Tuesday, March 6, 2012

Hard day

Jensen looks better and better every day. We are so proud of him! He went to get his MRI today at 10:30 and waited around most of the day for results. While we were waiting our attending told us that the clot in Jensen's left leg had completely occluded the artery. However, his body had already formed collateral blood vessels around it and is supplying blood to his foot sufficiently. Unless the clot dissolves, we will probably never be able to use that leg did future procedures (Caths mostly). This isn't great news but at least he has a pulse and decent BP in that leg.

Finally we spoke with Dr.Licht and the news wasn't great. Jensen was already at risk for learning impairment and developmental delays simply by having a CHD. After the extended surgery times, amount of time on bypass, ECMO, low oxygen, and seizures there is a pretty concerning injury to his brain. His brain volume looks significantly decreased compared to the pre-surgery MRI. This could be an injury or it could be dehydration from the diuretics, we aren't sure. There is also injury to his cerebellum. This controls tone, balance, posture, coordination, etc. Also, we knew he had a subdural bleed, but it was larger than what was previously described to us. To prevent it from growing larger, they stopped his heparin. The heparin was being used to thin his blood bc of the clot in his leg. Hopefully the clot does not grow now that he is not on blood thinners for the subdural bleed. It's all a balancing act.

Lastly, Jensen has an injury to his hippocampus. This area involves learning and memory. The damage was most severe in this area. None of this information is qualitative. We have no idea how this will affect him or what his quality of life will be. The hope is that if we are aggressive with therapy, early intervention will make a difference in his outcome. They are working with our social worker to set up physical, occupational, and speech therapists as well as a pediatric neurologists back home.

This has been an incredibly frustrating day. We see him improve every day and this feels like we are taking steps backwards. I just wish our little man didn't have to fight so hard.

5 comments:

  1. sorry to hear this news :( they told us the same thing with gabe (since he had incredibly low 02 sats, spent time on the pump, etc). we are actually taking him tomorrow to get him evaluated for developmental delays. i'll be praying for little jensen. i've read a lot of stories with good outcomes as far as developmental delays, even when the news has been not good.

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  2. Poor little guy! I know most of this is a waiting game to see how much he's actually affected but its hard to hear. He looks so strong in his pictures so maybe he'll fool everyone. We'll keep praying for him.
    Jeri

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  3. Amy, maybe this is the doctor relaying the worse case sernario. I pray for a wonderful recovery for Jensen.

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  4. I can relate to the damaged left femoral artery. Zoe's is fully occluded as well, but she's developed great collaterals to compensate. Our little warriors' bodies have an incredible ability to heal and compensate for damage. My thoughts and positive energy for Jensen to continue to be resilient and beat the odds. He's done a great job of that thus far!!! (((Hugs)))

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  5. Jensen may have a bumpy road ahead, but he has proved himself a fighter. He is blessed with two amazing parents and an outstanding support system. I understand that medical quality of life and emotional quality of life are two entirely different things, but there is a correlation. With you and Jeremy is his corner, Jensen will have the very BEST resources and care available- helping him to achieve the best of both. Now- please continue to shower that little chunky-legged man with love for all of us. ~Melissa

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