Here is the latest on our family...

Sunday, July 12, 2009

Home again

We were discharged from the hospital around noon on Saturday, possibly a record for the earliest anyone has ever been discharged from a hospital.  Before we left, Hank had a fast MRI in order to get a baseline image for future comparisons.  We have not yet seen those images, but we do not expect any real change so soon.  One of the residents had to reset Henry's shunt after the MRI.  

Since leaving the hospital, we have been hanging out at home recovering from an eventful few days and attempting to get Henry back into a normal sleep/wake schedule.  

Here are some pictures of Henry that we have taken over the past few days:

Last weekend, we took Henry for his first swim.  He will have to wait a few days for his stitches to heal before going again.  He seemed to enjoy being in the water.


We arrived at the hospital bright and early on Friday to prepare for the surgery.


Henry's head before the surgery...


...and after the surgery.  The blue on his head and ear is from a specialized device (called a "ball point pen") used for denoting which side of the head will receive the shunt.  The orange stain is disinfectant.  The stitches do not need to be removed, but we do need to keep them dry for a few days.  The valve sits under the scalp just below the cut.  It does not show well in this picture.


He has a matching scar on his tummy.  This one has a thin artificial skin covering it.  Surprisingly, it does not seem to cause him any discomfort at all.


Here are some pictures of Henry sleeping soundly after the surgery.






Finally, he awoke enough to take a bottle.


Henry looked adorable as we prepare to leave the hospital.


Friday, July 10, 2009

Up and at 'em

Hank is awake and just finished breast feeding.  His voice is hoarse from being intubated during the operation, but he is vocalizing as he usually does.  He is no longer connected to the IV drip, and Meade is holding him free of any sort of monitoring equipment.  We are managing his pain through children's tylenol only, although we have morphine standing by if needed.  

He had an X-ray earlier this evening that showed the position of the shunt.  It truly does reach into the very center of his head.  The valve sits under his scalp, and the drainage tubing traces down his neck before looping three times within his abdominal region.  He will have a fast MRI tomorrow to set a baseline for the size of his ventricles.  

We expect to be discharged from the hospital tomorrow afternoon after a final consultation with his surgeon.

Resting peacefully

We found Henry sleeping peacefully in the recovery room, possibly the most chaotic environment that we have ever experienced.  As much as parents dislike surgeries, apparently the children undergoing them dislike them even more.

We have since been moved to a private room while we wait for Hank to wake up and for a bed in the neurological evaluation area to become available.  

All of Henry's vital signs are strong, and his new scars will lend some street cred to his otherwise cherubic visage.  

Successful surgery

We just chatted with the surgeon, and Henry's surgery was quick and uneventful.  We will soon be headed to the recovery room to wait for him to awake.

Tuesday, July 7, 2009

Surgery scheduled

Henry's surgery has been scheduled for this Friday morning, July 10.  We will post an update after the surgery as soon as we are able.

Friday, July 3, 2009

MRI #3

The past few weeks have been fairly calm for us.  Henry has been getting lots of therapy, and he continues to make slow and steady progress on nearly all fronts.  In addition to nursing, he is also eating baby food.  While he took an instant liking to vegetables, especially squash, he is less certain of fruit.  After a few consecutive attempts at a given fruit, though, he usually starts to like it.  Here is a video of the second time we fed him bananas:

Our calm was disrupted this week.  Five months ago, Henry's head circumference was measuring in the 5th percentile for his age group.  This measurement has been steadily climbing since that time and is now in the 90th percentile.  Increase in head circumference is driven by two factors:  brain development or the pressure from trapped cerebral spinal fluid (a condition known as hydrocephalus).  Given the nature of Henry's brain injury, the latter is more likely.  However, Henry's head is not misshapen, his fontanelle is still soft, and his eye examination showed no abnormal pressure behind his eyes.  Each of these factors is evidence against hydrocephalus.  

To find out what is actually going on inside of Hank's head, our neurologist ordered an MRI.  The MRI was performed at Evanston Hospital, where we spent most of the day waiting for Henry to wake up from sedation.  By the time he awoke, the results had been read, and we were sent directly to Children's Memorial Hospital in Chicago for a consult with a pediatric neurosurgeon.  The new MRI shows that Henry's ventricles are now much, much larger than they were back in December, the time of his second MRI.  Ventricle size increase can be caused by either brain atrophy or fluid retention.  Due to the dramatic increase in size, our neurosurgeon suspects that both factors are present.  

A shunt is the usual apparatus for dealing with excess fluid.  Because of the extremely swollen ventricles and brain matter of unknown integrity, we need to take extra precaution that Henry's brain does not collapse due to draining the fluid too quickly.  To reduce the risk to Henry's brain, they are going to install an adjustable, high-pressure shunt.  Once installed, the pressure point of the valve on the shunt can be adjusted by using a special magnet.  (We won't be doing this at home.)  Our goal will be to drain enough fluid from the brain so that the brain tissue has optimal space in which to operate but not so much that his brain collapses.  He will be closely monitored by the surgeon at Children's Memorial Hospital.  Children's has a special MRI for monitoring ventricle size that requires only about five minutes to capture the image and does not necessitate sedation.  

We do not have a specific date yet, but we have been informed that Henry's surgery will take place late next week.  Although this surgery is a big deal for us, it appears to be the simplest, most routine surgery that a pediatric neurosurgeon performs.  Hank's surgeon assures us that he will be back to normal within a couple of days.  

If Henry's brain is currently under stress from being compressed, we may observe an increase in his functional development once the pressure inside his head is normalized.  Meade and I are resisting the urge to hope or speculate at this time.  We want to get him safely through this surgery, then we'll see what unfolds.  

OK, enough of the medical discussion.  Henry continues to grow bigger and cuter...  

Here he is trying to wake up from being sedated for the MRI:



Then at Children's Hospital for overnight observation:


Henry had his first haircut!  Thanks, Big Don!





Here is our Big Guy practicing his sitting in the corner of the couch:


Here is some serious bed head:



Hank loves hanging out with his family.





Finally, we're not sure if this is a grumpy face or if he is just making fun of his dad...