Brayden is in the hospital again. Again, it is a waiting game. We are waiting for him to be scoped to see if there is any explanation as to why his stomach is not digesting. The vomiting has been happening the past several weeks again and again.
Again, we do not have any easy answers. Again, we have doctors, nurses, med students asking tons of questions.
Again, we wait.
Below are our emails leading up to this adventure.
Well, I thought this summer was going to be pretty smooth and uneventful…I was wrong. Brayden needed to shake things up.
He is 16 ½ months old. He is still struggling with seizures and that is just going to be part of his life. But the seizures are not why I am writing this update. It is about the vomiting, it has been all about the vomiting this summer. Since the hospital stay, the vomiting has decreased in frequency but it is still happening. Every morning he vomits. I have to wash his sheets, crib bumper, mattress and him. Thankfully he loves the bath. The past week he has been vomiting 2-3 times day. We continually adjust the amount of food he gets through the G-tube to see if we can find a happy place where there is no vomit…We have not found that place.
Just to give you an idea of his feedings (30 ml = 1 ounce)
8 p.m. – 7 a.m. continuous feed, 11 hours he is hooked up to the feeding pump getting 35 ml per hour
10:30 a.m., feeding pump - hooked up for 1 hour and getting 50-75 ml
2:00 p.m., feeding pump – hooked up for 1 hour and getting 50-75 ml
5:30 p.m., feeding pump – hooked up for 1 hour and getting 50-75 ml
If you add all of this up, he is not getting enough calories, several hundred less than he should be getting. He is really under weight for his age; did not make the growth curve for his last check up.
Brayden has been doing wonderful with spoon feeding. We are able to get about half of a small baby food jar in him (not on him). This helps with him getting additional nutrition. We try to spoon feed him 2x a day, some where between the tube feedings and vomiting (FYI when yogurt is vomited, it is the smellist thing ever, I do not wish that on anyone).
We talked with the doctor this past week and we are going to add a high calorie powder, DuoCal, to his feeds. This will help get a little more in him, not enough but more. Over the next couple of weeks we will be trying to figure out what to do and hoping to see the GI specialist at Children’s.
A new thing to add to Brayden’s list, no sweating. Brayden does not, in any way, perspire. This summer we discovered that in the heat, Brayden does not sweat/perspire. Any one with little ones knows that the summer time and car seats makes a child sweat. Their little backs are usually damp with perspiration from sitting in the car seat even if the air conditioning is cranked. Jeremy and I have been watching Brayden the past month to see what happens when Brayden gets hot. Well, he gets hot, red and hot to the touch. He gets a fever but no perspiring. It seems as though Brayden’s body does not know how to control his body temperature.
This answers why Brayden’s hands and feet would be red and swell during the cold weather. During the winter, Brayden’s hands and feet would be red and extremely swollen. It seems as though his body would overcompensate for his hands and feet being cold and pump and pump blood to them making them red and swollen. Since we have had warm weather it has not happened once.
We just started talking with the doctors about controlling his body temperature and have no idea where this may or may not lead. Just another thing to add to Brayden's ever growing list.
Ok, that was the heavy stuff. Now some good things about Brayden. He is developing in his own way. Smiles are coming more often. He is a people person. He likes for people to be around, especially his brothers. He is doing really well with therapies. He is relaxing his tight body and trying to discover that his has two sides and a bottom half. He little hands work hard to discover things around him and trying to make a somewhat coordinated effort. Brayden is easy going and seems to continually surprise us with things he can tolerate (vacations, parks, his brothers, etc.).
We are turning the corner into Fall and starting new routines and activities for everyone in the family. Please pray for us as we try to juggle school, activities, doctor visits and therapies. Please pray that we can find a solution to Brayden’s vomiting and body temperature issues.
This week has been a rough week in our house. Brayden has not been keeping much food down. All of his food is through his G-tube. When we try to spoon feed him, it seems to come up as well.
Basically Brayden's stomach does not seem to empty very fast as a result we can not give him much food. The quantity is about half of what he should be getting. Even if we change formulas and change things around it still would not be enough change because of how slow his stomach empties. The GI doctor wants Brayden to be hooked up to the feeding pump for 22 hours a day and getting a very slow drip hoping that we can get some food in him. If we cannot make this work in the next few days. Brayden will be admitted and possibly getting a J-tube. The J-tube goes directly into the intestine and bypasses the stomach completely. Even if Brayden gets the J-tube he would have to be hooked up for something like 18 hours per day to get enough food since it is not holding it like a stomach would.
For the next few days we are trying to get the vomiting under control and get enough calories in him. The GI doctor gave us a prescription for Reglan. Reglan is supposed to help with gastric emptying but is known to have neurological side effects. I told him that I did not like the drug and was against it. The doctor found that it is one of the last options. I am waiting to hear from the neurologist about the medication. I am not going to give it to him until I hear something about it.
I want to ask anyone and everyone about Reglan and a J-tube. If anyone knows anything about Reglan please email me. Also if anyone knows much about a J-tube please email me. I do not know anyone who has a J-tube.
It seems as though we will need to be making a decision in the next few days.
We have been laying low this weekend partly because of the weather and mostly because of Brayden. We have been trying the 22 hours continuous feed and Reglan (with the okay from the neurologist). Things are looking a little better but still vomiting. After at 3:00 a.m. giant vomit, bath, change of clothes and bedding, we decided we cannot delay the J-tube any longer. It seems that this is the best option for Brayden right now.
We are heading into Children's of Washington DC this afternoon and will probably be there at least a few days. We are not sure yet about the details.
Thank you to everyone to passed on our plea for help and information. We received tons of emails, of which I will respond to at some point. We received emails for doctors, therapists, parents with disabled children and people just offering support and prayers. Thank you for taking the time to send us all of the information. It was extremely helpful and helps me feel more informed about this next step.