This is a question that we used to debate regularly. It is a personal decision that all short gut parents are faced with. The worst part is, there is no right answer.
When we prepared for discharge from Children's we were trained by a nurse we now call Uber nurse. She gave us an excellent training on how to care for Ellie's Central line at home. To refresh your memory a Central Venous Line (CVL) is a very small white catheter that enters Ellie's body via a vein in her chest, it snakes up to her neck and then goes under her sternum and down straight to her heart. This is how the TPN and Omegaven gets into her blood stream every night. The Uber nurse taught us how to care for the line, the entry site, the dressing that keeps this area dry and sterile, the cap that connects her IV line to the catheter and everything and anything else that might have to do with or could happen to the CVL.
The Uber Nurse incredibly knowledgeable, and has an amazing sterile technique. After a few trainings with her we started to notice when other nurses were not being as sterile as they could be, this is when we took over all of Ellie's CVL care. If we have any questions about the line we call the Uber Nurse. If we are at the hospital for clinic and they want to access Ellie's line, the Uber Nurse is the only one that we will allow to touch it.
The reason we are so careful is that if bacteria gets into the line Ellie will get the dreaded LINE INFECTION. Because the line is in her heart, that means her blood gets infected and that is never good. Ellie has had two of these in her life. She (knock on wood now) has not had one for 10 months. So whatever the Uber Nurse taught us, is working.
Now as for our dilemma. During our CVL training the Uber Nurse stressed again and again how important it is to keep the dressing and the whole area dry. When we were inpatients a few mornings a week Ellie would get a sponge bath and we would wash her hair while being very careful to not let the dressing get wet. When we got discharged we continued bathing Ellie this way. This means that Ellie has never had a real bath. She has never been able to play in the water.
After we where home for a while I started talking to other short gut parents and discovered that we were in the minority. Most short gut parents bathe their kids just like normal kids. They put a water proof dressing over the CVL dressing and then change the whole dressing after the bath. Some parents let their kids swim, go to the beach all things that we thought we would never be able to do. So when we were in for clinic the last time we went and found the Uber Nurse and picked her brain. Where we being overly protective/hydrophobic?
Her response was, "Before you decide to risk the CVL you have to consider if the child is going to have a CVL for life, how old the child is and why you want to take them to the beach, swimming pool or give them a real bath. Ellie is so young that she doesn't know what the beach, swimming pool or bath tub is, so she will not miss them. Really you would just be letting her swim in the ocean or pool to make you feel better not her. If she was older or was going to be on TPN for life it would be a different story. Right now, don't risk it, continue what you are doing. It's obviously working."
At first I was sad, no Ellie playing in the water. But, I know she will have her time in the water, the girl is going to have gills anyway from all the fish oil. Water is just in her future, not in her present. We don't know how long Ellie will be on TPN, find me in another two years and I may be tossing my CVL child into a swimming pool. But, for now we will continue putting Raffi's "Banana Phone" in the CD player and bathing Ellie on water proof chucks in the middle of her bedroom floor.
The best part of giving Ellie a bath is that I get my fix of clean baby smell. I think I could become a very rich woman if I could find a way to bottle that scent. When she sits on my lap to read her bedtime story, I can't stop my self from sniffing her hair the whole time. I have a problem, and I admit it. Oh, well.
She gets to play with the water for a while and then we lay her down with her head over the sink to wash her hair. The towel around her middle gives us a good hand hold so we can stop her from going to far when she reaches into the water. 
She has breakfast all over her face and a big snotty nose but I think she is still cute.
The Uber Nurse incredibly knowledgeable, and has an amazing sterile technique. After a few trainings with her we started to notice when other nurses were not being as sterile as they could be, this is when we took over all of Ellie's CVL care. If we have any questions about the line we call the Uber Nurse. If we are at the hospital for clinic and they want to access Ellie's line, the Uber Nurse is the only one that we will allow to touch it.
After we where home for a while I started talking to other short gut parents and discovered that we were in the minority. Most short gut parents bathe their kids just like normal kids. They put a water proof dressing over the CVL dressing and then change the whole dressing after the bath. Some parents let their kids swim, go to the beach all things that we thought we would never be able to do. So when we were in for clinic the last time we went and found the Uber Nurse and picked her brain. Where we being overly protective/hydrophobic?
At first I was sad, no Ellie playing in the water. But, I know she will have her time in the water, the girl is going to have gills anyway from all the fish oil. Water is just in her future, not in her present. We don't know how long Ellie will be on TPN, find me in another two years and I may be tossing my CVL child into a swimming pool. But, for now we will continue putting Raffi's "Banana Phone" in the CD player and bathing Ellie on water proof chucks in the middle of her bedroom floor.
The best part of giving Ellie a bath is that I get my fix of clean baby smell. I think I could become a very rich woman if I could find a way to bottle that scent. When she sits on my lap to read her bedtime story, I can't stop my self from sniffing her hair the whole time. I have a problem, and I admit it. Oh, well.
