doctor.  Noah had come through with flying colors.  The bleeding was minimal and they were able to get ALL of the tumor!  He would go for an MRI the next day to check the wound site and give the doctors a baseline for future scans.  Noah will be required to have a third procedure in 2-3 weeks to clean the removal site - but that will be as an outpatient.  Again, there are just not words to describe the relief and thankfulness that we felt in that moment. Our friends and family and even strangers had been praying for our precious son.  The family of God had petitioned the Father on our behalf.  As one precious text said, it is wonderful when "His will lines up with our own".  That is exactly what happened.

God had done it again.  He showed up and showed off just because He could.  What a Great Savior!

Noah finally woke up back in the PICU room.  He became fully awake and when I began to tell him about the plum sized tumor they had removed from his face, he said "the doctor is going to take that out tomorrow right?"  I laughed and said "No, bud, she already did that today.  The surgeries are over".  He looked at me incredulously.  He couldn't believe it was all over.  He had lost a day and could not remember anything about Tuesday other than arriving at the hospital.  I am actually thankful that he did not remember the struggle of his poor body when he awoke a few times hooked to the ventilator.  Blessed mercy.

All day today was spent making sure Noah was comfortable in bed and not in any pain.  Slowly but surely, he had all IV fluids and oxygen removed from him.  He is still numb on the right side of his face between his mouth and his eye.  The doctor is hopeful that the feeling will return to that area - most if not all.  They seem to feel that the nerves surrounding that area will make up for any damage done during surgery.  He may have a spot of numbness forever, but most feeling should return after time.  Noah's face is quite swollen still, but that too will subside - quicker than the numbness.  The future looks amazing for our sweet loving boy!  The doctor even said "he can resume his modeling career" as there are no outward signs on his face. haha

Noah was taken for an MRI at about 3:00pm today and his surgeon came to visit and read the results. As expected, all looked fantastic!  We will stay in the hospital one more night to learn how to irrigate the wound for Noah and if all goes well through the night he will be released to go home to his own bed tomorrow morning.  That is all Noah wants right now.  He tires very easily and does not have much of an appetite yet but he is doing so well.  We are more thankful than we can say for those who have prayed, texted, emailed, called and encouraged our family along the way.  We are grateful for those who have cried with us and rejoiced with us as God has shown up as only He can.  Again, our God has shown to have no parallel. His ways are so above our ways and our family will be ever thankful for the awesome blessings of our Lord.  

God's Got This!

For about the last 6 months, my middle, 13 year old son, Noah, has struggled to breathe through his nose and had begun snoring very loudly.  Having had his tonsils and adenoids removed several years ago, we wondered what could now be causing the new issues.  After seeing Noah's pediatrician and having a couple months of  prescribed steroids and antihistamines we did not see any real results.  Finally, the pediatrician referred Noah to an ENT doctor at the Cincinnati Children's hospital.  

Truth be told, we fully expected to find a polyp in the nasal passages causing the blockage.  Knowing that Noah has the FAP gene that my husband carries, we knew nasal polyps could be a possibility.  On March 1, 2017,  while at the hospital, the ENT tried to do a scope of Noah's sinuses, but the right passage was completely blocked off.  Even in the monitors, Andy and i could see nothing but white as the camera tried to scope the area.  Finally, the ENT sent us for a CT scan with dye contrast to see what was going on.  We were able to have that test done the same day at the hospital.  

We had only arrived home from the hospital for a matter of an hour or so when the ENT called to tell us that it was not a polyp in the nose or remnants of adenoid tissue as she suspected.  Noah had a tumor in his sinus.  A Juvenile Nasopharyngeal Angiofibroma (JNA).  This is a very vascular tumor that is found only in males and usually presents itself during puberty.  The doctor assured me that the "mass" is always benign, but can cause issues by growing large and breaking through the sinus cavity and/or eroding the bone in that area.  Surgery would definitely be needed as would an MRI and interventional radiology to embolus the vessels that feed the tumor. 

To say we were shocked would be an understatement ... but God knew and cared!

March 3, 2017, Noah's 13th birthday, we went for an MRI of his nasal passages.  What a way to start the teen years!

Fast forward a few weeks and here we are ready to head to the hospital in the morning for surgery.  Noah has lost all sense of smell and taste as his nasal passage has been blocked by the tumor.  The snoring has increased terribly and he does not sleep well.  He cannot taste anything anymore and at times feels pressure in his right ear like it needs to "Pop".   

Noah is ready for this surgery!  When you ask him is he is nervous, he says "not really" with a shrug and a chuckle.  He is just ready to have it over with so that he can get on with a great summer and be able to taste food again.  My fun, loving, jokester, easy-going man is just ready to be "normal" again - whatever that means.  ha!

Tomorrow morning, May 23, 2017, the radiologist with spend 6+ hours emobilizing Noah's tumor to cut off the direct blood supply so that it can be removed more easily.  Due to the vascular nature of the tumor, there could be HUGE amounts of blood loss if this is not first carried out. They will do this process through stints/shunts in is artery - going through the leg all the way up through the neck.   The will inject dye to make sure none of those blood vessels feed the eyes or the brain, etc.  Once they isolate the vessels to the tumor itself, they will fill them with mircoparticals to "clog" them up to prevent bleeding during surgery.  Such a delicate and tedious process.  Noah will be required to lie flat for 4-6 hours after the embolization and will remain in ICU and intubated through the night.  On Wednesday, May 24, 2017, Noah will then have surgery to remove the entire tumor (Lord willing).  This has all been planned to happen laparoscopically and will require another 4-5+ hours of surgery time.  

To say this has been a bit overwhelming would be "putting it mildly" but as always, we have been reminded of the one constant in our lives - the grace of the Almighty.  We still serve the same loving, merciful Father that has always been with us.  He is still sovereign and knows what He is doing - whether or not we understand the circumstances.  Our family has been amazing and supportive and our sweet church folks have been precious and caring.  God put us in the midst of the right people at the right time for the painful circumstances we could never have foreseen   At those moments when the "what ifs" surround this mama's heart and his daddy would beg to trade places with his sweet son - God's grace surrounds.  We are every thankful for the sweet, tender, AMAZING grace of our Saviour and the prayers of His saints.

God's got this - Casting all your care upon Him; for He careth for you. - I Peter 5:7

What a wonderful, liberating and precious thought!