There was a time when sitting down to update family and friends on our family was cathartic. I found comfort knowing that by sharing our experiences I would feel a little less alone. Lately, the idea of putting “pen to paper” is exhausting.
So much has happened since we left Philadelphia in May. I left angry at previous doctors and hopeful to find some answers in the coming weeks. The endocrinologist at CHOP recommended I stop giving Brian the growth hormone shots for two weeks and then have the endocrinologist in Phoenix order blood tests to confirm if the shots are necessary. Towards the end of the two weeks, Brian had a bloody nose that continued for ten minutes. The next day another one lasted six minutes. Since we still did not have an answer for Brian’s paleness, I scheduled an appointment with a hematologist. The doctor ordered blood tests, and in an effort to minimize Brian’s discomfort, I asked the endocrinologist to place additional orders so all blood work could be done at once.
Apparently, trying to minimize my son’s pain was too much to ask.
I was told I would hear from the endocrinologist if the orders were placed, but that never happened. I was under a crunch with the hematologist and was forced to take Brian in without the additional orders. The process turned into such a debacle that it left me in tears, literally.
I am partially to blame for the horrible experience, because I stupidly believed I could have Brian’s blood drawn with Addi and a one year old in tow. After signing in, we waited for almost thirty minutes before the front desk informed me that one of the tests had to be taken by courier and it would be another thirty minutes before the courier would arrive. Brian was becoming antsy, the one year old was fed up with the stroller and Addi was bored out of her mind. I was exhausted and suddenly it all became too much. I told them I couldn’t wait any longer and left. I did my best to hold it together, but by the time I reached the parking lot I lost it.
After some deep breaths and a decent night sleep, I tackled the whole process again, but this time with just Brian. We arrived, signed in, asked for a courier to be called and waited our turn. Having blood drawn is difficult when you try to hold down a very strong and stubborn four-year old, but the process ended smoothly, or so I thought. The next day I received a call saying the tech had messed up and I would need to bring Brian in to have more blood drawn. Needless to say, I was furious!
After the second draw, we received news that both tests were negative and that if the bloody noses continue, I would need to take Brian to see an ENT. Since then he has had only one other bloody nose, thankfully, but when it happens it is pretty scary.
As for the endocrinologist, it took another month, but I finally learned that orders had been placed weeks ago, but the office failed to contact me. I convinced Matt to take Brian this time and now we wait to see whether the growth hormone shots are necessary. Personally, I hope we find the proof we need, because watching Brian’s sugars go up and down is frustrating, not to mention we live in fear that if Brian becomes sick we will end up in the hospital again.
While dealing with the blood work fiasco, we also came up against a new challenge. Brian is boycotting his formula. For over three years, Brian’s formula has been 95% of his caloric intake. We have known that as long as he is drinking four to eight highly concentrated bottles a day, we could avoid a feeding tube. I made an appointment with Brian’s allergist to assess the situation and to see if a flavored formula would be possible. Thankfully, the doctor was able to fit us in quickly and we discussed all of our options.
We tried the flavored formula first, but it was sickeningly sweet (yes, I tried a sip), and Brian rejected it immediately. The doctor recommended we try pork and peanut butter as an alternative. As long as we could incorporate those two new foods, we could avoid having a feeding tube placed. If Brian reacted to one or both of the foods, and lost weight, then it would be time for a feeding tube.
We scheduled the peanut butter challenge to be done at the doctor’s office in case of a reaction. After five hours and multiple peanut butter tastes, Brian appeared to be fine. Matt was told to monitor him the rest of the day and give him more peanut butter the next day. Feeling hopeful, we tried more peanut butter the next day, but Brian was not interested. By the third day, Brian’s voice was gone and after speaking with the doctor, we realized this was a delayed reaction to the peanut butter.
Although frustrated, so far we have been successful with pork. The difficult part is finding pork that isn’t injected with additional hormones or seasonings. We have been successful with Sprouts, but the cost is difficult to bear. We try our best to keep to a budget, especially with Brian’s medical needs, but it is hard when our entire grocery budget for the month ends up purchasing pork. For the record, Brian LOVES pork and goes through it very quickly. He appears to be handling it well, but we won’t know for sure if there is a reaction until he has another endoscopy in October.
I would do anything for my children. When it comes to their health and well-being, I will spend my last penny. Still, it all can be overwhelming when trying to stay afloat financially. To make matters worse, when my body fails me, I find angry that I am the cause of more bills. I have faith that everything will work out, but sometimes I do wish I had more money, or even more so, that my son was healthy.
So while I wait to win the lottery (kidding), I will continue to do my best to ensure Brian receives every thing he needs. He has lost a few pounds, but I still hope his diet of pork, avocado, potatoes, apples and carrots will keep us away from a feeding tube. In the meantime, I anticipate a call from the endocrinologist with blood test results and prepare for another round of doctor appointments and tests in October.