A Personal Story on Bacterial Meningitis

Friday, April 3, 2020

My sister took my nephew Brody to the ER. Over the 2 weeks leading up to the third Brody went from a cold, to strep throat, add in a horrible headache, went to urgent care, then to the ER due to not being able to walk upon waking in the morning. The ER eventually transferred him to St Joseph's Children's hospital by ambulance. There they ran a bunch of tests and did a spinal tap. This spinal tap confirmed he had viral meningitis. It only took a few hours to get these results. Almost immediately after this diagnosis he became unresponsive and was rushed to the ICU. He was unresponsive for about 8 hours. They scheduled an MRI the next morning to hopefully rule out the worst case… Bacterial meningitis.

Leading up to this moment there was confusion and frustration. When Brody was brought to the ER they tested for bacterial meningitis. The results came back negative. According to my sister, this was great news to receive. Later, at St Joseph's, it was confirmed that the first hospital Brody was in made an error in testing his spinal fluid, which resulted in ruling out bacterial meningitis. Brody was already on an antibiotic, prescribed when he was diagnosed with strep throat from urgent care. It turns out in that case a non-standard, more extensive test must be run to find any bacteria. Bottom line, the St Joseph's hospital did an additional spinal tap, ran cultures and the results came back positive for bacterial meningitis.

So, in addition to this he had weak viral meningitis and a bacterial infection in the bone behind his eardrum. All this resulted in significant fluid buildup around his brain from the top front all the way back to the hair line on his neck. This was visible in the MRI and caused his severe headaches. The pressure on the brain also impacted his motor functions preventing him from being able to do much of anything (stand, walk, sit up, eat, swallow, and so on).

Sunday, April 5, 2020

The good news was that he had finally shown some improvement as a result of the anti-viral and anti-bacterial meds he had been given via IV. Also, further treatment did not require him to be in the ICU, so he was moved to the regular wing (which is much less scary). He was on continual brain monitoring with a few hundred (literally) probes to monitor brain activity looking for any nerve or brain damage. The results were very encouraging and showed no permanent damage. Brody was periodically having involuntary contractions that resembled seizures, but they were not. Those have now stopped. Another Hooray!

The bad news was that the treatment was going to need to continue for another 14 days (treatment ends April 15 TODAY) in the hospital to ensure all traces of infection were killed off. The poor kid already had two IV’s inserted. To continue for an extended time, they will insert a line (IV) into his jugular through his neck. This type of line can stay in for the duration rather than having to be redone every 72 hours like a normal IV. The other reason for this, is the drug is so strong that it would damage/destroy the smaller vein in the arm.

They started physical therapy. There was the possibility that he would need to relearn some movements as well as work his muscles given another 14 days in bed. They docs cautioned us that though he had shown improvement he was not out of the woods. Apparently, these types of infections can come back as it is hard to get it all. This was why they needed to keep pumping him full of meds. They also needed to run additional MRI scans to help verify 100% of the bacteria is gone. He had been able to eat smoothies and the like. They will try giving him some food later. If he keeps that down, he won’t need a feeding tube inserted.

Monday, April 6, 2020

Body had lost about 9 pounds in 4 days. He tried some food and kept that down so no feeding tube. Yay! The bone infection is clearing up. This was big news, as if not, they would have operated resulting in loss of hearing in that ear. Sedation went fine and there were no issues inserting the “port” IV. This was quite a process. Knock him out, dye in blood to image the veins, incision in jugular, thread catheter down through I don’t know how and into his arm where the port IV was placed. Anti-bacterial meds go in the arm port and comes out in the jugular (about 12 inches long tube from arm to jugular).

Tuesday, April 7, 2020

Best news, per the doctors, was his progress had been much better that the typical bacterial meningitis patient his age. This was based on brain wave activity (very lucid, knows where he is, his name, mom’s name and so on) and his ability to move (was able with minimal help and a walker to get to the bathroom) and talk. The doctor also said that based on all this, he was 95% of the way “out of the woods”. He was still “out of it” more than he was awake, but that was normal at that point.

Saturday, April 11, 2020

Brody “broke” all the physical therapy challenges they have given him. He told them he does Ninjas (it’s a gymnastics type training we take him to) and asked for something more physically challenging. The therapist told him he was doing the most difficult challenges they had for him. Ha! He still had his port in and will continue treatment. He will also go back in a week or two for follow-up testing to insure there are no traces of bacteria once he is released from the hospital. Release date was still set for April 15th.

Wednesday, April 15, 2020

Body was released first thing the morning. He is now home and relaxing at home and was able to open up his Easter gifts with his mom and sister. I talked with my sister this morning to get clarity on the overall process and treatment of this experience. A few things du Pre mentions as suggestions from experts on how to share bad news are build a caring relation form the start, foreshadow the disclosure, tell the truth, show genuine caring, and inform and empathize (p 208-209). These five suggestions were the ones that stood out to me the most upon hearing about my sister’s experience with St Joseph’s hospital. When Body was first brought to St Joseph’s, they started him on anti-bacterial meds just in case. Three doctors came in on day 2 in the ICU to talk about everything that was going on, to clarify any concerns etc. She loved how sympathetic they were towards her. Nurses also came in every 30 minutes for 3 days and watched the heart and brain monitors during any activity they did with him. Her most memorable thing was whenever they would come to discuss something, they never used the word “if,” it was always “when” he gets better.

This entire process was one big delivery of both good and bad news. As for how St Joseph's Children’s Hospital handled all of this with my sister? According to du Pre, delivering bad news is one of the most difficult challenges that anyone can give to another person (p 208). I believe the doctor and all of the staff handled this challenge with flying colors. Brody told the doctor when he was getting ready to leave the hospital, “Thank you for making me live.”

References

DuPré A. (2017). Communicating About Health: Current Issues and Perspectives. Oxford University Press.