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June 5, 2006:
Sean saw the cardiologist today.  His chest x-ray is clear with no fluid in his lungs.  He can stop taking all medication but aspirin.  The cardiologist will see him in a week.

May 15, 2006:
Sean saw the cardiologist today and his chest x-ray looked better.  There is less fluid in his lungs.  The cardiologist will see him again in 3 weeks.

May 4, 2006:
Sean saw the surgeon today.  His chest x-ray and echo looked  good.  There is still a little fluid in his lungs but it is less than when Sean was released from the hospital.  Some of Sean's medicines were reduced.  Sean is back to his active self and has even been climbing on the backyard playset.

April 27, 2006 (Thursday):
Sean is home!  His chest x-ray and echo show that everything looks good.  There is a little fluid left in his lungs but nothing abnormal or concerning.

April 26, 2006 (Wednesday):
Sean had the other two drain tubes removed today!  If his tests go well tomorrow, he will be released tomorrow.  Grammy, Grandpa, Aimee, and Cara came to visit Sean today.

April 25, 2006 (Tuesday):
Sean had the temporary pacer wires removed and one of the three drain tubes removed today!  Sean walked all the way down the hall to get to the wagon and he got out of the wagon to play in the playroom!

April 24, 2006 (Monday):
Grandpa visited Sean today.  Sean walked out to the hallway to get in the wagon to go to the hospital playroom and garden.  Sean made a new friend today.  His friend had the same heart surgery 4 days before him.

April 23, 2006 (Sunday):
Sean walked about 10 feet today.  He enjoyed his two wagon rides to the hospital garden.  They took the oxygen off for a few hours but Sean wasn't able to keep his oxygen saturations up while sleeping and the oxygen was put back on.

April 22, 2006 (Saturday):
Sean was moved out of the PICU by noon today!  Less than 24 hours after open heart surgery!  By 5:45 pm. Jim and Donel were taking Sean for a wagon ride around the hospital.

April 21, 2006 (Friday):
Sean had open heart surgery today.  Donel took him into the operating room at 8:30 this morning.  Surgery had started by 9:15 am.  The repair was done by noon and they were inserting Sean's pacemaker wires and performing an echo.  Sean was in the PICU by 2:00 pm.  Jim and Donel were able to see Sean in the PICU by 2:30 pm.  Sean was asking for milk by 3:30 pm. and asking to go home by 4:15 pm.

March 30, 2006:
Sean had a heart catheterization today.  His heart looks great!  They coiled several blood vessels that had formed between his aorta and pulmonary artery.  The surgeon has all the information that he needed to prepare for the surgery on April 21, 2006.

March 16, 2006:
We met with the surgeon.  He recommended that Sean have the Fontan operation this Spring.  This will leave Sean on a two chamber heart.  He will have passive blood flow to the lungs and his heart will pump blood to his body.  This procedure will redirect Sean's liver blood flow to the lungs.  The liver blood flow to the lungs should reduce the AVMs that are forming in his lungs.

December 5, 2005:
We have moved to St. Louis and established a relationship with a cardiologist here.  The cardiologist has presented Sean's case to the staff.  They recommend that Sean have his next surgery in the spring.  They recommend leaving Sean on a two chamber heart and just redirect his liver blood flow to the lungs.

July 5, 2005:
Sean had his heart catheterization today.  His heart looks great!  He is starting to form AVMs in the lungs.  The cardiologist recommends starting to plan for Sean's next surgery.  We need to move to St. Louis (a lower altitude should help Sean's oxygen level) and get the St. Louis cardiologist's opinion.

June 21, 2005:
Today's visit to the cardiologist did not go well.  Today's echo appears to show a junction in Sean's heart is closing which could be causing Sean's low oxygen level which is still about 80%.  They want to do a heart catheterization.

May4, 2005:
Sean is being weaned off the oxygen.  His oxygen level is upper 70's to low 80s today when he visited the cardiologist.  Today's echo still looks good.  Due to another cold that Sean has, the cardiologist wants to see him in 6 weeks to recheck his oxygen levels.  The 6 weeks give him time to heal from the cold and adjust off of the oxygen.  If his oxygen level is still low then, they will want to do a heart catheterization.

