Three years ago this weekend, I woke up to a sterile room of beeping, bright lights, respirators going on and off, the slow hum of a machine that was keeping my son alive. There were several doctors in the room, nurses covered in gowns and masks, heating lamps above my child, a blow up bed beneath him pumping heat in to the bed, and lines and IVs covering my child’s head. I looked over and I saw the tube coming out of his mouth. Slowly I leaned in and I watched him gently chew and suck the tube. He was only 3 months old, and his eyes were glassy, his face was bloated from fluids and the vent. He was responsive, but he was very, very sick.
I was in a daze. There were moments I sat there wondering how could this have possibly happened, and the fact that we had no idea what was causing this was terrifying to me. We were more than 24 hrs post respiratory and cardiac failure and we had no idea why he was so sick. Over the past 24 hours he couldn’t get his blood sugar over 30 consistently, his body temperature was dangerously low and he was hypothermic, the cardiac monitor said his heart was beating at around 60 beats per minute, and as we woke up we were told his liver was failing.
I’ll never forget the doctors and the words that came out of their mouth and the one thing I heard over and over was “probable Sepsis”. Sepsis is a blood infection. In many ways Von’s illness was presenting like a systemic blood infection, but there were pieces that did not fit. Von’s EEG was normal and there was so sign of seizures, and we were able to rule out a serious neurological contributing factor. However, nothing made sense, and the doctors were so quiet. The nurses were so somber. Many of them couldn’t look us in the eyes, there faces were concerned, their words were and tone was serious, and their hearts appeared to be breaking. None of it made sense to me. How did my precious boy end up here?
Prior to that Friday, Von had been a very normal, albeit picky and quiet baby. He rarely cried, seemed to sleep a lot, and had jaundice that just would not shake. Doctors discussed things being missed a lot. They felt like they were missing something, that Von wasn’t presenting normally to them, but the pieces of the puzzle were scattered on the table and they couldn’t get the edges formed. That evening on the 2nd day, was the hardest for me. Von was given several blood transfusions, he had surgery to put in a PIC line which would send dopamine straight up his artery to his heart. Von was on full life support, and nothing they were doing was making him better. I remember feeling helpless, and I remember screaming at the top of my lungs for someone to tell me something. I didn’t understand the words, the medical lingo they were using was hard to decipher and their poker faces made it difficult for me to gage if Von was going to ever come home. All I wanted was for someone to tell me SOMETHING. I was the mom in the hallway of the PICU screaming for answers, hot tears were streaming down my face, and finally a doctor said he would sit us down.
We moved to the Family area, and he handed us a sheet about the risks of blood transfusions. He discussed the risks and infections he could receive from the donated blood, and then he looked at me and said, “When Dr. Orioles left today I asked him who the sickest patient on the floor was, and he told me it was your son. We are more than 24 hours in to this and we still do not know what is making your child sick. Our hospital has a 3% mortality rate and most of those that die are children that are not diagnosed. Your child is very ill. I would estimate he has a 50% chance of survival at this rate, and if he survives he will never be the same.” I don’t remember anything else he said because I fell to the ground in tears and rolled in to a fetal position. I sobbed and screamed, and I pleaded for them to save my son. The thought of leaving the hospital without him was devastating. There was no breath left my lungs, I begged God to take me and to save Von. There was no consoling me at this point, and my husband just sat there quietly caressing my hair and telling me to be strong.
It was more than an hour before I could collect myself, and the doctor told us that we needed to get through the next 12 hours. He said if Von’s blood sugar did not rebound in the next 12 hours there was no hope. Todd and I decided we would not sleep that night. It was 8 pm, and we would stay up all night and be with the nurses as they drew his blood every hour. The doctors came in and said there were going to start a powerful steroid called Solu-Cortef and an strong antibiotic. They felt this was the last hope. They told us this was basically the last option left to see if he would improve, and I help tight to Von’s fingers that night. My tears dripped on to his cheeks when I kissed him. It had been more than 24 hours since I held him, and inside my heart I was dying with him.
As the steroids and anti-biotics were pumped in to him by midnight, Von’s first blood sugar over 100 was registered. We hadn’t seen 100 at all in the time we had been there. I remember his nurse jumping up and down, and she looked at him and said “Come on Von, I know you can do this.” Each hour the blood sugar was continually improving and after about 8 hours he was consistently above 90. His internal temperature was also rising. We weren’t certain what was making this happen, and that morning after no sleep, Von’s doctor came in and handed us a pamphlet. He said, “We don’t know yet, but we think Von is adrenal insufficient. We are also concerned his thyroid is not functioning.” Then they handed me a pamphlet and said, “We are concerned your child has Panhypopituitarism.” I remember thinking “Pan-Hypo-What”. They were concerned Von either was born without a pituitary gland or that the one he had may have failed. In order to verify, they needed to do a MRI.
As the labs came in over that Sunday, it was clear Von was definitely Adrenal insufficient as very low levels of cortisol were detectable in his blood when he was admitted. His thyroid levels were also near non-existent, and this would explain the jaundice he had that would not clear. They were confused because Von wasn’t presenting like a patient that would typically have this disease. He had great muscle tone, and all of Von’s male anatomy was perfectly formed. The number 1 way they can detect Panhypopituitarism is from how low testosterone levels effect the body, and Von was showing NO signs of low testosterone.
Over the next few days, Von improved as they put more and more steroids in to his system and within 6 days he was removed from the vent. That evening he was taken back for his MRI. I’ll never forget pacing the room waiting for answers, I didn’t even KNOW what this diagnosis meant but I knew it had treatment. I knew it could be treated and that Von could live if we took very good care of him. At about 10 pm we got the news, Von’s anterior pituitary gland and pituitary stalk were completely absent. Jumping up and down I ran to my husband and I screamed “He has Panhypopituitarism”. I was so excited for an answer, and yet knew nothing about what it meant. The only thing I knew is that we could help him, we could treat him, and with a lot of therapy and doctor intervention Von could grow.
Von progressed after the diagnosis was given and all his hormones started being replaced. He was never the same though. After they took him off life support, they said to us “Von had a very traumatic illness. It is likely his brain is permanently changed and altered because of this, and Von will probably have learning disabilities and will develop later than his peers.” I did not care because he was alive. He was here and no one was going to take him away from me again.
Days like today, nearly 3 years later, still make me sad. I’m sitting here numb and sad about that moment when he stopped breathing. I’m hopeful that after 3 years of hard work, intense therapy and a lot of intervention from doctors and nurses that Von is progressing. The doctors were right. Von has never hit a milestone on time, and he has significant impairments in his learning, cognitive skills and motor processing. However, today is a reminder to me of the fighter I have, the grace of God for saving my son, and the fact that we can accomplish anything as long as we have faith in ourselves and faith in God.