Christopher's Homecoming 3

Thursday, May 20, 2010, 3:30pm

The difference between yesterday and today is remarkable and something I really needed.  I was feeling so very discouraged last night when I wrote my update, and going to bed feeling that way was tough, especially for someone like me.  I love nothing more than beginning and ending my day on a positive note and it usually takes a lot to get me down.  But yesterday... I was down!!!  I was feeling weak and incompetent, unsure of how I was going to navigate this next part of our journey.  After our day today, though, I am feeling much more optimistic.  I know that there will be many ups and downs, but I will hang onto the 'up' days like today, knowing that eventually there will be more and more of them.

Christopher and I started our day by stopping in at my MOPS meeting.  For those of you who aren't familiar with MOPS (Mothers Of PreSchoolers), it is a group of mothers who meet several times a month.  I have been a Mentor Mom for this group for the past five years.  I am there to provide support and encouragement for these young moms who are raising their families and feeling as though their lives will never be the same again.  What they don't realize is howthey inspire me and they were unbelievably supportive and inspiring during the past month.  It was great to see them all after having been gone such a long time and they couldn't believe that Chris was there with me.  I had the opportunity to talk with them a little about dealing with crises, sharing with them much of what I said in yesterday's update/blog on Christopher. (photo of Chris and I during our talk with my MOPS moms) 

I told them that it is natural to wonderhow we would conduct ourselves in moments such as these, but that the strength and character we possess is often not evident until we find ourselves entrenched in difficult situations.  I encouraged them to continue letting their little ones wander away from them, giving them the independence that they so need to grow into strong adults.  Tree-climbing is still an activity that I full-heartedly support!  All children need to do it!  Accidents happen and the worst thing we can do for our kids is to keep them on a short leash, holding their hands through life and micro-managing them.  I love something that I once heard Amy Grant, a singer and songwriter say... "You either prepare the road for the child or the child for the road."  I have chosen to prepare my children for the road, and my hope is that as they move through life, they will be competent enough to handle, with grace, whatever comes their way.

We had an appointment this morning to see Christopher's Neurosurgeon, Dr. Peter Sun for his post-op visit.  We sat down with him and he went over the CT Scan and the MRI with us, answering all of our questions and explaining a bit more about the injury to his brain.  He pointed out that there is some bruising on the left side of his brain above his ear (image above is of the MRI, and it is reversed, so left is right and right is left)!  The bright area on the side of the image near the swelling (which is toward the bottom) is the affected area that he was talking about.  Dr. Sun asked me what I am seeing in Christopher that is indicative of injury, so I told him about the cookies/cupcakes/sweets interaction yesterday.  I explained that he understands individual pieces of information but has difficulty putting them all together, seeing the bigger picture and making sense of it all.  


It was interesting that after I told Dr. Sun about this, he turned to Christopher, who piped up and said, "Well, those cookies really ARE for ME... after all, the whole reason everyone brought them to us is because of ME!"  I looked at Dr. Sun, who cocked his head at me, as if to say, "Well???" and said, "This really IS different from anything he would have ever said or done... he would have never been so possessive about anything, especially food!"  He said that this is a classic example of the type of injury that he has sustained.  This part of his brain controls recall and comprehension, so none of us should be surprised at what we are hearing from Chris.  I was talking with my friend Yvette this afternoon and she reminded me that he and I had the exact same exchange 10 days ago in the hospital when she was there for a visit.  I asked him if he would like to share his box of chocolate-covered berries with us and he pulled them close to his chest, saying that they were all for him!  I had already forgotten about that!  Recall and comprehension...

Dr. Sun recommended Neuro-Psych testing for Christopher.  This would be a two to three hour comprehensive test that would give us a clear understanding of his cognitive abilities and would allow us to know where he needs help.  It will also provide a baseline of where he is now so that we can monitor the progress that he makes as time goes on.   He is very pleased with Christopher's rapid recovery and feels confident that there will be a great outcome.  We should expect his progress to slow down as the weeks and months go by, which is normal. 

The incisions on Chris' head are healing nicely and we were able to learn a little more about the surgery that Dr. Sun performed on Christopher that very first night at Children's Hospital.  He made the incision (photo above) on the right side of Chris' head, drilled a hole through his skull and inserted an intraventricular catheter, which is a thin, flexible tube through the brain matter into the lateral ventricle, which contains liquid (cerebrospinal fluid, CSF).  The catheter monitored second by second changes in the intracranial pressure (ICP)... remember the ICP... one of the many numbers we were watching back in those first eight days that he was in the coma?  It also lowered the ICP by draining CSF out through the catheter.  


This monitoring is done in cases of severe head injury when there is concern about brain swelling.  In addition to draining CSF, Christopher's doctors and nurses treated the ICP by changing his ventilator settings and giving medications through IV's. The reason this monitoring was so crucial was that raised intracranial pressure meant that both nervous system (neural) and blood vessel (vascular) tissues were being compressed.  Left untreated, it would have resulted in permanent neurologic damage.  Dr. Sun told us today that the fact that the pressure in Christopher's brain never increased to the point that he needed surgery to open his skull was a really big deal, meaning that the injuries he sustained were limited to the initial bruising and bleeding in his brain.  Just another reminder that we are so fortunate to have been at Children's Hospital during this critical time, where the care was the best we could have asked for.  A full-recovery is a realistic expectation.  My walking miracle...

Today as we were leaving Dr. Sun's office, he told me that he had heard about my blog and was wondering if I would be willing to let him link it to his website.  I told him that I would be honored...

Tonight I expect that we will sleep well, having had a wonderful and peaceful day.  I have so much to be thankful for...

Love, Laura