Sept 19, CT Scan results

Sierra had a clinic appointment this morning. Some 'tune-up' items they are addressing.  The notes below is just our way of documenting where she is at. We are not trying to scare or overwhelm anyone.  And yes, I wish there were no 'tune-up' items to address, but this is the reality of it.
1) She has mild leaking in one of the heart valves, caused by 6 years of biopsy procedures.  Nothing can be done now, it's just something they need to watch.  It would have to get a lot worse before they would need to repair it surgically.  
2) Still has active anti-body rejection going on.  The IVIG treats against this rejection, but if it continues, they have the option of going to stronger IV treatments.
3)  She has slightly increased pressures in her heart.  In the past she has had increased pressures when she has had rejection.
4)  The puffiness in her face is still attributable to the predisone she takes to fight the rejection.
5)  Confirmed her coronary arteries look good.  Meaning the arteries have improved from last year and no significant signs of coronary artery disease exists. That is GREAT!
6)  In 2 weeks they will repeat the biopsy and see where her rejection level is at.
7)  Even with all this she has NO restrictions on physical activities (except football, Henry Shaw style ufc fighting, and hockey).  Her heart is beating 'normally'.

1:30 pm. Lindsey just had her CT scan done.  They are looking closely at where the canulas go into her heart. Hopefully this will give an explanation for the pvc's and pump alarms. I still have an yucky pit in my stomach and hope they can manage this without surgery.

With the med adjustments lately she has had to get daily blood draws.  Stacy and I have been here long enough to know what the blood draws are for and we are lobbying very hard to limit the blood draws.  Before the next draw I want the doctor himself to come in and explain why. Her poor arms are heavily bruised and it took 5 pokes to find a vein for one blood test.   If the daily draws continue they will probably need to do a picc line, as much as we don't want it (because of the risk of infection and fevers).

9:00 pm.  Lobbying paid off. No blood draws until friday. Lindsey appreciated that.  Dr. Yeh came in and reviewed the results of the CT scan. The CT scan shows nothing wrong with the canulas, the Berlin pump is operating perfectly inside her heart.  That is good news in one aspect, they do not need to repair the canulas surgically.  However, this does narrow down the cause of the pvc's and pump alarms. The right side of her heart (RV) is continuing to fail.  Remember the right side is not supported by the Berlin.  As the RV (right ventricle) continues to weaken and enlarge, it pushes over into the left side causing the VAD to not fill properly, the pvc's, and the pump alarms. So tonight for the first time since before the Berlin was put in they started enalipril, an oral heart failure medicine.  This is the same med Gage is on.  They want to treat the RV failure with everything they can, the very last resort would be a 2nd Berlin. 

So for now we carry on. Stacy starts volunteering at Hunters school tomorrow for 1 hour. Hunter is very excited. Nothing changes for Lindsey, school, walks, eating, play room, PT, and meds. Stacy and I continue with work, kids, sports, volleyball, homework, Dr appointments, and maybe a little deer camp.  We haven't forgotten our prayers. I still believe and have faith that God hears and answers our prayers.  We are truly blessed at this time to all be together with Lindsey in a great hospital.

Lindsey has been sitting here with me.  It's her turn to write.
 And I am still wating for a haert.Iam filling beter and I am TIRED OF GETING POKES Mrs.simth would like to skyp with me. Hi every everybody I miss you alote.I have a good techer. My favrite game is to play Plants VS ZOMBIE,S and I like my dad sleping here. Wish I could go to deer camp.  My dad said I nead to go to bed  Love you. Lindsey Lou.   

Beauty and the Beast on their way to the CT Scan