In a few short hours, Brian and I will board a plane for Philadelphia. For months I have been planning for this trip – organizing appointments, discussing medical history, begging for answers.
It has been a roller coaster of ups and downs since I wrote last.
Brian and daddy
For instance, Brian’s endocrinologist decided to close her doors. Since returning from Philly, I have found this particular doctor to be one of the few who championed for Brian. She educated other doctor’s during hospital stays, listened to my questions and concerns, and seemed to put Brian’s well-being first. I was devastated when I received the text message (yes, they notified via text and email) that they would no longer be seeing patients. The idea of finding another endocrinologist seemed like an uphill battle I was not ready to tackle, and in some ways it was.
During the many conversations with nurses at the Children’s Hospital of Philadelphia, I was instructed that with Brian’s irregular blood sugar history, I needed to find a new endocrinologist and see this new doctor before arriving in Philadelphia. This task was easier said than done, since all of his endocrinologist’s patients were bombarding the same group of suggested doctors looking for appointments.
After my many difficult experiences with Phoenix Children’s Hospital, I tried my best to steer clear of their department and instead reached out to a doctor with a private practice. His nurse was very kind and although he was booked for months out, she felt we were a priority and promised to speak to the doctor. The next day I received a call from her with disappointing news. According to the doctor, Brian was too “difficult and complicated” a patient and I needed to find a doctor directly linked to a hospital and a team of specialists. I’m not sure how I should feel to know that my kid is too much for a licensed doctor to treat.
I broke down and decided to call the recommended doctor associated with Banner Children’s Hospital. While I am not thrilled with Banner, Brian’s local gastroenterologist is associated with them, which meant the main medical history and information would be in their database already. Although I did not have high hopes, I was beyond grateful when the receptionist told me she could fit me in on Tuesday, April 18, the day before we left.
Planning a trip with a small child is a special kind of hell at times, but when your child comes with a suitcase full of medical supplies, it can be a time-consuming and exhausting process, but I was not about to let this small blessing slip by me and graciously took the appointment. I believe God has a hand in the biggest struggles and this appointment turned out to be a blessing. While discussing Brian’s medical history and medication dosage, his new endocrinologist commented that Brian has only grown a quarter of an inch since December, and he felt it was best to increase his dosage. I explained that while the medication is concentrated for a “pen,” we use an insulin needle because it can be administered faster. After working the math problem forwards and backwards multiple times, it became overwhelming evident that we had a problem. For the past nine months, Brian was receiving 1/7 of the dose he needed to maintain his blood sugar and GROW. We had been instructed by the previous nurse to give Brian 5ml every night, but in reality, the dosage conversion showed Brian should have been receiving 36ml every night.
Brian and his “girlfriend” Pippa.
I know doctors are not perfect. They are human and make mistakes. This mathematical error was a mistake, but a mistake that was taking its toll on Brian’s well-being. Suddenly the events of the past months began to make sense. Brian would wake up in the morning with low sugar and it confused me since he wasn’t sick. His sugar would fall drastically during the day or when a fever struck. His tantrums increased and at times he appeared to be possessed – sweet one second and violent the next. According to his new doctor, Dr. Hahnke, the wrong dosage could be the explanation.
Last night I administered the first CORRECT dosage and it shocked me to see how much medication I had to push into his small leg. He took the shot like a champ and promptly replied, “That didn’t hurt.” Now I sit and cautiously hope the medication will do its job and things may settle down.
With his appointment out-of-the-way, I relayed the information to the nurse at CHOP and it was decided that since Brian’s body will need time to adjust, it was best for Brian to be admitted into the hospital Sunday afternoon in preparation for his colonoscopy and endoscopy on Monday morning.
Most parents want to avoid having a child in the hospital, but I see it as a blessing. The nurses, endocrinologist team and doctors will be able to monitor his blood sugar during his “clean out.” They will make sure he has fluids and take a huge weight off of my shoulders. Also, after speaking with the nurse, I will try my best to see if another specialist might be able to check on him. The nurse asked if he has seen a rheumatologist, immunologist or oncologist. I told her no but would love to have one of the first two as consults. The last thing I want to think about is needing an oncologist.
This extra concern stems from the ups and downs we have experienced the past few months. Below are a list of things that have happened with no explanation:
- Low blood sugar after eating (now attributed to wrong dosage)
- Bloody noses without cause (nostrils are not dry and he wasn’t picking his nose) – This includes waking up with blood all over the sheets or drops falling while he watches cartoons.
- High fevers without any other symptoms and they do not respond to medication
- Bruising easily
- No bone growth – x-rays taken one year a part show Brian’s bone age to be that of a two-year old. Although he is taller, it does not appear the density of his bones is changing. This could be due to the lack of calcium (his formula is meant for infancy, not forever) or the wrong growth hormone dosage. His allergist told us to be prepared for Brian to have osteoporosis at a young age.
- His face is paler than the rest of his body.
- Difficulty sleeping
- Blood in his stools
- Weird welts on his body – at first they appear to be bug bites, but over a couple days the color, size and texture changes to look like something I have not seen.
- Overheating – after playing outside for ten minutes, Brian overheats and has trouble cooling back down. The same happens when he sleeps. It appears he has difficulty maintaining his body temperature, which may explain his extreme dislike of wearing clothes.
- Peeling of his palms and feet, leaving his fingertips and toes raw.
Perhaps some may think I am overreacting to some of the items listed above, and maybe I am. My gut is telling me that we have missed something. There is a bigger issue at hand and no one has been able to catch the culprit. Maybe there is an autoimmune disease causing his poor body to react to everything and anything. Maybe there is an immunological condition we are not aware of just yet. Whatever the case, I want answers. I do not want anything to be overlooked.
Day to day life is not always easy. We cry, we argue, we laugh, we fall down, we start over a hundred different times, but we NEVER give up. My last post talked about the struggles I have had dealing with life. Those struggles are a day-to-day battle for me, but I have no problem placing them on the back burner when it comes to my child. I will not stop till we have all the answers. I want my child to live a normal life. I want to not have to worry about medical expenses. I want to be rich so I can travel to Philly every couple of months and deal primarily with doctors I have grown to trust and respect. I want my baby to be healthy.
He was concentrating so hard!
While I prepare for the days ahead, I am excited to see friends and family. I made sure to schedule the trip so I could enjoy TWO nights of prime rib at the FOP. I cannot wait to hug my second family, my east coast support system, tomorrow night when we arrive at the FOP for dinner. In their protective embrace, I will have a chance to breathe. Until I wrote these words, I didn’t realize how much I need them. I will visit with family and remember how blessed we are to have so many pulling for us. I have not forgotten everything my family and friends have done for us, and try as I might, I’m not sure I will be able to repay them.
As much as I hate to admit it, I have lost control. I am now along for the ride and like the song says, “Jesus, take the wheel, because I cannot do this on my own.” I look forward to the insights this trip will bring. The team of doctors we have at CHOP are the best and I know they will find an answer.
Now I will mentally prep for an overnight flight, multiple doctors’ appointments, a hospital stay and days spent with my sweet little man. Through all the struggles, his smiles, kisses and hugs are all that matter in this world.
Brian cannot eat anything at Chuck E Cheese, but he loves the games and dancing with Chuckie!
I’ll see you in the morning, Philly.