The end of this month marks the four year anniversary of Brian’s first scope and the end of life as we once knew it. Suddenly our little one year old went from a child with food allergies, to a child who would spend the next four years in and out of countless doctor appointments and hospitals.
It sucks. There is not a more poetic word to use, either. For four years Matt and I have fought for the best possible care for our little man. We fought away the “worst case scenarios,” that is, until this week.
It is official, Brian needs a feeding tube.
The past few months we have endured an epic struggle with Brian over his formula. He doesn’t want it, and basically outright refuses it. The problem is, his formula makes up around 90% of his caloric intake. Without the calories and nutrition the formula offers, we are rolling down a hill of potential danger. Brian’s weight has been a concern from the very beginning. Once we managed to get him “on the scale,” the last thing I wanted was for him to fall off. When we first met with his allergist early this past summer, we were hopeful Brian would tolerate pork and peanuts. If he could incorporate those two things into his daily diet, then we would be able to hold off on a feeding tube.
We cautiously began his pork regimen, which ended up equaling three pork chops a day. That is a lot for any person, but in Brian’s, case, it may have been too much for his poor body. From the very beginning we noticed a change in his bowel habits and digestion. Honestly, my little guy stinks. I mean grown man farts emit from his tiny body. I don’t know how he does it, but it is directly attributed to the amount of pork he eats. It was pretty clear that pork was not going to work out for us, but we were hesitant to remove it because it was helping to keep him full and adding calories to his day. Also, we hoped it was the amount upsetting him and everything would work out somehow.
The doctors insisted, rightfully so, to test peanuts in office under a watchful eye. After three hours and various amounts of peanut butter, the green light was given to continue with peanuts. Brian looked and sounded just fine. The next morning was a different story. Brian’s voice was gone…think screaming at a concert all night gone…and was painful for him to try to speak. I called the doctor and was told to remove peanuts immediately.
Fast forward to September…peanuts are a no-go and pork is causing a serious digestion issue. We had a trip scheduled for Philadelphia the beginning of October, so I began the process of calling the doctors and arranging the many appointments. I put in the request for a scope and waited…and waited…and waited. Giving the scheduling team the benefit of the doubt, I waited as long as I could before calling the office again. Finally I heard from Brian’s allergist at CHOP, who said that due to the description of Brian’s digestive issues, it was obvious pork is out and that they did not see cause to put him through a scope. I mentioned that the possibility of a feeding tube had been addressed and that his doctor in Phoenix felt it should be done during the scope back east. This led to more questions. I asked if there was a way to determine if Brian truly was allergic to pork or if he was just eating too much for his body to handle. She told me she would be in touch soon with the answers. So I waited…and waited…and waited. I sent a follow-up email to the nutritionist at CHOP hoping for more answers because time was running out for me to schedule additional appointments. Matt and I were faced with the decision to either go ahead with the trip, even though chances were slim I could see all the specialists, or canceling the trip till after the first of the year.
This most recent experience was very uncharacteristic of CHOP. No matter how I tried, I could not get a straight answer on the plan of action. Matt and I were forced to make a decision. Money is tight and we could not afford a trip to Philadelphia if I was not packing it with appointments. We decided to cancel the trip with the hope of rescheduling it for next spring. Luckily, the rental car I paid up front for was kind enough to refund me all but $20 of the total.
Unsure of our next step, I called the allergist in Phoenix last week and asked for guidance. Monday’s call confirmed my fear… The allergist requested that I move up our October 30 appointment to October 5 and asked me to call a pediatric surgeon and schedule an appointment as soon as possible.
After researching and trusting the opinion of a friend, I called an office at 4p.m. on Monday afternoon and was shocked when they said we could come in the very next day. This surgeon came highly recommended and it didn’t hurt that he is a graduate of the University of Notre Dame. There was only one problem in my eyes…his offices are located at Phoenix Children’s Hospital.
When I entered the hospital for the appointment yesterday, I almost expected to hear a choir of angels singing “Hypocrite.” I swore off this hospital and I have not been silent about my dislike of the staff there. But, I trust my friend, and I trust that this doctor will be able to help us. Plus, I made it very clear to him how I felt about the hospital and he agreed to do the surgery at Scottsdale Shea. Since we have experience there in the NICU and PICU, Matt and I are confident with this solution.
This kind surgeon went over all of the information with me regarding a tube placement. He listened to my concerns and Brian’s past medical history. He decided the best course would be to admit Brian into the hospital the day before for monitoring, perform the surgery, and then keep him at least two more days as long as there were no complications. During his time in the hospital, I would be taught all things feeding tube related.
Before surgery can be performed, the doctor needed an upper GI with contrast, which is scheduled for October 13. After that, it will depend on the schedulers and insurance approvals to set a final date. Matt and I signed Brian up for t-ball in the hopes he may make a friend or two, and we hate the thought of cutting this experience short. T-ball began only a week ago and lasts until November 18. Thankfully, the surgeon does not feel we are in a dire situation yet and should be okay to wait till t-ball ends, especially since he will not be allowed to play sports for four weeks post surgery. If an emergency situation should arrive, we agreed a nasal feeding tube could be placed as a temporary measure. Until I hear from the scheduler, I sit in limbo.
Tomorrow I will meet with Brian’s allergist and we will discuss the amount of formula Brian needs in a twenty-four hour cycle through the feeding tube. We also will attempt to find a new food for Brian to trial. The possibility of a feeding tube always existed somewhere on the horizon, but now it seems to be coming towards us like a tornado and I find myself trying to see the positive in the whole situation.
First off, for anyone wondering, the decision to place a button in Brian’s stomach instead of using his nose is a simple one. Brian suffers from chronic nosebleeds, which have a tendency to last ten to fifteen minutes. Less than a month ago I removed two very large and long clots from his nostrils. In all honesty, I thought it was a worm. I had never seen a clot like that, and now Brian enjoys showing the picture of said clot to anyone and everyone. Also, we want Brian to live as normal a life as possible. It is hard enough to keep him from things so many other kids enjoy. I do not want him to have to deal with a tube hanging from his nose. Of course, some of these concerns may be just on me. I know I have a tendency to over think things and worry too much. I just want what is best for my tiny human.
Secondly, a feeding tube is not a bad thing. We have been so concerned about Brian’s weight, and now it won’t be hanging over our heads. Instead, we can focus on finding him more foods and eventually eliminating tube feedings. As another perk, Brian may feel full for the first time in a very long time. Also, I will be able to administer medication through the tube whenever he becomes ill (he had cellulitis TWICE in less than a month, which required a nasty medication). Now I will not have to fight him to take medicine.
As we wait for more answers and a surgery date, I continue to educate myself on life as a feeding tube mom. For those who know me, it will come as no surprise that I have started a list of essential items I will need. I know that knowledge is the best course of action and I will continue to be as proactive as possible. This isn’t easy and it will tear my heart apart to see him go through this, but Matt and I know it is for the best. We want Brian to be healthy and happy, and this plan will help to get us there.
If you would like to learn more about life with a feeding tube, please read the document below. It is packed with helpful information to better understand the journey we are about to take.
Parent Guide to Feeding Tubes
We appreciate all of you for sharing this journey with us, as well as your prayers and support. This is just another step along the way. Before we know it, things will be, as Brian says, “Awesome sauce.”