The last three weeks have been full of ups and downs, and full on attacks.
It seems like forever, but really it was only three weeks ago that we last met with Brian’s allergist for another round of skin tests and blood work. The second set of skin tests confirmed an allergy to beef, tuna and corn, and the blood work confirmed his allergy to milk.
I left that appointment with the plan to feed Brian apples, pears and carrots over the next six weeks to prepare for his follow-up endoscopy on November 6.
I was fortunate to have my mom come visit for my birthday. It rained non-stop for a few days while she was here, but luckily we were graced with a beautiful day to sightsee around the neighborhood where my grandparents grew up. Brian was his normal self all day and seemed to want to run around more than anything.
It was that night/early morning when things took a turn for the worse.
Brian woke up around two in the morning asking for a bottle. I could tell he was on fire and grabbed the thermometer. His temperature was 103.2. Since he has a horrible aversion to oral medication, I gave him an acetaminophen suppository and he fell back asleep. We awoke early to take my mom to the airport, and this time his temperature was 105.5.
Brian wasn’t crying or fussy or even lethargic by a normal definition. But like my mom said, he was just off. He was very calm and quiet when he spoke and cuddled a little more than normal.
It was 6a.m. and we were headed towards the airport. I knew I was going to end up in the emergency room because I didn’t have many other options. My mom told me to detour, and since she was flying standby, would figure out an alternative flight once the doctors gave us some answers.
I always find it eerie to see an emergency room empty, and that is exactly what we walked into. We were seen immediately and Brian’s temperature was registering high still (I hate when my thermometer gives a reading and it is much lower at the hospital, but thankfully that didn’t happen this time). The doctors did a quick exam and told the nurse to give him Motrin. After wrapping him in a sheet and having the medicine spit back at her, the nurse finally agreed to my suggestion of suppositories. They gave him a stronger dose than what I had on hand at home and said they would let him sleep for a little while.
During this time, Mr. Thom (my most favorite Philadelphian) came to my rescue and sent someone to take my mom to the airport. I know she hated leaving while we sat in the ER, but I didn’t want her to be late arriving home.
After seven hours, the doctor said she wanted to see Brian walk around, which he did with ease. She discharged us with a prescription for acetaminophen suppositories, and assured me that Brian would be fine.
Here is where I should mention that I was battling my own sickness during this. Without sugar coating whatsoever, it is safe to say that I felt like crap. I was grateful to be heading back to the hotel, where Brian and I crawled into bed and watched movies.
That evening, Brian’s temperature began to rise. I knew I was not in any shape to try to walk to a pharmacy, so I turned to the front desk at the hotel. This place is amazing. I asked for a pharmacy that delivered, and without batting an eye, the front desk hostess offered to walk to CVS on her break and buy the medicine for me. You have no idea how relieved I was. And, as it turns out, very lucky.
That night, with medicine in hand, I battled a fever once again. I was able to keep it somewhat at bay, and by morning, it seemed to have broke. Unfortunately, that is when the diarrhea started…black and lots of it. After the diarrhea came vomiting that looked like coffee grounds. After the third time, Brian’s temperature began to rise, and I knew it was time to head back to the emergency room.
Here is where I should apologize to my boy. If I had been feeling 100%, I would have thrown him in the car after the first vomiting episode. Instead, I enjoyed the chance to sleep most of the day with him by my side.
We arrived to another empty ER and were taken back immediately. Right after I placed him on the bed, Brian began to throw up, which turned out to be a blessing. We were able to catch most of it in a bucket and the nurse confirmed through testing that it was blood he was throwing up. Of course, I was not feeling like mother of the year when I thought back to the amount he had thrown up throughout the day already. Confirming that it was blood just meant I knew I should have brought him in sooner. The nurse took his temperature, which was 106, and alerted the doctors.
Immediately people sprung into action. Before I knew it, Brian had medication, blood taken, and an IV placed. Even before we knew the extent of what was happening, the doctors made it clear that we would not be leaving the hospital.
When the blood tests result came back, it showed that Brian’s blood glucose level was 47. In case you are not familiar with the range, this is EXTREMELY low. They ordered a bolus of dextrose (sugar in an IV bag) to bring his level back up. After two boluses of dextrose, Brian’s blood glucose was 147.
An hour later, we were moved to our room and Brian’s nurse checked his blood sugar again. During this short period of time, his level fell to 29. The pediatric attending felt it was best to keep Brian on the dextrose through his IV, and told me someone from the endocrine department would be down to see me the following day.
After a very rough night, I did my best to maintain composure while multiple specialities came in and out of our room. Brian was seen by gastrointerology, allergy, endocrine and pediatrics. They came to the conclusion that he was suffering from a GI intestinal virus and that GI and allergy were no longer needed. Endocrine wanted to figure out why Brian’s blood sugars kept plummeting, so they ordered a 24 hour fast to be completed once his fever had broke for twenty-four hours. (Their concern also came from Brian’s blood sugars falling very low after his endoscopy.)
