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!
I had never really considered up until now how scary a hospital is for the patients that need to go for non-contagious illnesses. Sweet Ella needs a place that is for others just like her that bans anyone "sick". And I can't imagine the worry with our current flu season. I pray that her O2 levels stabilize and that she remains healthy and happy until you are able to go in and have more work up done.ReplyDelete
You are all in my prayers.ReplyDelete
Praying for for sweet Ella from Utah. You are such a wonderful mom and dad....she is so lucky to have you!ReplyDelete
Well......what a waiting game you are dealing with. You know, us folks out here in la la land, have absolutely no idea what you are going through, although you are opening our eyes. When our kids were little, you would take them to the doctor office and they would play with the nasty toys that every kid touched. Unbelievable, now that you think about all that. Of course, this day and time, with all the germs, we wouldn't let ANY child even touch those things. You just keep that precious jewel of yours as healthy as possible. You and your husband are wonderful parents and little Ella is so blessed. You have to make judgments every day, don't you.? One of these days, Ella will be old enough to understand all this and be able to tell you exactly how she is feeling physically. That will help sooooooo much to be able to communicate with her that way. Pictures are precious and prayers are being sent your way. We want to read your book someday. You could help so many mothers and fathers who in the future will deal with similar issues.ReplyDelete
Ella is beautiful.ReplyDelete
Agree, you have opened our eyes to all that you and your family are dealing with - I am amazed by your faith. I fully believe that IF and I say IF Ella had to go ANYWHERE during the nasty flu season she would be protected by HIS grace - thank you most importantly for sharing those beautiful pictures of your girl - brightens my day to see them - my two are much older and I do miss those the age that Ella is now - - we are praying and checking in on your guys frequently so also THANK YOU for your post to let us know what and how to pray - I know you guys are very busy with much to do - MANY MANY hugs from Colleyville TXReplyDelete
What a wonderful web site you have and it is great we all can offer our prayers and encouraging words. Oh sweet Ella. You are so precious. Hang in there and we will be looking forward to the next blog about how you are doing, you sweet little thing. Prayers!!!!!!!!!!!!!!ReplyDelete