Roll Over.....

It is 2 weeks ago today that Nathan had his open heart surgery for his correction of Tetralogy of Fallot. What an interesting 2 weeks to say the least! After only six days in the hospital, Nathan was released from Primary Children's. When we brought him home is when his troubles actually began. He came home on Lortab, Lasix, Aldactone, Prevacid, Tylenol, Motrin, and now Reglan. Nathan was doing great from healing from the surgery as long as his pain medicines were given in a timely fashion. On Friday we realized that he wasn't having regular bowel movements and that he needed a laxative and suppository. Poor kid! He absolutely hated both! We thought we had that under control when he started trying to vomit. Jake and I would feed him about an ounce or so through his g-tube and then he would start wretching. Since Nathan is physically unable to throw up because of his nissen, it was very sad to see him dry-heaving and then screaming at the top of his lungs in pain. It got so bad that he was only taking an ounce or two during the day. We'd give him his continous feeds at night through the pump but he would still wake up every couple of hours or so dry-heaving and crying. It was so miserable for both him and us!

Monday morning I'd had it and began worrying that since the Lasix is making Nathan drain off the excess fluid on his body that only get 1/2 of his daily fluid intake would lead to dehydration. I called the Cardiac Nurse Practitioner and explained the problem. She said to go see my pediatrician and to call her back the next day. I made an after hours appointment with Dr. Valdez in the Spanish Fork Clinic. He told me that he thought Nathan should be back on TPN so that he wouldn't get dehydrated which meant being put back in the hospital. Dr. Valdez told me to call the Cardiologist and tell him what he had said. I said I would so I called the Cardiac Nurse Practitioner again in the morning. She then transferred me to a dietician who said that we should put him on continuous feedings 20 - 24 hours a day with a higher caloric content! That didn't satisfy me so Jake called the GI surgeon's nurse practitioner to see what she thought. She said they would really just worry if Nathan didn't look well perfused. She did say if we thought it was serious to go to the emergency room. I got mad and decided that since Nathan already had a nissen that he must need to be seen by a GI doctor to figure out what is causing his tummy problems. I called the GI clinic only to be told that I needed a referral from Dr. Downey (the surgeon who placed the g-tube and nissen) or the pediatrician. I was so upset at the point! I had a baby who was wailing and I couldn't get any help. At 5:00 yesterday evening, the Cardiac Nurse Practitioner called to "check in" on Nathan. I told her what had happened and she said to get an appointment with my pediatrician and get a referral for a GI specialist. She was about as much help as a stone wall! Jake and I saw Dr. Bennett on Wednesday and we did get a referral for the specialist. We have had a little better luck with Nathan tolerating his feedings. Dr. Bennett decided to let Nathan have 20 calorie formula to see if he would tolerate it better. I'm trying that tonight to see if that helps at all.

Nathan has too many specialists: Cardiologist, Cardio-Thorathic surgeon, ENT,GI Surgeon, Plastic Surgeon, a Dietician, and now hopefully a GI doctor. What I have found is that these people are so specialized that they won't hardly talk to each other! What has the medical community come to?

The bright spot in all of this is that Tuesday afternoon, June 16th, Nathan was lying flat on his back on the floor during one of his pump feedings. He got bored and decided Elisabeth was much more interesting than his fingers. He kicked himself up onto his side to look at her. Not bad for a kid with almost no real tummy muscles to speak of and just having major heart surgery a week and a half earlier! I'm hoping that this surgery is the beginning of many more major improvements for Nathan.