First, before anybody gets scared… Tobin is out of the hospital and back home and the doctors are confident he will fully recover.
On Sunday June 9th Jenny and I noticed a rash of small pinpoint-like black dots were breaking out on Tobin’s legs. We weren’t sure what they were but he wasn’t bothered and it was so light as to be almost unnoticeable so we decided to see if it would go away on its own.
The spots stayed though the following week and starting the following Saturday, June the 15th, Tobin began having a series of night fevers, which were minor and broken with PediaCare. But on Monday night through Tuesday morning Tobin had a high fever, topping at over 104 degrees, which would not break significantly, even with PediaCare.
In the early morning light of that Tuesday morning, Jenny saw that a very scary rash of dark red spots had broken out on Tobin’s right hand and forearm. I called the pediatrician and got an appointment as soon as they opened.
At the doctors office they drew blood and swabbed his mouth and ran tests. The pediatrician said it looked like a serious infection, either viral or bacterial, and advised that we wait at the office until she could confer with an infectious disease specialist.
Upon her speaking with the specialist, she told us to immediately go to the emergency room at Valley Children’s Hospital and that she would call ahead and tell them we were coming. So Tobin, Jenny and I made the hour long drive to the hospital, where we were informed that the rash on Tobin’s hand was a petechial rash and was very serious and that he would have to be admitted to the hospital for at least 48 hours so that they could determine the cause, ranging from viral infection to spinal meningitis and that if he had meningitis he would be at the hospital for 3 weeks of antibiotic therapy.
In the emergency room, although the staff was top notch, very professional and kind, they did a series of diagnostic procedures that our son, just under one year old, was very upset by. He was briefly cathetered for a urine sample, a IV was attached to his hand, a large amount of blood was drawn for a long series of blood tests and cultures and a spinal tap was performed to rule out spinal meningitis. All of these procedures were horrible to watch and all we could do was comfort Tobin, who could not understand why this was being done to him.
The initial blood count showed low neutrophils, which are the white blood cells that fight infection. We were told his immune system was suppressed, most likely due to the infection itself, and that his condition needed to be monitored closely and he had to start a regiment of IV antibiotics.
At this point, about seven hours after we had been admitted to the emergency room, Tobin was moved to a private room on Tuesday night. We were instructed that he could not leave the room and that he could not have any ill visitors. All doctors and nurses that entered the room had to wear masks, gloves and gowns.
In that room Tobin and Jenny stayed for four nights. Now mind you, the entire time Tobin seemed better than could be expected. He would smile and play but he was very uncomfortable with the IV and the leads that monitored his vitals. When he would move, a lead would often fall off and start a loud alarm that would wake him and Jenny up at night. This was a difficult situation and Jenny was suffering from sleep deprivation. I took the week off at work to help and would go home at night to sleep and bring supplies and food in the morning.
During the four days there were emotional low points for us all. The worse was on Friday when his neutrophils count continued to drop to 80 (when over 1,500 is considered ideal). We were crushed. We were told that if they were the same or dropped any more we would be in the hospital for another week and that they might have to biopsy his bone marrow to look for Leukemia cells. This would mean he would be spending his first birthday (the following Wednesday) in the hospital. This really upset Jenny.
We were told that he was in extreme threat of further infection and that if he had a fever it would have to be aggressively treated with heavy drugs mainly used on chemotherapy patients. This was terrifying, and many friends and family members started prayer circles to call for healing from some higher power and their heart felt wishes gave us hope and their messages touched and lifted Jenny who was so tired and never once left that hospital room. That night we all just hoped beyond hope that the count would go up.
On Saturday morning, I was driving back to the Hospital with 5 days worth of supplies for what we believed might be a long stay when Jenny called me. His blood count was up to 360. We were elated. The doctors where still conferring, but there was a possibility he could go home that day. I was skeptical, and didn’t want to get my hopes up. When I got to the Hospital, Jenny told me another doctor told her they may want to keep Tobin another day to see if the healing trend would continue. We braced ourselves, but soon afterward the treating physician came in and said that upon discussion with the doctors involved, that Tobin could be released immediately and we could follow up with weekly outpatient visits.
Ultimately, there is not a definite diagnosis of what caused this. It was determined most likely to be an unspecified viral infection that caused a temporary suppression of the immune system (Short Term Neutropenia). His neutrophil count is still dangerously low and may take a month or more to recover, but we are so happy to be out of the hospital and are optimistic looking forward.
We are home and I would like to say that everything is back to normal but traumas like this leave their mark. Tobin is in great spirits and so happy to be home but he tantrums during diaper changes because he has a new fear of being held down (something the doctors and nurses often did just before painful procedures). It seems to be getting better as time passes and he learns to trust being handled. Also, Jenny and I have been changed in some way as we have had to come to terms with levels of perceived future grief beyond anything we had ever imagined. But as they say, time heals all wounds and we certainly hope that is the case here.
So that is the story, we went on a big scary adventure and everyone came back and we learned anew just how much we all love and need each other. And we learned what is truly important once more.
To those who knew about this, thank you for your love and support. It was invaluable.