We hope this update finds you and your family well. Here's a not so short update on Sara's health:
Sara will be having a heart catheterization on Thursday, January 13th at Long Beach Memorial Hospital. Sara will be put under general anesthesia for this procedure. She has had this procedure done several times before ( 3x prior to her heart surgeries to give the surgeon an assessment of her heart and once a few years after the Glenn to coil some blood vessels that were causing Sara's o2 sats to dip) and usually she is able to go home the same day. Only once, has she had to stay the night in the hospital after a heart cath.
After Sara's surgery in August, she seemed to be recovering well, but the last few months Sara hasn't been feeling quite up to par. The first thing we noticed is that Sara's abdomen suddenly got huge. She has been in obvious discomfort because of this. Her energy level has also been low and close friends and family have noticed that her personality had changed- Not wanting to socialize with them and not a happy girl. Her cardiologist has done all the tests he can on Sara and still we don't have an answer as to why Sara's abdomen is bloated and why she isn't feeling great four months after her Fontan surgery which has given her an increase in oxygen saturation (from 80's to now the 90's). The only test that came back as abnormal was a blood test that measures a hormone called BNP. Sara's BNP level was off the chart high! Sara also has been waking up 3-6 times a night for these past months. She mainly wakes up to use the bathroom and wants help to do this. We think that because of the discomfort in her abdomen it makes climbing onto the toilet too uncomfortable so she has to be lifted on. She is also on diuretics which increases her urine output.
On an up note, Sara has seemed more herself the past few weeks. She's been enjoying preschool and wanting to do more socially, but the other problems still persist. So, the only thing left to do is to go in and get a good look at what is going on via the catheterization. The cardiologist is concerned that her tricuspid valve, which was repaired during her last surgery (If you recall, the surgeon damaged the nerve while he was repairing it and that was what caused her to require the pacemaker) was not sufficiently repaired. If that is the case, Sara will have to have another open heart surgery to repair this. We are hoping that it is not the valve. Worst case scenario is that she needs an artificial valve which would mean surgery, and blood thinners for life along with regular blood draws. Some type of repairs are possible via catheter, so we'll just have to wait and see what he finds.
We haven't told Sara she's going in the hospital yet. She was so traumatized by the hospital stay for her surgery and the blood draws and tests she's had to do since then that we probably won't tell her until the night before or day of. We're also worried b/c normally they do procedures first thing in the morning b/c she has to be fasting. Unfortunately, the procedure Thursday is scheduled to start at 1:00 PM ( I think we have to be there at 11 AM) so Sara will have to be without food from 4am on and w/o water from 6 am on. I'm not happy about the scheduled time, but her cardiologist is covering for other doctors in the mornings for 3 weeks, so we weren't left with any other options.
We would appreciate your prayers for Sara and the doctors and nurses attending her that day- that she will be able to fast without too much discomfort, that she will be as cooperative as possible that morning before the procedure, and that everything will go well during and after the heart cath and that she will be able to return home that night. We're hoping and praying for the best!
Thanks for your support.
Melinda & Steve
WHAT IS A HEART CATHETERIZATION? Cardiac catheterization (also called heart catheterization) is a diagnostic and occasionally therapeutic procedure that allows a comprehensive examination of the heart and surrounding blood vessels. It enables the physician to take angiograms, record blood flow, calculate cardiac output and vascular resistance, perform an endomyocardial biopsy, and evaluate the heart's electrical activity and to visualize the direction of blood flow. Cardiac catheterization is performed by inserting one or more catheters (thin flexible tubes) through a peripheral blood vessel in the arm (antecubital artery or vein) or leg (femoral artery or vein) under x-ray guidance.
Posted Jan 14, 2011 9:34pm
by Joanna kokx
On behalf of Sara's classmate Kate and her whole family, we are praying for Sara and your whole family. May God bless you all with his healing hand. The Kokx Family
Posted Jan 13, 2011 1:05pm
by Judith Matsen
My darling Melinda: You know that my thoughts and prayers are with you and Sara today. May the Lord guide the doctors. Much love. Aunt Judi.
Posted Jan 13, 2011 12:08am
by Vaughn Nordes
Dear Melinda & Steve, Please know that my prayers are added to yours for beautiful Sara. I love you all.
Posted Jan 11, 2011 6:15pm
by kendrea rivera
we will have her in our prayers for sure. hope it all goes well
Posted Jan 11, 2011 3:59pm
by Nancy Larson
Melinda and Steve, I'm so sorry sweet little Sara has to go through this. What an amazing courageous family you are! I know the Lord will be watching over all of you! You will be in our prayers for continued strength, comfort and a great outcome! I'm going to the temple tomorrow and will put your family on the prayer roll. Thank you for keeping us posted. We love you!!! Nancy and Steele
Posted Jan 11, 2011 3:01am
by Mesia Kempton
oh melinda...wow! what a journey! we will keep her in our prayers. we pray all will go well. my mom, i think, has a bovine heart valve. her surgery was done at UCLA with dr. lac (i cannot remember how to spell his name). he is a great doctor, if you have to go in that direction. her local cardiologist who has been in our family for quite sometime now (since the death of my brother in 1995 from a heart anurism) is Dr. Thomas at Mission Hospital. He is also excellent. we love you all! Mesia