We are just a couple days shy from a week post surgery and Brian is doing fantastic! He has felt so good that I am a nervous wreck!
As soon as the anesthesia wore off, Brian was like his usual self. It made me realize that he has been in some kind of pain for so long, that even cutting the skin of his stomach and stitching it felt better than having the tube. I practically beg Brian every day to stay calm and just sit down. The only time this seemed to work was when he was building Lego sets…thank goodness, but otherwise, keeping him calm is an impossible battle.
The human body is an amazing thing and I cannot believe how quickly the hole where the feeding tube was has closed. In fact, the entire surgical site looks great and with each day that passes, I am hopeful we will avoid infection.
That may be wishful thinking though since Brian will return to school tomorrow. He will not be allowed to play at recess or participate during PE, but at least he will be back with his friends. This will be a challenge, but there is an end in sight. As long as I can keep him somewhat careful over the next two weeks, then on September 10, after the stitches are removed, he can return to life as normal.
I’ve been asked a few times over the last week if Brian having the tube removed means he now can eat all types of food. Sadly, this is not the case. Brian still suffers from Eosinophilic Esophagitis and regular food allergies. Right now there are nine foods that are considered “safe” for Brian to eat. Having the tube removed just means that we have to be extra diligent about his shakes and the amount of food he eats each day. The tube was placed initially because Brian was on a “shake strike.” He refused to drink his shakes, which are made from a high caloric and nutrient based hypoallergenic formula. He was losing weight because the safe foods at the time did not provide enough calories to help his body grow. Thankfully, these days he will drink at least two shakes a day by mouth, so the tube was not being used.
Now that the tube and growth have been dealt with, I will focus my attention on the other issues facing my little man.
Brian’s GI doctor put us on a strict regimen of shakes and regular food to see if he would grow. During this period, Brian was taking in over 2,000 calories a day. Plus, this was last school year when we kept the kids at home for school based on doctor recommendations. Brian was taking in more than an average adult should and was not very active, since he did not have PE or recess to burn his energy up. In fact, Brian was stagnant for the most part and based on his activity and diet, he should be as wide as he is tall. Instead, he did not gain a single pound. Also during that time, he did not show any growth in his height, either. We know he was getting enough calories and nutrients, but for some reason he isn’t growing.
GI recommended I meet with endocrinology again. After listing to the history and ordering a battery of tests, the doctor pointed out that Brian’s lymph nodes are swollen. She said that inflammation in the body could decrease Brian’s growth hormone. When the test results came in, the bloodwork looked fine, but the x-ray of Brian’s bones showed that he is about 28 months behind where he should be. Essentially, my almost nine year old has the bones of a six year old.
Now I am lined up with so many different appointments that my head is spinning. First stop will be to the pediatrician to see if he has any insight, and then on to an immunologist. We will meet with the endocrinologist again in a couple months to see if anything was determined, and if not, then she will order more tests. Ultimately they are trying to determine why Brian does not seem to be absorbing what he eats.
While we struggle to figure out why Brian isn’t growing, we also are in a holding pattern when it comes to trying new foods. Last October, Brian developed a sort of tic after an endoscopy. He would make a continual noise in his throat throughout the day. We saw multiple doctors and none of them had any answers. Tests showed nothing wrong with his throat or esophagus, but GI did find irritation in his stomach lining. First we tried an acid reducer but nothing changed. Next up was a slurry made up of budesonide and Splenda. Brian did a fantastic job drinking it twice a day, but it didn’t stop the tic, and eventually Brian’s throat began to react to the mixture. We stopped the slurry, repeated an upper GI and found that nothing had changed. Finally, when we removed oatmeal that did not specify itself as “gluten free,” the tic stopped, but the irritation in the stomach remained. Brian now takes omeprazole twice a day and we are hopeful that a repeat upper GI will show that the irritation in his stomach is gone. If it isn’t, I’m not sure what the next step will be. Until then, we are not trying any new foods. It is frustrating, but we understand the rationale and are hopeful for answers.
This past week has been exhausting. The first couple nights brought pain in the middle of the night for my sweet boy, but by Friday he was sleeping through the night. Not being able to be with Brian in the days following surgery was hard for me and left me a scattered brain mess at work. I am so grateful to family, neighbors, friends and coworkers who checked in, sent food, or let me vent. I’ve always said we have the best village, and once again you have come through for us.
Thank you for all of the prayers and well wishes. My mom said Brian is just like his Papa…not a victim and never surrenders. His strength amazes me every day. I don’t know many children who could handle the life he leads as well as he does. Hopefully that never changes. In the meantime, thank you for joining us on this journey.
Now I ask for prayers that we make it through these next two weeks without ripping out a stitch!