Thursday, March 17, 2011

Charlie's story

On December 31st, 2010 our beautiful baby boy was born.   Charlie was placed on my chest and we immediately fell in love with our little man.  He was then taken from us by our fantastic nurse to do a few routine tests-- his weight, length, an initial wipe off and a rectal temperature.  It was when they went to check his rectal temperature that they noticed there was no anal opening (or butthole, as we like to say). It was then that the NICU doctor told us that Charlie would need surgery and this hospital was not capable of doing that type of pediatric surgery.  An xray was performed minutes later and it was found that not only was his anus not open, the lower portion of his bowel was underdeveloped and he would need a colostomy.  His birth defect was called Imperforate Anus.    I call this day the best and worst day of my life all at once.  It was the best because Charlie came in to our lives, but no new Mom and Dad wants to hear that their baby will need to be transferred to another hospital for a higher level of NICU care within 45 minutes of delivery and will need surgery in the next 24 hours.  Needless to say, we were a mess!  The idea of surgery on a 1 day old baby was extremely frightening. 

Luckily, we were very fortunate to live close to Johns Hopkins Hospital, and our baby was going to be taken care of and operated on by the best of the best doctors and surgeons.  Our surgeon kept telling us, "You have a normal baby who will poop from a different place for a year."  We appreciated him putting it this way.  It reminded us that in the grand scheme of things, we are very fortunate and things really could be much worse.

Charlie had surgery when he was 1 day old and things went just as expected.  He did awesome!  We spent a total of 3 days in the NICU and then an additional 2 days on a pediatric surgical floor.  While there, we had excellent education by the nurses in teaching us how to care for the colostomy and change the bag.  While in the hospital, we changed the bag under a nurse's observation and felt very comfortable with taking care of it at home.  We did not have any problems taking care of it while there. 

It was when we came home that the problems started.  The bag did not seem to adhere to his skin.  There were numerous days when we had to change the bag 6-8 times in 24 hours (we were told one bag should last 1-3 days).  As a result of changing the bag so often, Charlie's skin around his stoma began to get very red and irritated, followed by skin breakdown.  Because there was so much poop getting underneath the wafer, he then developed a rash that was decided to be a yeast infection.  Once the yeast started, it was time to start him on Nyastatin powder.  The powder cleared up the rash, but made it even more difficult for the wafer to stick to his skin.  Changing the colostomy bag was our biggest source of stress when we arrived home.  It was not a one person job, had numerous steps that often had to be re-started due to continuous poop coming out, accompanied by a kicking and screaming infant.  It was hell!  To make things even more frustrating, we had been told by several people that we were doing everything right ,and they didn't know why it wasn't sticking to his skin.

One day, the bag had been leaking while I was home by myself with Charlie.  As mentioned, changing the bag was not a one person job and I improvised and wrapped an additional diaper around him horizontally.  To make a long story short, this seemed to work well and I spoke with the surgical Nurse Practitioner who gave us the "ok" on continuing to use an additional diaper on him instead of the colostomy bag.  She gave us some skin care suggestions, and ever since his skin has never looked better and our stress level is so much improved!!  We couldn't be happier and want to share what worked for us with others. 

First, during the day we change his diaper(s) every 2-3 hours.  With each diaper change, we wipe the skin around the stoma with  Pampers Sensitive wipes.  We let that area dry and then apply the topical Nystatin powder, followed by Sensi-care barrier cream (fantastic product!) all around the stoma and apply it extra thick to the side where his poop comes out.  The Nystatin power step is only necessary if a yeast infection is suspected.  Every time we stop using the powder, the red bumps come back so we have just kept using it and the doctors are ok with that.  At night time, we apply the Cavilion No Sting Barrier wipe over the powder.  We only do this at night to cut down on the cost since one wipe can be used per change.  We then apply Vaseline (or Petroleum Jelly) over the barrier cream (again, very thick).  Then, we use a Pampers Sensitive diaper and wrap it around  him horizontally, soft side against the stoma.  Then, we apply a regular diaper on him to catch his pee.  The disadvantages of our method are mainly cost.  We use twice the amount of diapers and some of the products are not cheap.  However, the advantages definitely outweigh the disadvantages.  This can be a one person job.  Charlie's skin has never looked better and we have our sanity back!  Our other tip that we feel has made a big difference for us is Charlie's "naked time" every night.  It is part of our nightly bedtime routine, where Charlie lays on the floor naked and we let his skin air out.  We try to have him lay on the floor naked for 15-25 minutes every night.

Charlie will have 2 more surgeries this year.  His final surgery will be the reversal of the colostomy.  We hope that our method continues to work well for us, and hope this will help others who may have the same problems.