Sean’s Journey ~  UPDATE ~ March 7, 2019

It has been way too long since I updated all of you and I apologize sincerely for that.  As we enter our 6th month here (crying) , things are changing so so fast even the doctor's rounding, which is twice per day, cant get caught up in a 12 hour period.  Most of the issues are that Sean is so complicated, has some rare issues, has so many different specialties involved that they cant communicate amongst themselves as fast as things change with him.  One test result from this morning could change everything for the PM shift.  I am actually most times the first person to inform particular doctors.  Ugh.  Early Last week an amazing Interventionalist and Cardio Cath specialist as well as several other team players had Sean in the OR to attempt to investigate a few issues and embolize the Lymphatic leak. One; his high pressures, two; his Chylothorax leak, three; fluid retention.  After quite some time trying to get in again, (his groin has so much scar tissue to get through and his veins are shot), the surgeon called and told us they found some sort of blockage and would continue and keep us posted.  A couple hours later they had found his SVC was completely blocked with a massive blood clot.  The decision was made to stent the SVC to open it up.  The Superior Vena Cava returns deoxygenated blood to the right atrium of the heart, drains blood from the head and neck, arms, and upper chest. This is a very dangerous situation.  How and when did this happen we don't know.  After 8 hours of surgery they successfully placed a very large stent in the SVC and relieved the pressure and blood flow.  Once again, abandoning the Leak, this time in hopes of clearing pressures would cause the leak to stop.  Sean's recovery was slow.  He took a few steps backwards.  They continued to monitor and measure the drainage from his chest tubes hoping that they would come to a complete stop.  After a few days they noticed the drainage had actually not stopped.  Time to have another Team meeting.  Meanwhile, the Kidney's sleep.  Please wake up!  His new heart beats beautifully, it is strong, it is happy. Thank you God and our Angel Donor and family.   As the next few days went on Sean's blood pressure would drop.  His Hemoglobin was extremely low so he needed transfusions.  I have PTSD when it comes to this because prior to transplant the anti-bodies were so great a transfusion was never an option (more to come on this, stay tuned).  A couple days later Sean had some new energy.  He was able to get up into a chair and even walk for a short period.  He then developed an incredible amount of swelling in his feet and over the next few days both legs from his feet to his knees had so much edema he can't stand.  His X-rays show fluid In the right lung as well.  He has become very lethargic.  He cant talk at times.  There are times we are talking and he just closes his eyes and he's asleep.  He has lost so much weight there is literally nothing to him.  His tall body has become lanky, he's pale and he's not my Sean.  My heart breaks daily watching this guy fight, fight, fight with little to pull from.  As of today, Sean's Cardio Thoracic surgeon requested the help of the only doctor in the state that can successfully perform a procedure tomorrow to find all the areas of the Chylothorax leakage, the thoracic duct blockage and embolize them.  He's draining so much fluid still that dialysis is having to be put off on some days.  We are praying that this team of doctor's can get in there, find their way to all the areas/holes/tears causing leakage and plug them up or ballon them.  We met with this surgeon this afternoon.  He said its a rare situation, extremely time consuming and very difficult at best.  One of the hardest procedures to do, thus not many surgeons specialize in this.  A cardio specialist will be in there to assist like last time with an entire team of doctors and nurses to facilitate the procedure.  It has been three weeks since Sean's heart transplant and we really want to move forward with his new life.

Please say a special prayer for Sean and all the team tomorrow for success!

Thank you as always for your prayers, love and support 
~Kim~

#seanstrong #seanstrong♥️♥️ Fight With Heart
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