Here is the latest on our family...

Wednesday, December 10, 2008

Day 15

While today was a good day for Henry, it was a devastating one for us.  Henry's MRI from Monday night revealed that he has diffuse leukomalacia.  The damage appears to be scattered throughout the white and gray matter of his brain.  The neurologist described the severity of this damage as "moderate."  

The swelling in his brain masked this damage during the first MRI.  Since then, the blood that was trapped in his ventricles has been clearing, and a more realistic picture of the condition of his brain has presented itself.  Unfortunately, the blood in his ventricles has become the least of our worries.

The doctors believe that his injury was sustained one or two days prior to birth and was likely caused by either a temporary constriction of the umbilical cord or some interruption to blood flow through the placenta.  They make this estimate based upon three factors:
1.  The seizures and apnea began almost immediately after birth.  Such symptoms usually require hours or days to manifest.  
2.  His blood acidity was normal at birth.  This would have required time to normalize after an incident of low blood flow.
3.  The damage is spread throughout his brain.  This is consistent with a full constriction of blood rather than a localized incident.  

Only time will tell us how Henry's development will be impacted by this condition.  

Henry continues to work with therapists to improve his eating, coordination, and focus.  We are beginning to make arrangements for the therapy that he will need after we bring him home.  The nursing staff has begun training us to manage his feeding tube and monitoring equipment so that we can bring him home soon.  

Photos from today








PenJames said...

Meade and Sean, I don't know what to say except that I am so sorry this is happening. I wish I could be there in person to give you each a huge hug and share the tears together. Miracles do happen and I am hoping against hope that there is still one reserved for Henry. I hope you are able to take him home soon and start to get into some kind of reality, whatever that proves itself to be, and for you to be your own little family in your own home. Sending heaps of love over to you tonight. PJLI x

Nilsa said...

Sometimes having answers you've been longing for are hard to hear. My heart is heavy today. But, as your friend in the previous comment suggested, let's hope Henry keeps making strides forward so you can bring him home. He's no less beautiful than he was yesterday.

egan said...

I found your blog via Nilsa. I'm the parent of a 16 month old daughter and my heart goes out to you. Best of luck with everything and know you've got people pulling for your son and your family.

wjones7412 said...

We're thinking about you all the time.
Please give Henry a extra special hug for me.

Susan said...

Dear Meade and Sean,

I am so sorry to hear the latest news about Hank. There's really nothing comforting I can say except this: you have a huge support network to help you through whatever is in front of you. I hope my family can be part of that network. The most important thing I've learned in life is to ask for help. You're not alone.

Thinking of you at this difficult time,

Hotch Potchery said...

I am also a stranger, but have been following your story from Nilsa. I am so sorry about your son. He is so cute, and you seem like such a sweet family. I wish you all the best.