June 7, 2012

Good Afternoon!

I am writing to you from the bedside of a very courageous little boy who is soundly sleeping without a ventilator. This is a great day!

Nathan has been in the ICU since he got out of surgery Tuesday evening. Since then, he has been on a ventilator and has had approximately 10 different lines and tubes hooked up to him.  After 2 trial runs, they removed the ventilator around 11:30am and Nathan is breathing very well on his own.  That was one of his biggest obstacles since the tumor is in the medulla which is the area of the brain that controls breathing. He is doing extremely well so far. He has moved both arms, both legs, opens his eyes, and emotionally responds to our presence.  It is safe to say that since I can hold my little boys hand again and look into his eyes I may never leave this chair next to his bed.

The surgeons and oncologist have both been in and they are extremely pleased with the results of the surgery.  They actually think they may have gotten more of the tumor than they thought, possibly more than 80%. We are still waiting on the final pathology report. We hope to receive that tomorrow or Monday.  The hope is that over time we will start to see improvement in Nathan's symptoms.  Although the tumor is still in the place that controls many of Nathan's problems, the lack of pressure to that area should make a huge difference.  We just need to take one day at a time to wait and see what our little guy does. As long as his airway remains open, we will most likely move out of the ICU by the weekend.

Two main questions we still do not have answers to are: what type of tumor is it and what are we going to do to treat the remaining tumor. If the tumor is benign, we may be able to just let it go and do scans every three months until we can use radiation.  If not, he will need to have chemotherapy for several years until he is old enough to safely use radiation.  The other challenges are that the airway needs to remain open so he does not need a trach, the cerebral spinal fluid continues to drain appropriately to avoid a permanent shunt, and the big question is will his airways be safe to bottle feed or will he need to have a g-tube in his stomach.

Nathan still has quite a fight, but each day he is better than he was the day before.  Our prayer is that trend continues.

God has answered every one of our prayers.  We know there are hundreds of people knocking on his door with the same request, please help Nathan.  Lets keep bothering him with the same request, help Nathan to be strong and fight each day.

Mike and I are beyond overwhelmed by all of you.  We can not even begin to thank you for the warmth and compassion you have shown us. You give us the strength to get through each day.  Although we do not have time to respond to all of the emails, we love to hear from you.

Much love,
Beth and Mike