Fill me up buttercup... we are at the half way mark.

It has been nearly 7 weeks here in the NICU, we have to say it is amazing how some of the nursing staff have become part of the family.  They are truely a unique gift to us and Channing, they are so much appreciated and treasured.  They have made our ride with Channing much smoother and less taxing as they help to treat Channing as well as us here during our daily visits in the NICU.  Currently, we have the pleasure of plant-sitting for a nurse that is on vacation.  Vanessa kindly took in the nurses plants to return the favor for taking such good care of Channing.  Though the task of taking care of plants is less cumbersome than Channing’s needs, we are still tweaking the right amount of sunlight and water requirements for the plants.  Upon our nurses arrival from vacation, we hope for a safe discharge from our home back to hers.  A detailed report to follow.

We apologize for the delay of usual posts, however we have been graciously taking time with extended family visits while watching Channing grow and experience his daily life in the NICU.  Channing has experienced a few changes since our last post. For one, he has grown a bit and is over 7 pounds.  This has made the care team increase his feeds concurrently; he is now on a 52 mL feed every three hours.  Of the 52 mL he takes 25-35 mL of it from the bottle and is now getting the rest by gravity feed through his NG tube.  The amount he is taking from the bottle is very good considering his fills went up as well.  The last post I mentioned he was not tolerating the increase to 50 mL dialysis fill, the nephrologist backed the fill to 45 mL on 31st to ease Channing’s comfort.  This last Thursday, the 3rd of January, the fills went back up to 50 mL and he is tolerating it much better than the last attempt at the same increase. Dwell time of the 50 mL is still 45 minutes as he pulls anywhere from 4-15 mL each pass.  When the change to the 50 mL fill was made the the dialysate sugar concentration was a mix of 1.5 and 2.5 percent dextrose.  This was all and well for a few days, then Channing lost 30 grams over night and also looked dry.  A change to a 1.5 percent dextrose concentration was ordered yesterday, Channing is doing well with alteration of this fluid.  Going forward, even at home, this will be the norm.

The hernias mentioned in my previous post are continually evaluated and will be treated accordingly when and if they progress.  

His iron and epogen dosages have gone up due to his growth and anemia.  

His electrolytes are managed every 48 hours and are adjusted accordingly.  His feeds are always fortified with the kcal and various sodium concentrates.  

Days are still long for Vanessa and I however, every day Channing teaches his parents something new which helps us get through one day and look forward to the next.

We are at the half way mark, 50 mL, to the 100 mL fill volume the auto dialysis cycler works on; which we will go home with in the near future.  We are also slowly learning how to bathe him and change his dressings around his broviac and dialysis catheter....always remembering this is a marathon not a sprint.  Take care all!