February 5, 2014

Today was another long day at the hospital for Nathan.  Nathan had a mediport placed in his right chest on December 10, 2012.  They placed it when he started weekly chemo treatments.  Although it was the last thing we wanted him to have at the time, it has been a true blessing.  We are able to numb the area and every time he needs blood drawn or a chemo administered, they can go through the port and Nathan does not have to get an IV.

The port is a direct line to the heart, so it does not come without significant risk.  We have been very lucky for over a year, but the past few months the port has looked very red and puffy with drainage, so they have not been able to use it.  After two ER visits in two weeks and countless consultations on what to do, Nathan ended up in Surgery yesterday to remove the port.  That was the right decision because it was badly infected.  The surgery lasted about 1 1/2 hours and then he was in recovery for another 3 hours.  Unfortunately, they were not able to place another port because the risk of infection is too high and the same thing could happen to the new port.  We will have to do a second surgery to place a new port.  The infection was so bad that they were not able to close the wound.  It is packed with gauze and a nurse will come for the next 6 days to take care of the wound to minimize infection.  Nathan has to have limited activity for 10-12 days while his body slowly heals.

We started at 8am in the clinic and got home around 5, but Nathan was a CHAMP!!!  He was pleasant and very patient all day.  They medications seemed to have effected him more than usual because the entire time we were in recovery he just wanted to lay in my arms and relax.  He reminded us several times that "rest is best" when you are sick...thank God for the lessons learned in Daniel Tiger's Neighborhood!  After we got some fluids in him and he started to become more alert, he looked up and said, "veggie puffs and dippy dip daddy Michael." It was like he was a mature adult laying in bed making his requests.  It was actually quite comical.  He is quickly learning the routine because his next request was M&M's.

Nathan was just under general anesthesia two weeks ago and will have to go under again in three weeks for his next MRI.  Three times in 5 weeks for a two year old just doesn't seem right, but he never complains or fusses.   It is not easy and we certainly see our share of tears, but Nathan has learned this is what he does...that is what breaks our hearts.   This is part of his life and he has accepted it much better than we have at times.  I would give anything to make these days go away and Nathan does EVERYTHING to make our family enjoy each day no matter where we are.  He never loses his spirit, his sense of humor, or his smile.  This little guy teaches more about life in one day than we could have ever imagined.

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Waiting in the oncology clinic at 8:30am. 

Cruising the halls in their brand new truck before going into surgery.