A few days after Josiah had been discharged from the hospital, we decided it was time to give thanks. We packed up some warm, homemade chocolate chip cookies and headed over to the fire department that had saved my sweet son. His doctors had told me, more than once, that if it weren’t for the intra-osseous procedure he wouldn’t be with us today. I have no doubt that God had His hand in that, just like He always does.
Josiah was excited to be visiting the fire department and couldn’t wait to see the fire trucks and ambulances. This made me happy because I was afraid that he would become fearful of the sirens and trucks, but then again, he wasn’t even conscious, I was the one having the issues.
We knocked on the heavy doors and a barefoot fireman led us in. He gave us a tour around and introduced us to some more of our heroes. After some lighthearted talk, the medics began to share what that morning was like for them. Hearing what I did left my head reeling; almost finding it hard to believe what he was saying was true.
“Your home base station had been dispatched out on another emergency call just one to two minutes before you placed your call, that’s why we showed up. Not entirely uncommon, but it doesn’t happen every day…” I wondered where he was leading with this.
“When we realized that his blood sugar was almost non-existent, we knew we had no other choice than to use the intra-osseous procedure.” Yes, that scary, painful procedure had left my son with a fractured tibia. I’m finding out that it was a small price to pay in comparison to his life.
“Well, I am glad that you did!” I glanced over at my little son wearing his bright red fire hat, thankful.
“Do you believe that our department had the training just the week before? As of now, our station is the only station trained in southern California to perform it. Your son was the first patient to ever have it done outside the emergency room.” He said this to me in a matter of fact way as my chin fell to my chest.
“WOW! I’m feeling very fortunate and also confused. Why are not all of the departments trained? Obviously this procedure saves lives.”
“It’s all about the funding and the difference between a county owned fire department and an independent department.” There’s something new that I learned. I had no idea that there were differences in the help we could receive, based on where we lived. This was scary stuff. I couldn’t help but wonder, “What if this happens again? What if Midway city isn’t busy next time? What if they can’t save him?” It looked like I would be calling the city and county to see about getting the proper training, my son can’t be the only person living in this area with this problem.
The firemen let the kids climb all over the truck, doused them with stickers and coloring books and let us take several hundred pictures (not an exaggeration). We thanked them, again, they high-fived Josiah and we headed back home. As we drove, all that I could was shake my head in amazement at God’s work. I know everything comes together for good, no matter how bad it seems while you are going through it. I didn’t understand why my kids had to go through the health challenges in the first place. It made me sick to my stomach seeing them in the ways that I had. That sickness in my stomach was nothing compared to the astonishment and love that I had in my heart for God. Maybe that was His whole point; the only way I’d fully ever be aware of His Amazing grace is to see it first-hand. It takes a lot to get a stubborn, hard-headed person like me to finally give up and give in and surrender everything to him. That’s exactly what I was learning to do.
The realization of God’s intervention gave me the courage to face the upcoming weeks. I was feeling more confident that God was with me all of the time, even went I felt alone. I was even more assured that He was always with my children, which gave me enough peace to attempt to sleep a night. The next few weeks would be consumed with labs, nephrologists, endocrinologists, gastroenterologists and a geneticist. We had been anticipating their next ‘big procedure’ which was a CGM placement. The endocrinologist would implant a microchip sensor into their gluteus (butt) muscle where it would monitor the interstitial blood sugar every four minutes. The blood sugar levels are recorded and then the data is uploaded and studied.
Their endocrinologist called a few days after the sensors were implanted. Amaya’s results showed a few peaks of blood sugar hitting just above 200 but her body seemed to be able to bring it back down to normal levels naturally. A normal blood sugar range should be somewhere between 80-140, anything above that could indicate diabetes (which they had been tested for several times).The cause for these peaks was unknown and we would watch it with blood sugar monitoring. Josiah, on the other hand, was showing giant peaks and valleys. Especially during the night, you’d see his levels go from 120 and shoot up to 240 and then drop to 60 all within an hour. Blood sugar that drops below 70 can cause all sorts of problems, including seizures, disorientation, coma, brain damage that is equivalent to drowning and death. His body would do this several times throughout a 24 hour period and it was definitely concerning. She felt strongly that Josiah needed to be readmitted into the hospital for more testing and monitoring.
I was so not looking forward to another hospitalization. I hated seeing my kids poked and prodded but what I hated even more was the unknown cause of this. So, I packed our suitcases once and again and headed back to the fourth floor of the children’s hospital. We were warmly greeted by the staff, they were becoming like a second family. Josiah was even at ease when he recognized the doctors and nurses. The nurses let him choose which arm he’d like to start the IV in and he willingly gave it up without a fight shedding a tear.
Hours after our admission, the doctors came in and gave us the results of both kids MRI from the previous week. It was astonishing. Both of their pituitary glands were identical to each other; their anterior lobe measured smaller on the right than on the left and was unusually small for children their age. This was an indicator for central hypopituitarism and made total sense because neither one of them had grown in almost a year. Now, we had to contemplate whether to start growth hormone injections. Would a couple of extra inches be worth all of the nasty side effects?
On our third day of the stay, we found out that Josiah had another bowel obstruction. My poor little guy just couldn’t win. Jim and I were exhausted and bickering over any little thing. I was really counting on being discharged, looking forward to sleeping an actual bed and eating real food. Now it looked like another two to three days, at least.
Placement of the NG tube this time was a nightmare. Josiah fought with all of his might He was drenched in sweat, his voice hoarse and the skin on his arms was raw from fighting the restraints. I couldn’t stand seeing
my baby tied up, screaming for help, looking at me with that look in his eyes that said, “Why are you letting them do this to me?” I couldn’t take it anymore and had to get some air. Once the tube was in place I left the hospital and took a walk across the street to sit in an empty parking lot.
No wonder people were staring at me as I crossed the intersection. I looked like a train wreck; people probably thought I was a loony that had just escaped the mental ward. I was still wearing my pink sleeping boxers with peace signs all over them, a blue, puke stained wife beater and my sticky, summer sandals. I had a long warm sweater on, because it’s always freezing in the hospital, I wore my fancy ‘mom’ hospital ID bracelet and realized I hadn’t washed my hair in two days. It was still in the messy ponytail on the top of my head. I sat on the curb and called my best friend, Jeanae.
The minute I heard her voice, I lost it. I let the tears fall, the sobbing made everything I said to her inaudible. She listened as I vented all of my frustrations, fears and anger. I was tired, hungry, sleep deprived, had a perpetual headache that just wouldn’t stop and mostly, terrified. I can remember her repeating, “It’s all going to be okay. You have every right to feel and say everything you are feeling. I will jump on a plane right now if you want me to. Just tell me and I’ll be there. I’m here for you…” Being separated by several states has never stopped her from supporting my family, ever. This time wasn’t any different.
She managed to calm me down, always knowing the perfect thing to say. I felt better after such a long cry and felt like I had the courage to face the next few days. I returned to the hospital and was ready to help my sweet son start his second bowel clean out.
Three days later, it was finally cleared. This one took twice as long as the previous and was twice as painful. We found out the Josiah’s excessive crying and pain was a result of the NG tube being placed to deep inside, causing it to coil up and kink the line. It took four gallons, YES, four gallons of Golyghtly (this is equivalent to liquid ex-lax) to clear his bowels.
Talk about a miserable time. Finally, we could go home with strict instructions to follow-up with his pediatrician the very next day and again with his GI doctor. I thought I could handle that, little did I know what would take place in the next few days…