The balancing act

In October Ella had to have a cath surgery due to constant desatting (oxygen dropping to dangerous levels).

The surgery reviled a very large collateral that they had to plug (her body created a new route to flow the blood the "right" way since with Ella's special heart they make her blood flow differently then the natural way.)

The plug should have instantly raised her sats to a good level, instead Ella continued to desat, we don't know why.

We watched her as she made some slow improvements.

In the begging of November Ella finally hit 86 and her oxygen leveled out there.

The good news only lasted about a month and in December she started to have unstable sats again and had some desats from time to time.

On Dec. 27th we took Ella to Dallas to be checked. All the tests looked good besides a slightly elevated blood oxygen test, but because of her symptoms it was determined that something is wrong and we needed to go back in through a cath surgery to find out what.

Because of the severity of the flu season, we all agreed it was in Ella's best interest to try to wait out the flu season before exploring further into what is causing her problems.

On Jan. 10th Ella started to run a low grade fever, it only went as high as 101.4, we watched closely and hoped it was just the molar she was cutting (since she has run a low fever with some teeth in the past)

We then realized her heart rate was way too high, by that night, instead of her normal 90's it was in the 180's while she was sitting perfectly still.

I called the doctor on call in Dallas and they urged us to take her to the ER, but by God's grace I was able to persuade her to let us monitor Ella at home as long as her heart rate continued to come down. Her heart rate did come down to the 120's after she fell asleep, and although it was still high for her normal 80's sleeping heart rate, we decided she was still less at risk at home then in a germ ER.

The next morning we took Ella to our family doctor where she had a series of tests to rule out any sickness that may be brewing, since sicknesses can present themselves in heart babies like this. All the tests showed no viruses.

We still don't know what caused her heart rate to do what it did. Her cardiologist thinks she may have had some sort of virus despite the negative tests and lack of other symptoms, I think it could have all been related to that molar even though it never did come through the surface yet. Whatever it was it hit her hard and it was scary.

Since then her desats have been less frequent then before, but still happen from time to time. She is out of breath everyday. She is blueish/pale several times a day. When she plays too much, her color is really off and she starts to cough and point to her mouth and say "choke". It breaks my heart that her lack of oxygen makes her feel like she is being suffocated just because she was playing like she wants to.
 
Our newest concern is that when she is really out of breath and blueish and we hook her up to her monitor her oxygen has been high 80's. While these numbers are ones we would love to see regularly, the concern is that they do not match with her body. Her oxygen should not be higher then it's been in over a month if she is blue.

So after talking to her AMAZING cardiologist on the phone yesterday, we are still where we were. She needs a cath but we have to decide at what point the risk of keeping her home is more then that of  a hospital full of sick kids during one of the worst flu seasons. Prayers for her safety and wisdom for us and her doctors are SO appreciated. 

Until we get her cath we really won't know more then that, however we are watching her VERY closely and it is crucial that she stays well. Over the last few days she has been satting in the 70's barely even touching the low 80's from time to time. While that is "okay" it is not ideal, and if it gets too much lower we will have to do something. It is SO important that she stay healthy right now, sickness means lower sats, lower sats when sats are already low mean hospital, hospital during flu season means more sickness, more sickness means more complications... etc. It's just really important. Prayers for all of us to stay healthy SO appreciated.

We are in a difficult waiting game, we are all stumped as to what is going on. We are leaning on our faith that God is in control. We do ask that as we approach this upcoming surgery, that you please lift Ella up in prayer. She is a miracle already, we know she is strong, but we know that this is all new to the medical field and we are still scared, because we see reality all around us.

Thank you all for your love and support!