Wednesday, January 27, 2010

MRI schedule

Well...I am a little disappointed. The MRI isn't until February 18th...three weeks from tomorrow!!! I'm ready for it to be over and done and am very frustrated!!! BUT! I'm trying to remember that it's not my timeline that matters. If there is a cancellation between now and then that we get enough notice on we will do it. It is highly unlikely due to the fact that we live almost three hours away and he has to stop solids/milk at midnight and clear liquids at least two hours before the preliminary check in...which is usually 1 1/2 hours before the MRI. So...on February 18th, we stop solidsand milk at midnight, clears at 8:30, check in at 10:30, MRI at noon and hopefully get some much needed answers and get to come home that evening...

Sedated Echo's over...the echo at least. We drove to Houston yesterday with a starving Ethan for his echo. He did really well with the sedation this time so we are relieved at that point. The type of Echo his cardio wanted required an IV that we tried for but were never able to get. His PA band is open but has low pressure going through it so there is an obstruction farther "down the line" as Dr. Altman puts it. The major suspect is his pulmonary artery that goes to his right lung. If you have been keeping up with Ethan you know that his first surgery required the surgeon to disconnect the pulmonary artery from his right lung, untangle it and his common pulmonary vein, and then reconnect the lung to the artery. The suspected diagnosis at this point is scar tissue buildup that is lowering the amount of flow to his right lung. Which would cause his symptoms of short breath during activity and being generally a darker blue than his normal is. Our next step is an MRI as soon as they can schedule it. If the MRI confirms scar tissue in the pulmonary artery, we will be sent to the cath lab to have that artery ballooned open at the scar. As scared as I am for this, I'll take it over open heart surgery any day. Please continue to keep us in your prayers as the stress is taking it's toll on everyone. Ethan did really well yesterday and we know that he will continue to amaze us all!

Wednesday, January 13, 2010


First and foremost I would like to say that we have had some wonderful news with little bean...the nuchal cord was nice and thin and things look perfect with him/her (we're still thinking her btw...).

Now on to Ethan. We arrived for his echo and waiting for a few minutes and were taken back. He hated every minute of it. The tech was a newbie and couldn't get good shots of his pulmonary vein return or his Glenn, so he called in his supervisor. He couldn't get a good shot either because by that time Ethan had had enough. We got him calmed back down and went across the hall to cardiology to see Dr. Altman. Mom took him for his x-ray because I can't while pregnant...his lungs look fabulous. His echo was pointless because the stuff we monitor was thrown out because Ethan was upset and wiggly. Ethan has been panting while active and sweaty after light activity, so that concerns his cardiologist and me. It would seem that his PA band may be too tight and messing with his lungs. So we are back to Houston on Jan 26th for a sedated echo to check his band (regulates blood flow to his lungs) and his vein return. If something is going on with either of these we will most likely end up in the cath lab the next day. We once again need your prayers for our sweet boy. We don't want to go to the cath lab!!! They also did a blood count and think that even though his red blood count is adequate, the cells are large so we need some iron supplementation. Also, a part of his white count was up (can't remember the technical name) that may indicate an allergy. So our instructions for the next two weeks:

1. Keep a daily journal of his 02 sats (twice daily and after activity if panting)
2. Iron supplement to see if that will help his body carry oxygen more efficiently
3. Get to an allergist for testing to see if he has an allergy that would cause him slight breathing distress.
4. Not freak out

1-3 are under control...
4 comes and goes...

We are putting our faith in our Father in Heaven. We have been through this and Know that He has everything under control. Ethan is going to be on this Earth exactly as long as he is supposed to...

Sunday, January 3, 2010

Testing Moved

Tesing has been moved to January 11th in Houston with Dr. Kirshon. Feels a little repetitive going to him again but we hope that he will give us good news this time! Ethan continues to thrive and other than being sick for most of Christmas break he is well! He is turning a little bluer around the mouth than I'd like when he is up walking around and it takes him a little longer to get over it so I'll be bringing that up when he has his Echo and Cardiology appointment on, you guessed it, January 11th. We have a full day of appointments...Kirshon at 10, Echo at 12:15, Chest x-rays, ekg and Dr. Altman at 1:30. Craziness!!!

Other news that is blogworthy is Nolan. He went to see a team of DAN (Defeat Autism Now) Dr's in Austin and is improving daily. His speech has blossomed, his social skills are coming closer to a two year old instead of a one year old (he's 3 1/2), and his personality is blooming! All with taking Gluten out of his diet. He showed an intolerance for wheat in his allergy testing last year so I'm hoping that this is the kingpin to getting his little body figured out. He has started a multivitamin from DAN, and will add calcium/magnesium, fish oil, and vitamin c supplements over then next few weeks.