April 13, 2005:
Sean appears to be having some complications.  A week ago, Donel took him to the pediatrician due to a cold and some blueness in his hands.  His oxygen saturation was down to 75%.  After consulting with the cardiologist, Sean was put on oxygen.  He has been to the pediatrician 2 more times and the cardiologist today.  Today's echo looked good.  Sean's heart is good but the small blood flow through the closed pulmonary artery (after the last operation) appears to have stopped.  This is not a problem since that was why it was closed to being with.  However, that was allowing a small amount of liver blood to go to the lungs.  They are going to leave Sean on oxygen for 2-3 weeks and re-check his oxygen level.  If the oxygen level is still low at that time, they will do a heart catheterization and check to see if AVMs are forming in his lungs and whether heart surgery is needed.

September 28, 2003 (Sunday):
Sean is home!  He was released from CNMC around noon.  He's acting like his old self - with the exception of not wanting to crawl on his stomach.  With his shirt on you'd never guess that he had open-heart surgery 5 days ago.  He'll be on the pain medicine for a few more days, but that's it -- no oxygen, aspirin or iron.  His oxygen saturation stabilized at around 90%.  We are very thankful and incredibly blessed!

September 27, 2003 (Saturday):
Sean's sisters came to visit for a while today.  They all had fun playing together.  His pacemaker wires were removed today also.  He doesn't have a pacemaker -- they were inserted during surgery and kept just in case there were any problems during the recovery.  Donel stayed with him last night and she'll be there again tonight.  It's looking pretty definite that he'll come home tomorrow.  We're getting comfortable with the idea since he seems to be almost completely back to normal.

September 26, 2003 (Friday):
Sean's chest tube was removed today and he was moved to the floor of the Heart-Kidney Unit (HKU) early this afternoon.  He's sitting up in a chair and playing with toys.  Amazing.  They expect to send him home on Sunday -- less than 5 days after the surgery (very scary).

September 25, 2003 (Thursday):
Sean was moved to the lower-level ICU today because he's been doing so well.  His atrial pressure monitoring tubes were removed and he continues to do great.  There have been absolutely no problems or complications.

September 24, 2003 (Wednesday):
Sean is still in the ICU.  His breathing tube was taken out at 6:00am.  All his lab results are looking great.  His oxygen saturations have come down a bit to around 90% but it's still very acceptable.  He was awake, alert and eating from a bottle this morning, but he 's still on pain medication (Tylenol, oxycodone & morphine) so he's been sleeping a lot.  He's getting great care from all the nurses -- they all say he's cute!

September 23, 2003 (Tuesday):
The day's events were delayed by the bad weather (long story) but we left Sean with the anesthesiologist at 11:55am.  The first incision was at 1:50pm, after attaching all the wires/tubes and doing another echocardiogram.  He went on the heart-lung machine from 2:55pm until 5:45pm and his heart was officially stopped for 23 minutes.  They brought Sean up to the ICU at 7:40pm and we had a chance to talk with the surgeon.  We got to see Sean at 8:00pm -- and he looked great!  If it wasn't for all the wires & tubes you wouldn't think there was anything wrong with him!

September 9, 2003 (Tuesday):
Sean's reconstructive open-heart surgery (a.k.a. the big surgery) is scheduled for 7:30am on September 23rd at Children's National Medical Center in DC.  The surgery is expected to take 8-10 hours followed by roughly one week in the ICU and another week in the cardiac wing.  See the Big Surgery page for more details.

August 7, 2003 (Thursday):
Sean has been having monthly checkups and he's been doing well on oxygen since April.  The logistics of everyday life are much more difficult with an infant attached to an oxygen container!  He saw the cardiologist today and she decided (from his last blood test results) that it's time to schedule the big surgery.

