The past three weeks have involved a roller coaster of emotions.
To begin, Brian developed a cough that turned into a high fever. I spent an entire day holding him while he slept off and on. On Thursday, January 21, he awoke early with a bloody nose. Matt was able to get him back to sleep with me before leaving for work. He woke again shortly after Addi left for school. He was warm, so I put him in the bathtub, where he had another bloody nose. I decided to check his blood sugar and it was 54. I gave him some fruit snacks, which he promptly threw up, and took it again fifteen minutes later to find it at 45.
I called his pediatrician, knowing that I would have to take him to the emergency room, but also wanting him to call ahead and order blood work (a recent blood test showed that Brian is borderline anemic). Of course he directed me to go to the hospital stating that Brian needed fluids immediately to bring his sugar up.
The hospital confirmed a low blood sugar (44) and began giving him dextrose. They also ordered a chest x-ray to rule out an upper respiratory issue and gave him a breathing treatment to counteract the retraction he was experiencing in his chest (X-ray was clean).
I really believed that after some dextrose he would be able to return home.
The doctor came into his room and said it was unsafe to send him home, but that the hospital was not equipped with a Pediatric ICU, and she wanted to have him transferred to another hospital. She gave me a few options, and I decided to take Brian back to the hospital where he was born, Scottsdale Shea. I was familiar with the NICU there, and I hoped the PICU would be just as great.
Since Brian’s sugars were unstable, the doctor would not allow him to be taken off of the fluids. An ambulance transport was called, and I felt like I was living every mother’s worst fear as they loaded him onto a stretcher and into the back of the ambulance.
Brian was perfect for the entire ride and didn’t fight them even once.
We were delivered to the PICU at Scottsdale Shea, where he was hooked up to more monitors and fluids. The intake doctor spoke with me about Brian’s history and said he would contact Brian’s endocrinologist for further details.
Long story short, Brian remained in the hospital for a week. Even with dextrose, his sugars kept falling, and after an MRI to rule out a tumor or cyst on his pituitary gland (neither were found), he fell to 44, and that was with a constant flow of dextrose.
The doctors seemed baffled by the situation, and eventually agreed that Brian would not be able to stabilize his sugars on his own until he was started on a growth hormone.
We were released from the hospital on a Wednesday evening, and I decided to wait until Thursday night to torture Brian with his first dose of growth hormone.
My sweet boy never ceases to amaze me.
He took that first injection, and every one since like a true champ.
We met with his endocrinologist the day after his first dose, and she informed me that Brian would need to be on the growth hormone until he “stopped growing.” After that point, he would be removed for a few months to see if his body could maintain the appropriate levels. She feels, based on his blood work, that he will need to continue a growth hormone dose for the rest of his life.
My mind flashed with what this means for our family. It may sound silly, but I imagined a future without date nights or vacations away from the kids. I know I am being selfish, but it came from a good place. Giving a shot each night, even though it is a tiny needle and is not painful to Brian, is not an easy task, and I cannot ask anyone else to be responsible for administering it.
The doctor assured me I could alter the schedule and educated me on what to do if a dose was missed. It all sounds so simple. I just wish I didn’t have to put Brian through it every night.
Now that Brian has been on the hormone for a whole week, I am blown away by the difference in him. He is happier, more energetic, and only seems to have a tantrum when he is tired. It really makes me wonder how many times we thought he was just being bratty, when really he was suffering from low blood sugar.
The doctors are hopeful that the hormone will increase Brian’s appetite. It hasn’t happened yet, which is why the possibility of a feeding tube still hangs over our heads. Brian has not gained weight in almost a year, and being in the hospital again only caused his weight to drop. I will know just how real the possibility is by the end of the week.
Today, Brian and I boarded a plane for Philadelphia. He will undergo his fifth endoscopy on Monday morning. By Thursday the doctors will be able to tell me if Brian is allergic to potatoes or lima beans, and then we will start the process all over again with two new foods. Hopefully we will find a meat that is safe to try. Even more importantly, I hope that potatoes are safe. This kid has LIVED on potatoes in every form the past couple months. I do not think lima beans will make it past this round, only because they seem to be causing a FPIES reaction, but time will tell.
I’m excited to see the family and friends we left less than three months ago, and I pray that his appointments go well. It is amazing how easily I fell back into the rhythm once we left the airport. I feel like I know parts of this city as well as I know Phoenix, and that is comforting beyond belief.
Tonight I hope Brian goes to bed early, because I am beat. His newfound energy is exhausting and exhilarating at the same time. We have a lot to accomplish before heading home on Friday, and I hope I will be reporting back with good news for all.