The waiting game

There isn't much going on here.  Today was a quite day for Cole, not so much Ian and I.  I felt like there were people in and out all day.  GI did stop by and looked at Cole and felt his tummy and they said he looks and feels great.  We will get liver labs in the morning.  This will be the first time they are checking his liver since he was discharged from the hospital at birth.  We still have no idea what they are thinking as far as surgery.  At this point it sounds like they just want to monitor his oxygen levels over night and if they stay high enough send him home until his surgery date and if not possibly do surgery tomorrow. 

Kleinfelter's Syndrome

Cole's newborn genetic screen came back and it showed that he has something called Kleinfelter's Syndrome.  This really dosen't mean much at all nor does it change the course of action with his heart.  Kleinfelter's doesn't really affect any of your major organs she said males with Kleinfelter's often are tall.  This may be to his benefit because usually with Alagille's Syndrome kids are smaller.  Although, the reason why some kids are smaller with ALGS is because their liver is affected.  At this point Cole's liver is not and we pray that this continues!!! 

And We Wait

There isn't much to report.  Cole will not be having surgery today and they still are unsure as to what approach they want to take.  There has been talk about possibly sending him to the cath lab and putting stents in his pulmonary arteries or open heart surgery and putting a shunt in.  A few of the cardiologists and surgons need to talk and then we should have an idea of what they want to do and when they want to do it.  They are just going to continue to monitor him and see what his oxygen levels do in order to determine when exactly the surgery needs to take place.  So, it sounds like we will just be hanging out at our home away from home.  I am so thankful that we have our own spacious room with big windows that let in alot of sunlight! 

Cole handled the blood transfusion well. His heart rate dropped for a second during the critical time period after the transfusion; giving Ashley a good scare but, it was just because he was in a deep sleep. They changed his pulse/oxygen sensor right after the transfusion and his levels were up in the high 80s. Now was that because of the sensor or because of the transfusion? They took him off of his oxygen to see how he would do and he seems to be holding up well.

He is not allowed to eat right now. They want to make sure he would be ready for his surgery if it's going to happen today. The doctor said we should know by 11 am if he will be going back or not.
The fact that we can wait is a good thing. They aren't as worried about his stability as they were when we first got here and can think things through a little bit longer.

Update

They did some blood work to check for any sort of infection or a low hemoglobin level thinking one of these may be causing the drop in his oxygen level, but everything came back normal.  As of now we don't really know much.  The only things we have heard is that they want to get Cole in for his surgery ASAP.  Although, we want a specific surgeon and his schedule is full so Cole will be an add on.  They are most likely one going to do a partial repair and then in a few months do the full repair.  Cole's pulmonary arteries haven't grown at all since he is born and he has gained 3 lbs since birth.  He is doing really well with gaining weight everyone is thrilled about that.  The doctors have no concern about Cole's liver at this point!  Praise God!!  So, as I was writing this they came in and said they are going to give him a blood transfusion to see if that will bring his oxygen levels up a bit in hopes that they MAY be able to hold off on surgery a bit.

Thanks for praying!

7/13

Cole is being admitted today. His pulse was low and they think he's looking a little blue around his lips. Probably have surgery in the next few days most likely. More info later...

So they changed the abbreviation for Alagilles Syndrome from AGS to ALGS. Apparently we stole some other genetic mutations abbreviation.