April 14, 2003 (Monday):
We heard back from the doctors.  The new plan is that Sean will stay home on oxygen for 2 to 4 months then they'll do the big surgery.  He'll have frequent doctor visits and tests during this time.  The goal is to let Sean grow enough to use a larger conduit in the big operation -- without
surgery for another shunt.  This would target a total of only 2 open heart procedures by age 7 -- better than the other options being discussed.  The journey continues...  :-)

April 11, 2003 (Friday):
The sedated echocardiogram was on Monday.  The heart catheterization was on Tuesday.  The MRI was on Wednesday.  All went very well and they got a lot of great pictures & data.  We were scheduled for the "big surgery" on Friday (today), but they came in Wednesday night and said it looked like they would have an opening Thursday morning -- but they weren't sure.  So we planned for the surgery Thursday morning (i.e., no food for Sean from 2am, etc).  By 7am they still weren't sure if they actually had the opening. At 7:30am, the surgeon & head nurse came in and said Sean was indeed going for the surgery at 8:30am and they'd be back shortly to take him down to the operating room.  At 8:45am they came back with about 8 other
cardiologists & nurses -- and said they were sending him home.

Needless to say we were a bit shocked.  They weren't joking.  Apparently, there are still some differing opinions about the best way to proceed and they convinced the surgeon that since Sean was stable on oxygen there was no compelling reason to perform the big surgery immediately.  The cardiologists are meeting today to discuss Sean's case and bring in some other outside opinions.  They'll call us this evening with the new plan.  The current options are:

1) Perform the big surgery as planned in the next week or two.  This open heart procedure would get his heart into the "final/corrected state", but would likely involve another open heart procedure in about 2 years to replace/enlarge the new conduit, then another when he was around 7 years old to do the same (total of 3 open heart surgeries by age 7).

2) Put in an additional shunt in the next week or two.  This closed heart procedure should buy some more time for Sean to grow before the big surgery with the hope of only having to do one additional open heart procedure (one closed heart surgery plus potentially only 2 open heart surgeries by age 7).

3) Keep him at home on oxygen for a few months.  This buys some more time for Sean to grow before the big surgery without any immediate surgery. This should keep him stable temporarily, but doesn't address any of the real problems.

For now, we're staying flexible and recovering from the emotional roller-coaster.  We'll keep everyone posted on the new plan when we know it.  Again, we greatly appreciate all the prayers!

April 5, 2003 (Saturday):
Sean's oxygen saturation level was still dropping as of this morning, so they admitted him to Children's Hospital.  They put him on oxygen and checked him out with another echocardiogram (and other tests).  The plan is to monitor him Sunday then on Monday they'll do another echocardiogram, an MRI and a heart catheterization.  What happens after that depends on the results of those procedures.
 
The good news (at least I think it's good news) is that they're only targeting this one pulmonary artery, so it looks like they won't be putting in another shunt or doing the "big surgery" at this point. They'll review the results of the echocardiogram /MRI/catheterization and will likely either do a balloon angioplasty during the catheterization or do a surgery to insert a stent into the artery (possibly also on Monday).

Sean still looks great (only mild blueness/cyanosis) and seems pretty happy -- except for when they poke & prod him :-).  Aimee & Cara (& the dog) are having fun with their grandparents and Donel & I continue to have a positive attitude about the situation.  Donel's staying with him in the hospital and I'll be staying at the Ronald McDonald House starting Sunday night.

April 3, 2003:
The cardiology appointment didn't quite go as planned this morning.  It appears that one of Sean's pulmonary arteries is closing and his blood-oxygen level is unacceptably low.  They're scheduling him for a heart catheterization tomorrow (but it may get pushed to Monday/Tuesday). If the catheterization confirms what they saw on the echo today, they'll have to either put in an additional shunt (to buy more time) or do the big reconstructive surgery very soon.

February 5, 2003:
Sean received a good report yesterday during his follow-up from surgery.  He's healing great and the surgery still appears to have been successful.  No additional follow-ups should be required.

Today's monthly check-up with the cardiologist also went well.  The latest thought is that they'll hold off on his heart catheterization for a while since he's doing so well, although it will surely occur during his first year.  They'll use the info from the catheterization to finalize the strategy for his major heart surgery which will likely occur when he's around 18 months old.

January 27, 2003:
Sean successfully underwent surgery on January 21, 2003.  The surgery consisted of a Ladd Procedure, an appendectomy and a circumcision.  He recovered in the hospital until January 27th and is now home and doing great.

December 7, 2002:
Sean is doing great now, but it was not an easy journey. The pregnancy was proceeding just like our first two until we went in for our routine sonogram in early July and were told that there were serious problems with his heart. This started a 4-month odyssey of medical research, doctor visits and emotional olympics.