Kayleigh started her day off with many desats back to back which caused the nurse to call in some respiratory specialists to see if they could figure out what may be causing her to have so much trouble. The only suggestion they had was to change her position to see if they would help Kayleigh. It did for a little bit, but later in the afternoon she was back at it again.
The crazy thing that is shocking the Doctors is that Kayleigh is not having the normal type of desat where her oxygen slowly drops from 95-70-50, and then the heart rate drops shortly beind that. Kayleigh is dropping quickly from 95-50-10. At times her oxygen is dropping in to the single digits within a matter of seconds and then the heart starts to drop within 30 seconds after that. Sometimes the heart doesn't even drop at all, so that is what is concerning the Doctors. She is quickly bouncing back which is good, but sometimes she doesn't and needs help.
They did some tests today which possibly confirms that these severe desats are caused by the VSD (hole between chambers) in Kayleigh's heart. The hole is a moderate size, which moderate can mean large for Kayleigh because her heart is so small to begin with. They are doing an Echocardiogram tomorrow to get some more answers, but they noticed that the VSD is causing the lungs to take on fluid due to the heart overworking itself. The fluid is then causing Kayleigh to have trouble breathing and the VSD is causing an issue in transfering a sufficient amount of oxygen to the body. Basically, they both don't go hand in hand and is causing the severe desats.
The good news is that the hole will not get any bigger and can close on its own. Also good news is that they can do heart surgery to close the hole if the medicine does not work. The surgery will both limit the fluid in the lungs and help the heart distribute more oxygen to the body. The bad news that if she needs the surgery to close it, she is no where near the size to have the surgery performed right now. They are needing her to be atleast 4.5 lbs. That is over three times the size she is now (She weighed in at 550 which is 1 pound, 3.4 ounces)
The new medicine they started today is called Lasix. It is a diuretic that will help extract the fluid from her lungs. The other medicine that they will start Monday is called Digoxin and that is to help the heart boost its performance so she can get more oxygenated blood flow through the body. If the medicine does not work like they want it to, they may have to do surgery to insert a pulmonary band to stop the fluid from going in to the lungs.
So right now we are in a game of waiting. I am anxious to hear what the Echocargiogram is going to tell us tomorrow. I will be sure to let you all know something as soon as I find out and can post.
***For those who know about this or have been through this situation, please post and let us know your experience.
***For all the others, please post (in the comment section below) a prayer for Kayleigh that this issue will be quickly resolved by the hands of God and that Kayleigh will quickly grow out of this severe desaturation phase.
Thank you everyone and God Bless!!!