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Reed's Story - Doernbecher Children's Hospital

Reed's Story

My son Reed Michael Chandler was born May 27,1997 in La Grande.He was full term and weighed 9 lbs.Everything seemed fine,until the nurse heard a heart murmur and a pediatrician determined he needed immediate care.Reed was life-flighted to Doernbecher where it was found that he had Aortic Stenosis,and needed surgery to open up his aortic valve.The night before he was supposed to have the surgery,Dr. Grant Burch heard about Reed's case and offered a simpler procedure he could do in the catheder lab,in which he would pop the valve open with a tiny balloon inserted through a tube going from an incision in Reed's thigh and up into his heart.Reed did well,and we were able to take our newborn home after 5 days in the NICU.

Reed had a few more of those procedures over the next few years,but finally needed open heart surgery to replace the defective valve in 2002(almost 5 yrs old).Dr. Ross Ungerlieder performed his Ross Procedure,replacing Reed's aortic valve with his own pulminary valve and replacing the pulminary valve with a donor valve from an older child.Reed was only in the ICU for 2 days,and a regular room for 2 more days,before he was released.There have been more cathederizations,but only exploratory,in which a tiny camera is run up the tube into the heart.

In October 2009,he fainted and ended up at Doernbecher for a few days.It turned out that he was having episodes of arrhythmia,probably increased by his ADHD meds.He was taken off of those meds and sent home with a small monitor inserted under his skin for a couple months.Reed did fine until this January(2012) when one of his teachers called saying he was very pale,weak,dizzy,and having a hard time breathing.My husband took him to the ER where they medicated him to slow down his heart rate of over 200 bpm.Reed was life-flighted to Doernbecher where they checked for blood clots and then treated the tachycardia by "shocking" his heart back into a more normal rate/rhythm.He was also started on Atenolol to keep the heart rate down and aspirin to thin the blood.Then in March, Reed had an echo cardiogram,stress exercise test,and cardiac MRI.Because of those test results,Dr. Burch has planned to do an Exploratory Catheder in May,and then Reed will probably have open heart surgery in!
June to replace his leaking mitral valve(behind the aortic valve) with a mechanical valve.

Our family really appreciates the staff at Doernbecher and all they do for children.We love that we can stay in the room with Reed,and that the nurses try to make the stay as comfortable as possible for patient and family.We are very thankful for Doernbecher Children's Hospital,and for the way God works through the staff to help heal our child!God gave me a promise in a Bible verse when Reed was 1 year old - "A bruised REED I will not break..." Matthew 12:20.

 

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Comments (7)

Michelle(Reed's mom)

ANOTHER UPDATE Oct 2012: Reed's surgery was cancelled in June because of too much heart damage found during Cardiac Catheter.He started on new meds over the summer to reduce damage,and possibly needed a transplant.Another Cardiac Catheter in Sept showed valve leaking less,damaged areas pumping better,and pressures down 40%.No transplant or surgery on valve at this time!Praise God!Still no solution to electrical problems(Atrial Fib and Tachycardia),but other meds he's taking seem to be keeping heart rate under control for now.Continuing all meds,checkup in Dec,and another Catheter in the Spring.

Posted Oct 4 2012 02:23:50:403PM

Michelle(Reed's mom)

THINGS HAVE CHANGED: Reed's Cardiac Catheder on Mon 6/11 showed more hardened/damaged areas of hear muscle.Doctors decided open heart surgery is much too risky at this time.Instead,they started him on new meds to hopefully relax/soften those areas over the next few mths.If the meds don't work he ultimately could be in need of a heart transplant.While this news has shocked and frustrated us,we are thankful for the wisdom of the Cardiac Team and God's protection over Reed.Just keep praying please!!! :)

Posted Jun 13 2012 08:34:41:000PM

Michelle(Reed's mom)

Update 6/8/12 - Reed is just a few days away from his procedure and open heart surgery.He is ready to not be so weak,tired,and out of breath,but he is of course getting very nervous.Everyone's prayers are much appreciated!!!We find comfort in God's presence,and the knowledge and caring of the doctors and nurses at Doernbecher.

Posted Jun 8 2012 03:19:41:000AM

Michelle(Reed's mom)

Update: Reed will have an exploratory procedure June 11th and open heart surgery Jun13th.If all goes well,he will have his mitral valve repaired rather than replaced with a mechanical valve.Keep him in your prayers.

Posted Apr 26 2012 08:17:00:000PM

angie w

I have the honors of knowing this young man most of his life. He is a fighter, and a real go getter. I have known him most of his life (since he was about 3). Thanks to Dorenbechers for the awesome care you have given my friend. Michelle, you and Jerry are great. Always here for you!

Posted Apr 9 2012 05:28:00:000AM

Dianne

A very nice story, and what a wonderful young man Reed has become. Thanks to the doctors at Doernbecher for helping Reed reach his potential.

Posted Mar 27 2012 07:30:00:000PM

Mended Little Hearts of Greater Portland

Thank you for sharing Reed's story!

Hope his cath and surgery go well and he is recovered in no time.

Heart Hugs

Posted Mar 27 2012 05:11:00:000AM