01 Sep '04 - 896 W - + 18 - 6 The download...

So, here is the complete download...so that I don't take up so much room on the front page of the blog, click on "more" below to read the rest.

As Dan said, they are going to be putting in a feeding tube to Alex's stomach either tomorrow or Friday.  This will serve a couple of purposes.  Alex has the type of esophageal defect where his esophagus never really formed completely, and doesn't attach to his stomach.  This is usually paired with an opening between the esophagus and his trachea, but not in Alex's case.  There is good and bad associated with that.  The good news is that his stomach acids can't be aspirated (get into his lungs).  The bad news is that the gap between the esophagus pieces is pretty large, meaning that the ends can't be stretch enough to attach them right away.  The g-tube (feeding tube) will allow the docs to feed him directly to his stomach while they work on stretching the ends of his esophagus together, and will also allow them to perform a test to find out exactly how long the gap is.  After they give him the g-tube, they'll give him a few days to recuperate, then will try to find out more from there.  Because Alex will need to have a tube in his mouth to suction the pouch he currently has at the end of his mouth and top of the esophagus, the stretching process will most likely take place in the hospital and could take a few weeks or longer to do.  How fast they proceed probably depends on his heart condition...which I'll try to explain more of now.

We knew that Alex would have a condition called Tetralogy of Fallot (TOF) when he was born.  What we didn't know was the extent of the defect.  After talking to Dr. Siren (one of his cardiologists) today, we now know that Alex's main issue is one of the four defects that are a part of TOF.  (If you are curious about the defects specifically, see the web sites referenced to the left.)  His pulmonary artery is almost completely blocked where the blood would exit his heart.  This means that blood leaving his heart is almost unable to get to his lungs through that path.  In order to keep him stable for now, the docs are giving him prostagladins, a hormone that is present during pregnancy, which keeps his ductus arteriosis (PDA) open.  The PDA is an artery that is present in fetusus that allows blood to flow in a way that allows the fetus's blood to be oxygenated...it usually closes within a day or so of birth.  The meds will keep this vessel open until the docs can form another path for Alex's blood to flow to his lungs.  This is the surgery that Dan referred to in his last email.  Depending on how this first week goes, the pediatric cardiac surgeon (Dr. Meyers) will either put in a shunt to open his pulmonary artery, or they will perform the more complete corrective surgery.  In the first case, the shunt will be in place for about 6 to 9 months until Alex can grow enough to increase the probability of success of the corrective surgery.  In the second case, they would open up the pulmonary artery, and close the hole between his ventricle walls.  Which one they do will depend on what they see in an echocardiogram that they plan to do early next week.  The actual surgery would probably follow a couple of days later.

One more thing that they are doing is repeating some of the genetic testing.  They apparently haven't been able to get all of the results from Lancaster General, so they are repeating the test for DiGeorge's syndrome and are performing one addition test that they hadn't completed.  The docs at LG told us that the testing was negative for DiGeorge's, so I'm not expecting a different result there.  I'm not sure what the other testing is for, but we'll provide updates as they are available.

In general, though, Alex is doing pretty well so far.  None of the problems that he has are emergency situations, so the docs appear to be taking their time to make sure that the right decisions are made for him.  He'll probably be in the hospital for a while, but we knew that going into this.  All in all, the cardiologist said that he has an excellent chance of growing up pretty normally, and will most likely be allowed (and encouraged) to be an active child, especially with aerobic activity.  Certain activities may be limited, mainly those that are isometric in nature, like football and wrestling.  He said that the main issue that he could have long term would be an enlarged right ventricle, something that can be made worse by isometric sports and the like.  We're just happy, though, that his problems seem to be fixable.  The next year or so is going to be tough on all of us, but with all of the support we've been receiving, I think we'll all be just fine.

Just wanted to let you both know that lots and lots of people, and lots and lots of churches have Alexander in their thoughts and prayers. I have been getting emails and phone calls all day from concerned people. The Wileys stopped by just a few minutes ago and wanted to know all the details. We gave them the web site. It brought tears to Don Wiley’s eyes when I told him Alexanders full name.

Grampa Norton - 01 September '04 - 20:39

Kari and Dan you know whatever we can do Dad and I are here for you. Alot of friends and family here also are praying for our little Alex. What a wonderful gift to our families and friends.

Deb and Jack - 02 September '04 - 05:16

I just need to give a shout out to modern medicine…who knew someone would invent a drug that would keep the baby’s pre-natal blood vessels alive! Yay to all of the dorks in the world who never had a date to the prom!!!! Yay to us!!! :-)

Natasha - 02 September '04 - 08:17

My family and I will continue to pray for Alexander, you and the doctors. Thanks, Aunt Gloria for passing along the website to me. It has been wonderful to read. We are calling him “Baby Alex” at our house, since we have an “Alex” at our house….Alexandra. Thanks again for sharing. You are in our prayers. Love, Allison

Allison (Norton) Yates () - 02 September '04 - 09:42

Kari and Dan,
Baby Alex is in our thoughts and prayers. I am teary eyed reading about his hurdles but am thankful for modern medicine. We wish him all the best for his recovery and we pray for your strength to get through this. He is a blessing to this world and he is blessed to have you as parents.
Crissy, Uncle Rich, Scott, and Ricky

Uncle Rich and Crissy () - 02 September '04 - 10:59

Dear Dan & Kari,
We’ve been following the web blog gratefully; grateful to you for providing the detailed and wonderfully helpful updates; and grateful to whatever the great power or force is in life that turns people like you in such loving parents, willing to to do whatever is necessary to overcome anything that might continue to threaten Alex. We are so thankful for you and for the docs and the nurses and the medical genius of the world who have made these modern miracles possible, and for everyone else involved in helping precious Alex climb over these challenging but surmountable obstacles. Hang in there! We’re remembering you and standing along side of you every day, every step of the way.
Nelson and Sandie Murphy; Austin, Jenn, Meegan & Allison

Nelson, Sandie & kids () - 03 September '04 - 09:17

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