Monday April 1st
Is this an April fools Joke? Ellie loves April Fools this would be a pretty extravigant and expensive April Fools Joke. Unfortunately its not, its our reality. I told Ellie we would celebrate May1st Fools day as she is missing one of her favorites.
Please keep Prayers going. Ellie was able to squeeze my moms hand with her left hand this morning. She is in MRI now.
They told us after MRI that Ellie not only had pressure buildup in the brain from shunt malfunction that she had a stroke due to thinning of arteries. They are guessing this is from the many years of chemotherapy. Doctors here along with doctors back home informed us that there was nothing we could of done to prevent it. Also there was no way they could have predicted this. My first reaction as a mom is “Did I do something wrong?” and it was nice to hear that this would of happened anywhere and could happen at any time. Ellie had a Echo Bubble Gram and will continue to do it to check the flow of the blood and her arteries. They plan on bringing her back in surgery this morning to put shunt in. Currently she has external drain from her head. They are concerned with open wound of an infection. Ellie was able to squeeze with her right hand which melted my heart as we where not getting any right side reactions at all. They think her hand will mostly come back they are unsure about her leg. Ellie is a fighter and we believe. We will begin heavy physical therapy, occupational therapy and speech therapy once they are able to remove the breathing tube.
Tuesday, April 2nd
Just talked to Neuro Surgery and no go on the surgery today. They need to figure out why she had a Stroke, shunt malfunction and seizure all during same time. She is going down for more tests. They see some bacteria in her tubing in lungs so goal is to get breathing tube out today and see if Ellie can talk. Fingers and toes are double crossed and constantly praying. She is such a warrier. She has a pick line and is now having a 3rd IV put in. She is like a pin cushion right now. So proud of how brave and strong she is being. She has been awake eyes open today.
Ellie has a ICU (doctor, fellow & nurse practitioner), she has 3 neuro surgeons, 2 neuro nurse practitioners, along with neuro fellows, she also has been seeing a Neuro Oncologist, infectious Disease doctor and nurse practitioner, Neurologist fellow and doctor. I’m trying to think who else is working with her here. Oh she has a one on one nurse that does not stop working. She has a list of things she has to do including suctioning Ellies throat, checking all Ellies IVs and Picu line, stop, drain, and measure brain fluids, Nasal tube drain, check and drain catheter, administer medication, check Ellies vitals, check her eyes, etc. the nurse doesn’t stop.
This is right after tubes where taken out but soon after they had to put nasal tube back in.
They took out some of the tubes including breathing tube later in the day. This gives the nurse a little break. Ellie has not talked to us yet. She seems very frustrated that she can’t move one side of her body and very confused. She won’t even look at me. She did smile when Face Timing with my sister and brother in law. Ellie has a staff infection now to add to all her other issues. They are not sure where or when she picked it up. I’m extremely drained emotionally and physically. The cafeteria is really far so the staff got me a wheel chair as my MS is acting up. I was able to get a massage in the family center downstairs for 20 minutes today from volunteer. Ellie is not able to swallow so we where kicked out of room and they are placing some tubing back in her. Poor thing, this just isn’t fair. We saw occupational therapy today. We will see feeding and swallowing expert tomorrow along with physical therapy. Ellie is so hungry my heart is breaking for her. She already is so skinny I cannot imagine her dropping even another pound.
A mother with a battle ahead of her.