Monday, August 30, 2010

June 6

Hello Everyone!

Just wanted to send you a quick update.

Sophia's adenoids are not enlarged - a blessing - so I don't know whether or not the pulmonologist will still want her to have her tonsils and adenoids removed, but I assume that he will not order a sleep study to check for apnea.  Praise God for that!

However, more sobering is that the CT scan does show a narrowing of her main bronch.   In other words, the implant is not continuing to provide adequate structural support in her chest cavity, so there is shifting inside of other organs (probably heart and lung - the nurse couldn't tell me) which is causing her floppy airway to be twisted, causing her breathing to be impeded, and the airway to collapse more intensely.  It will have to be addressed.  The pulmonologist's office called me and said they would be faxing the info to the surgeon and calling the cardio-thoracic surgeon's office.  Within 10 minutes I received a call from the surgeon's office saying that he was in the OR until late tonight, and had a few cases in the morning, but as soon as possible would review her case and call back to let us know what he plans to do and the time frame.

Here are my and Glenn's assumptions based on what we know and my conversation with the pulmonology nurse:

She does require surgery - but at this point the surgeon will have to decide if the implant he placed in her at 12 months has the capacity for more fluid.  And if so, will it be enough (we wonder) for her adult body?  If he has to completely replace the implant with another, which is obviously more risky, will it receive an amount of fluid that will continue to provide support into her adult years?  I don't know if they know.  I do remember the surgeon telling us immediately after her implant surgery that he had tried to put more fluid in the implant, but she had become unstable, so he pulled some back out until she was stable.  But that is all I know - I can only assume that they would put a small implant into a baby - and I know that breast implants come in different sizes (although my knowledge does not come from personal experience) - so I'm confident there are bigger sizes they could use.  We know that adding fluid to the existing implant - as long as it would work successfully in the long run, is the safest scenario.  So - alot of unanswered questions yet to be answered.  

But we are thankful for what God has given us so far.  So thankful and relieved that Sophia has a condition that can be addressed.  Thankful that He brought the issue to light by presenting symptoms for us to see.  Thankful she is older now than when the first implant was placed and she is also healthy!  When she received the current implant - she had an undetected bacterial infection in her lung that immediately blossomed into ARDS (which you can read about  

I read quite a bit online about post-pneumonectomy syndrome this morning - to refresh my memory, since that was the diagnosis which precipitated the implant surgery.  A pneumonectomy in itself is rare; in a child more rare.  Her original diagnosis of congenital lobar emphysema - which was the reason for the lung resection is also extremely rare - none of the staff had seen it in real life - only in textbooks.  Post-pneumonectomy syndrome is rare as well- since most patients who have a lung removed are adults - (due to carcinoma) and do not have "soft" insides.  I didn't read anything at all yet, (I'm still looking) about having the implant replaced due to problems.   So we have a rare, beautiful little sweet pea who the Lord has seen fit to bless us with - and who He has seen fit to bring glory to Himself in a rare way.  It's humbling to see Him work through her life in this way for His purposes.  We trust His Infinite Wisdom and Sovereignty in all of it!  What a loving, merciful, steadfast God He is!  We wait in faith to see His will accomplished through this new episode in her life - and our lives.  Also - we are incredibly thankful for you all - and for your faithful prayers on her behalf!  Thank you!!

We will update you as soon as the details about the surgery are made known to us.  

Hope you are all well!

Kelly for the Orr's

Olivia, Sophia, Isabella

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