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This is overdue, Ivy is my top priority and she's keeping me on my toes.
Ivy is not having a Cath today. And today's news is not good.
Yesterday during morning rounds I expressed my concerns regarding Ivy. I felt she was the wrong color, seemed uncomfortable even though her swelling was gone, couldn't even sit up for more than 1-2 minutes and as her mom, my intuition said something was wrong. They said they would watch her closely and after I showed my nurse the a video of Ivy the day we were admitted to the hospital she asked the doctors to come talk to me. They said that my intuition had not been wrong yet and they ordered an echo. Sure enough, the leaflets inside of Ivys brand new mechanical mitral valve were not moving. She has a clot! My heart stopped, this is something that should never have happened. Ivy's blood was thin when we came in, like it should be. Her INR was high if anything. Her Coumadin was stopped and they moved her to lovenox in preparation for her Cath. The guess is that since they were giving her massive diuretics perhaps she did not absorb the injected lovenox? I don't know. I didn't want them to use lovenox because it is in the form of shots. Why not heparin? I will never understand. I'm not a doctor but I knew, I begged my husband to say no to lovenox as he was with her when the desicion was made. She didn't cry for the first shot. That's how bad the edema was. She cried terribly once the edema was gone.
I'm rambling... My poor little brain is spinning!
So we made a mad dash to the Cath lab for a fluoroscopy. They let me go with her and they took a look at the valve with mommy by her side and no sedation. She is so incredible! The fluoroscopy revealed no movement, the leaflet is stuck. So the leaflets that move her blood in the right direction through the mitral valve, is not moving. Clot! Devastation is all we can say. They immediately consulted with our Boston team and all agreed that while extremely dangerous used alone on such a tiny patient, TPA was Ivys only hope to dissolve the clot before it ends up in her brain.
So the TPA was started yesterday and ran all night. The dose was doubled this morning. She has had several Echos and another flouroscopy, and my heart breaks at the results, no change. The leaflet still has no movement. At 6pm, her dose will be tripled and then even if they do not get the results we need, they will have to shut the TPA off in the morning. This is a critical time, the dose is so high for her tinyness. We are watching closely, terrified of a brain bleed. Terrified period. My girl is such a fighter! In all of this despair, she has perked up just a bit and is back to ordering us around. She's sick of this all though. I'm so thankful that even though she may not have the endurance to even sit up for long, She woke up this morning and shouted, Mom, where are you? (Yep, she mostly calls me mom!) I said, Right here. And she said, look, it stopped raining! I thought it was funny since its not rained in months but my friend Jaime said perhaps God reminded Ivy in her sleep that the storm she has been enduring for so long will soon be followed by a rainbow!
So now where to pray? If the valve does not change we will need to get on an air ambulance and rush back to Boston. The valve will then need to be replaced. And we all know what Ivys heart and body have already been through. The specialists here are already working with Boston in case that does ends up being tomorrows emergency. We need to pray the valve moves! And pray that if that's not Gods will then that this Precious Little Girl could please be given rest. And please pray for our family. This change of events is devastating. And we really are not prepared to seperate again if we need to head to Boston. Most of all, pray that Ivy's life would glorify the one who made her!