The realization hit me that we were going to be hospital residents for some time, and my clothes were beginning to take on a life of their own. Once again, thanks to the amazing front desk hostess at our hotel, a bag was put together for me, and Mr. Thom was gracious enough to bring it to me. This helped to keep my sanity and Brian’s, since the iPad was sent along with extra clothes.
Once Brian’s fever broke, they prepared to administer the 24 hour fast. Brian’s nurse, one of my favorites, informed me that they would have glucagon on hand to administer through Brian’s IV in case his blood sugars did not rebound from his bottle once the test was finished. When I asked what the byproducts of glucagon were, it came to light that lactose is included.
Brian is VERY allergic to milk and milk products.
The rounding doctors assured me that they felt his allergies had more to do with milk protein and whey, and that lactose would not be an issue. While I appreciate this information, I still did not want to take the chance and have Brian react to it. As it is, dextrose has a corn byproduct. I was told this would not affect Brian’s corn allergy, but after being on the IV, his left eye was swollen and he had a rash covering his body. Maybe this was just a coincidence and really was caused by the infection, but after everything we had been through, I really didn’t want to take any chances.
Luckily, the doctors listened to my concerns and told me there were plenty other measures they could take to raise his levels without using glucagon.
The events surrounding this test were MISERABLE. I helped the nurses hold Brian down while he was stuck with needles for IVs and held back tears while his fingers turned bloody from multiple sugar tests. Going into the test, the nurses and I thought it would go fast, based on previous experiences, but that was not the case.
Twenty-five hours after we started, Brian was allowed to have a bottle.
Worse than the pain he was feeling every time he was poked, was not being able to comfort him when he screamed for a bottle or a snack strip (pure pears). Even the mother of our “roommate” was heartbroken for my little man.
Thankfully, once the test ended and Brian was allowed to have a bottle, his blood sugar went back to normal without any additional measures. Unfortunately, over the past three mornings, Brian would suffer “spells” where his pupils would grow large, he would stare into the distance, and we were not able to snap him out of it immediately. The third morning, following his 24 hour fast, the resident assigned to Brian witnessed the episode. Since we were in the hospital, and out of fear of missing something else, the doctors felt it would be best to consult neurology.
In case you have lost count, Brian now had five different departments following his care.
Neurology ordered a 48 hour EEG, hoping that he would suffer another spell during that time. Brian did great while they glued the electrodes to his head and never once tried to mess with his “hat” during that time period.
While Brian was hooked up to the EEG, we could do nothing but wait. They no longer had to check his blood levels after endocrine confirmed that he has a low growth hormone causing hypoglycemia. I will be able to follow up on this diagnosis with an endocrinologist at home, and in the meantime, I was instructed to watch him closely if he is sick or fasting. They gave me my own glucometer and sent me to training to learn how to use it. Now I get to be the bad guy when it comes to check his blood. Although, the first time I used it, under the watchful eye of Brian’s nurse, Brian responded, “Good job, mom,” when I finished.
By Thursday, our eighth day at the hospital (ninth if you count the seven hours hanging out in the ER and being discharged), I hit a wall. I was overjoyed when the doctors confirmed Brian would be released that day, because there was no way I could make it one more night without sleep or a real bed. I was existing on coffee and the positive vibes from Brian’s nurses (he had the same great nurse every night we were there except one, and two of his daytime nurses were phenomenal). I don’t know if I would have made it that long without them.
We left the hospital with more information and even more questions. We now know that Brian suffers from a low growth hormone (which his pediatrician was concerned with when he was nine months old, but it was never confirmed), must be monitored closely when fasting before a test or if he becomes sick (most cases he will need to go to the ER to raise his sugar levels), and that there were some inconsistencies with his EEG, but nothing the doctors were concerned with at the time. Additionally, because we lost a week being in the hospital, Brian’s follow-up scope needed to be pushed back to allow more time for him to eat the trial foods.
Knowing that I would be up against the wire, I decided to forgo trying to incorporate carrots into his diet, and have stuck with pears and apples. Slowly but surely, Brian has eaten a little more each day, and I am hopeful it will be enough for his test.
Brian will have his follow-up endoscopy on Tuesday, November 10, and then we will meet with his allergist and nutritionist on Wednesday, November 18 to discuss the results. I am hopeful that we will be able to introduce two new foods to his diet and follow up with an allergist back home.
If all goes according to plan, then Brian and I will be boarding a plane home on Friday, November 20. After more than four months already, I am looking forward to the light at the end of the tunnel. I told the doctors I wanted to be home by Thanksgiving, and I am very grateful to them for helping me to do just that.
I know we still have a long road ahead of us, and I’m sure new mountains will appear along the way. Thankfully, Brian and I are not alone in this journey. From across the country and around the world, thank you. Thank you for following us on this journey and giving me strength.