Tuesday, May 4, 2010

Christopher's Brain Injury 9

Wednesday, April 28, 2010, 11:45 pm




Just remember...it is all relative.  Today was a good day.  A good one, that is, compared to any of my 6 previous days.  I simply couldn't get it out of my mind.  I kept looking at the time and thinking to myself, "a week ago at this hour, I hadn't a clue how very different my life would look by the end of the day...", "last Wednesday at this time, Paul's focus was on work, and all that he needed to get done before he could head home for the evening...", "7 days ago, about now, Emily was extremely annoyed with her little brother because he had, once again let his friend take a shower in her bathroom and she needed to get in there...", "last week at this time, Christopher's biggest challenge was trying to find the best tree in the neighborhood to climb..." Today, life looks very different.  I now know more about traumatic brain injuries than I ever wanted to know.  Paul hasn't thought about that thing called work for the past 7 days.  Emily would give anything if only her little brother would do something to annoy her, and Christopher, my sweet, precocious, inquisitive boy, doesn't have a clue where he is, how he got there, why he is there, and what his future holds.  But time has continued to march on, and here we are, on the one week anniversary of Christopher's accident, somewhat settled into our new routine yet being fully aware that this routine will only be temporary.

Last Wednesday night as we sat in a conference room on the third floor of Children's Hospital just outside the PICU, surrounded by friends who had rushed to our sides when they heard the news, we were well-aware of the precariousness of the situation yet no one was brave enough nor willing to actually say the words.  There we sat, eating pizza and drinking wine out of paper cups, laughing, crying and questioning.  All of us thought the same thing...yet no one dared speak the words.  It is slowly seeping out.  Paul told a friend that there are not many who see their child so close to death and then pull out of it.  Our friend and nurse told me that she thought it was a very good possibility that Christopher wouldn't make it.  I really didn't know if I would ever see my little boy climbing trees, wrestling with Chief and telling me he loves me again.  We all wondered silently, fearfully, only a week ago if Chris would still be with us today, and we are fortunate to be able to say that not only is he here, but he is beginning to wake up and show signs of frustration with all that is going on in and around him.  

Christopher's doctors want to close up as many 'holes' in his body as possible.  With the pressure monitor and fluid drain gone from his head, and the many IV's in his arms replaced by a central line, they removed the arterial line today, so they are slowly reducing the risk of secondary infection.  He is now regulating his temperature without cooling blankets, his blood pressure without medication and his IV drip of nutrients has been fully replaced by food given through a feeding tube in his nose.  The paralytic drug has been stopped, they are slowly lightening his sedation and are now looking for him to begin initiating breaths on his own.  He does this when he becomes agitated from a coughing attack or when his doctors and nurses do something that annoys him, but in general, he is simply letting the respirator breathe for him...15 times per minute.  Hopefully this will improve over the next 24 hours so that he can move closer to having the respirator removed.  

His neurosurgeon, Dr. Sun came in this morning and tried to get him to hold up two fingers and wiggle his toes.  He was forcefully rubbing Christopher's breastbone with his knuckles while performing the test, and telling Chris that he would stop 'bugging' him if he did what he was asked.  While he did try to reach up and stop the incessant rubbing that was going on, Chris did not hold up his fingers nor wiggle his toes.  I was concerned, so I asked if he was expecting or hoping that Christopher would respond positively.  "At this point" he told me, "I am hoping. It is still early and he is heavily sedated."  That was good to hear.  A bit later in the morning, I was standing by his bedside, holding his hand and talking to him when he suddenly opened his eyes and looked at me.  It started with him raising his eyebrows and lifting his arm slightly, and then all at once, there were those blue eyes staring straight at me.  It had been almost a week since I had seen that.  I was thrilled!  His nurses were thrilled.  His doctors were thrilled!  

They took him to have an MRI this evening and we will get the results of that tomorrow.  I am at home tonight and Paul is on 'Christopher vigil' at the hospital.  He just texted me and said that it is very peaceful now.  He is sleeping well, his temperature is good, and his oxygen is down to room air...in other words, his sats (oxygen saturation) look good.  I can now attempt to sleep knowing that all is as well as can be expected 17.89 miles away from me.  

Now to get a bit of business taken care of.  I want you all to know that I read each and every e-mail that you write to me.  As I have said previously, one of my favorite times of the day is the time I spend reading what you have to say, what is on your hearts, the thoughts that you are having about this journey that we are on, and who you are sharing these e-mails with.  It is absolutely astounding the way word and prayers are spreading regarding Christopher and his accident.  What began one week ago as an e-mail distribution list of about 50 has now grown to multiple lists, adding up to almost 300.  My e-mails are being forwarded to hundreds of others who then forward them on to their family and friends.  I receive e-mails from people I don't even know, and see my words copied and pasted onto prayer chains, facebook statuses and even twitters.  I say all of this to tell you, from the bottom of my heart, THANK YOU for your prayers and for telling everyone you know about my son's battle.  I wish I would have the time and energy to tell each and every one of you what you and your words mean to me, but I know that is not realistic.  While this is not as personal as I would like, please know that it is genuine.

Regarding meals, dog walking/feeding/loving, driving Emily here and there, and other offers to help, I am humbled.  As much as I would like to say that I can handle this on my own (that is what I've always done), I know that that is not realistic.  We are planning to set up an account on a website called "Caring Bridge" when we are settled into more of a routine and have a better idea of our long-term needs.  This will streamline the various groups of folks who want to help out... our neighborhood, the school community, church, World Vision friends, Mustang Soccer community, MOPS, etc.  Once we have it set up, you will be contacted, likely through e-mail.  Thank you again for your generosity...I am overwhelmed by it.  

Thank you to all who have come to the hospital to sit with us and visit Christopher.  We love seeing you and spending time with you.  Again, we are humbled by your willingness to share your time with us despite the business of life.  We have loved the meals that you have brought with you, enjoyed the treats and basked in the fellowship.  Please don't ever feel that you are intruding.  Believe me, you are not.  FYI...we also take out-of-town visitors...Thank you to those of you who have brought meals and goodies to the house.  They have been so appreciated!  

Please pray for Christopher to continue on this positive path of recovery as he faces daily challenges.  My what a difference a week makes...thank God we are able to say that it is a trend in the right direction!

With love, Laura

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