A Story About Bacterial Meningitis - Part 1

As a parent, you want to protect your children from anything and everything that can harm them.  Unfortunately, there are times where there is nothing that can be done to save your child from excruciating pain and overwhelming tears.  Here is our story that unfortunately takes us upon such a journey.    

At this point of my life, I had just started a new Store Manager job after being on maternity leave for the past few months.  Everything was going smoothly, and then I received a call at my store.  It was my husband, informing me that he was taking our little 3 month old girl to the Emergency Room at Primary Children’s Hospital in Utah. 

This was truly the first time that I had ever been so scared in my life to lose someone so precious to me.  Our little girl Tru, had been sick for the past few days.  She presented flu like symptoms on the previous Saturday and Sunday with a fever.  We went to our Pediatrician, but at the time that we went, we had concluded that she was just sick with the flu.  By the following Monday, she was back to her good old cooing, bubbly self. 

And then as Tuesday rolled around, her fever spiked again, she stopped eating and started throwing up, and she was constantly crying.  We knew something was wrong, but we thought that maybe the flu was just making its final round with her. 

                                                                                                                                        

When Wednesday came about, my husband felt the urge to take her to another Pediatrician while I was at work.  That’s when the pediatrician said it was time to go to the hospital.  I will be forever so grateful that my husband followed that prompting to go in…because it may have just saved our little girl’s life. 

Everything was a blur between receiving that phone call at work, driving to the hospital to meet up with my husband, and getting setup in the Emergency Room.  The nurse and doctor that had been assigned to our case that morning prepared us for the worst case scenario.  They feared that she was presenting symptoms of Bacterial Meningitis, due to her irritability, lack of hunger, upset stomach, and her bulging fontanelle (soft spot on her head).  

We were in the waiting room for around 8 hours before we were transferred to the PICU (Pediatric Intensive Care Unit).  By this point, they had pain-stakenly drawn several vials of blood from her dehydrated body for testing and had done a spinal tap.  She had gotten to the point while waiting in the emergency room, where she would start checking herself out…she just wasn’t all there anymore.  Seeing your child become so ill within such a short time frame, makes you question so many things.  Did we do everything right by her?  Were we the ones who got her sick?  Could we have prevented this?  Why did this happen here and now to such a small, innocent little girl?

By the time we made it to the PICU, we knew for sure that she had Bacterial Meningitis.  The doctors were guessing that she had Type A, which is mainly present in infants and young children.  But following the next few days, we found out she had actually accumulated Type B Bacterial Meningitis…which is usually only present in newborns.  The Infectious Disease Team plus some other doctors that were present with her case were shocked.  One doctor explained that in the past 20 years of working at this specific location, that he had only seen two other cases like ours for her age group.

Luckily for us, we were only in the PICU for one day for observation.  They say that the first night in the hospital is where they would have to watch for any unsettling signs from Tru.  The main symptoms they were looking out for was any signs of seizures, spikes in fever, severe sudden change in behavior, etc.  I have to tell you though, being in the PICU alone is such an eye-opening experience.  Seeing your child hooked up to all sorts of monitors and being engulfed by several different nurses and doctors results in an assortment of flustered feelings.  At this point, I felt like I was experiencing an out-of-body sensation.  Where I was in the room, but at the same time didn’t really feel like I was there.  That this outcome felt more like a dream where you realize you are dreaming, but can’t seem to wake yourself up. 

Before being transferred out of the PICU to a more stable unit, my husband and I walked around.  I just have to say, that we were very lucky that our little girl was only in there for one night.  As we walked around, we saw other children with worse tragedies than ours.  I felt horrible because our little girl was only there for one day, when someone else’s child had been there for much longer.  And I just want to say to all those parents out there who have been in our shoes or even worse, that you are so strong.  I condone you, for you have all experienced such a hardship that I do not dare to ever wish upon any family.   

Once we were settled into our new unit, we began to meet several different physicians from different departments on a daily basis.  My husband and I felt like there wasn’t room to breathe.  Talking to each individual doctor resulted in new questions and new worries.  Most of the doctors though seemed very positive about Tru’s condition.  They said that it looked like we had caught the Meningitis in its early stages, which would hopefully result in lighter chances of having long-term conditions.  Because of the swelling of the meninges (the membranes that line the skull and enclose the brain), some of the extreme long-term effects that can occur are deafness, learning difficulties, seizures, paralysis of the body, etc. 

Every day in the hospital was a new journey.  And with every day, Tru made wonderful strides in improvement.  By the third day we were there, she started playing with her toys again, and would even throw us a smile here and there.  

But, every day was still full of its challenges.  I think the hardest part for me during those days at the hospital, was seeing my little girl have to get a new IV put in about 1-3 times a day.  Hearing her cry, seeing the tears roll down her face, and then being unable to comfort her properly while listening and watching her fall asleep while sobbing just tore me apart. 

On the last day she was in the hospital, they wanted to do an MRI scan to check for any clusters of bacteria that may have built up in her brain.  Because you have to remain completely still for the MRI, they were going to sedate Tru.  And following the MRI, they were going to take her in to get her PICC Line (Peripherally Inserted Central Catheter) setup while she was still sedated.  As we made our way down to get her MRI done, they were preparing to sedate her, and found out that we had to replace her IV line again.  So at this point, she’s sitting in my arms, screaming and crying.  And then once they had her new IV line placed, they gave her the sedation medicine while she was still in my arms.  As she fell asleep while crying, it made me feel like I was putting her down.  This was the moment where I just burst into tears, where I couldn’t stay strong enough anymore.

Following the MRI and the placement of the PICC Line, she got a hearing test done and passed with flying colors.  But, before the test was over, we had found out that earlier while Tru was getting her MRI done, that they required her to go back in a second time for scanning.  We were so worried, considering that if they found something on the MRI the first time, that maybe they wanted to check it out a second time.  Waiting for those final results from the MRI was almost unbearable.  Because, if she did have any signs of bacterial hanging out in her brain, that she would have to have surgery.  Where they would drill a small hole into her head, and sift out the bacteria.  It also meant that the likelihood of having long-term problems would be even higher. 

When we received the MRI results, we could breathe again.  They didn’t find any signs of left-over bacteria.  We were given the a-ok to finally go home the following day!  The stress that we had been surrounded in for the past week may still have resided, but we were elated to finally go home and return to some form of normality.