Saturday, June 23, 2012


So much has happened since the last update I'm not sure where to begin. Yesterday Jensen was doing ok and Jeremy and I felt comfortable enough to go across the street for dinner. We came back and immediately noticed unusual movements. Jensen had started having seizures again (he first had them after the Stage I while he was on ECMO). He progressed pretty quickly from a small lip quiver and hand twitch to a full body seizure. He was continuing even after being dosed with anti-convulsants. Finally, after a couple of hours he settled back down and looked ok. We decided one of us should stay with him while the other sleeps at the hotel. I went back to the hotel while Jeremy stayed. Jensen started having more seizures and neuro ordered a portable head CT to see what was going on. The report from radiology came back that it was clear. I was crawling in to bed and Jeremy called again. 

Neuro looked at his scan and they realized Jensen had a brain hemorrhage and multiple strokes. I got back to the hospital as quickly as possible and Jeremy and I completely fell apart. Our baby has been through more than enough and this is infuriating. We put him through life-saving heart surgery and he ends up with neurological issues and a fantastic heart. 

This info came down at about midnight. We were told that the stroke specialists and Dr. Licht  would be by in the morning to explain everything and answer our questions. The only thing we could do at that point was wait, which was agonizing. We both stayed in the parent sleep rooms just down the hall from the CICU. 

This morning when we got up, they had been moved Jensen out of a pod and into a private room (Weston's old room for those of you who know him). We anxiously waited for rounds and for neuro to show up. Once they did, we got pretty much what we expected. Prognosis is impossible to say. The affected areas are hard to pinpoint. Only time will tell. Blah. Basically all the vague answers that I would expect from a cocky neurology fellow.We were frustrated to say the least. 

Dr. Licht is the only one who actually gave us real answers (that's why we love him so much). He explained that Jensen had watershed strokes, which are different from strokes caused by clots. This happens because of low oxygenation or hypotension. Arteries in the brain supply blood to certain areas but they don't overlap. The brain tissue in between two arteries is oxygenated by "extra blood" that is pushed out from each of the two arteries; its basically that both arteries are responsible for contributing blood supply to that area. When BP is low, blood is not pushed out with enough force to completely supply that area. The damaged parts of his brain indicate that Jensen has the potential for left  leg weakness and temporary blindness. The damage would not actually make him blind, he would only  appear blind because he is so young. He would be able to see objects in front of him, just not make the appropriate connections to understand what it is. Of course this is all conjecture and we will not know much until he is recovered. Jensen will be going in for another MRI to get a more accurate image of his brain.

The seizures were most likely caused by a combination of things including: the subdural and subarachnoid bleeds, the stress of his surgery day, and his history of seizures increased his risk for them. Jensen has also had low platelet counts today. Hematology wants his platelet count around 100,000 and this morning he was at 37,000. He had 3 platelet transfusions in the last 24 hours. Once the platelets are under control they will re-evaluate for anti-coagulation therapy. Keep in mind that he has also had multiple catheterizations in the past week and is at risk for clots. He is also now at greater risk for strokes. He needs blood thinners for his new stents and for the risk of clots. He needs to have a higher platelet count because of his brain bleed. Remember how I said everything is about balance? Yea, that applies now more than ever. 

The goals for the immediate future are to get rid of his swelling, monitor his anti-convulsant levels, and raise his platelet count. Jeremy and I are completely exhausted in every way. We have been happy, devastated, scared, and furious in the past few days. The ups and downs are so trying. Please continue to pray for Jensen. He needs strength to overcome this damage. Thank you all.

Oh and sorry if this post was detailed and/or sporadic. The main purpose of this blog is to help Jeremy and I remember Jensen has gone through. Of course we want our family and friends updated, but we also have foggy memories right now and this helps us keep track. 

1 comment:

  1. Jennifer SchoondykeJune 24, 2012 at 3:49 PM

    My heart goes out to you both. You are in my prayers and I've put you on every prayer list that I know of.