Over the weekend Hayden threw up 9 times. Five or six times would be normal for him, but 9 times is concerning. Of course the first thing that always pops into my mind when his vomiting increases is that something may be wrong with his shunt. However, it just didn't seem like that was the case. I watched him closely to see if I could find a trigger. Position changes triggered vomiting in him last April when his shunt was occluded by scar tissue in his abdomen. Nothing really seemed to trigger an episode. The only thing I noticed was that most of his vomiting happened sixty to thirty minutes before his next feed. What concerned me about this was that about half of his last feed was coming up. When he is only taking 5 ounces at time, losing half of it is not a good thing. The other thing that concerned me was that he was now vomiting early in the morning while he was still on his feeding pump. It was set at a volume he had been at for weeks and had tolerated just fine. Why is he not tolerating it now?
It was a long weekend of comforting him and constantly washing the blankets and clothes he had just soiled. Poor Nicholas. Just when he and I were playing, we'd have to stop and take care of Hayden. The bright side of it for him was that he got to help mommy with the laundry. If I try to do the laundry without him, boy does he get upset. He really is a good helper. Laundry takes three times longer, but it's fun to watch him and it is something we can do together.
Monday morning I called his GI doc's office to see if we could try switching him to a different food that he could digest faster since he can't be on Reglan (a medicine that is supposed to assist in moving food through the digestive system faster), because of his epilepsy. When his nurse called us back, he told me to call the pediatrician's office to rule out a virus. I explained that he wasn't sick and I was just wondering if there was something else we could do to try to at least make his vomiting more comfortable if there is no way to reduce it. He has a lot of thick mucus in his vomit that is at least as thick as egg whites. Sometimes it is so thick that he struggles to get it up. Often, he retches 3 or 4 times because it is just too thick to come up. It eventually comes up shortly after a feed a few hours later. The food must make it easier to get up. While waiting for him to call back, the pediatrician's office called back. The nurse there mentioned that sometimes reflux actually gets worse as kids get older and that a fundoplication (surgery to wrap part of the stomach around the espohagus to prevent vomiting) was still an option. I explained that was not an option for us until we try other things to help out such as a different food that Hayden can digest faster. Since that is more of the GI doc's area, the pediatrician's office deferred to him. I was surprised and thankful that no one made me rush home from work to get Hayden and take him to the hospital for a shunt series to make sure his shunt was working the way it is supposed to. I think they must know that if I really thought it could be the shunt in any way, I would have called the neurologist's or neurosurgeon's office first.
When the GI doc's office called back, I was told that he really didn't want to change Hayden's food and that Pediasure is the best thing for him. However, he would like to see us in the office to discuss. The earliest appointment is 9/28/09, so we took that. I am fine with trying other things, but a fundoplication and changing his g tube to a j tube (bypassing his stomach and putting the food directly into his intestine which requires being fed by a pump 24 hours a day) are not options for us at this time. I'm still confused why we can't just try a different food. There a many medical foods out there that are designed for this purpose. Guess we'll find out why in a couple of weeks. All we can do until then is to try to change the volume and/or time between feeding to try to decrease the vomiting. We decreased the volume on his pump per hour by 1ml and that has helped some. It looks like we may have to decrease it by one more. Hayden has worked so hard to come this far. Being forced to decrease his feeds is just so frustrating. The NICU was all about taking one step forward just to turn around and take three or four steps back. It was heartbreaking then, but I think it is even more heartbreaking now. In the NICU that is normal and expected. You just aren't prepared for it after you take your precious child home.
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