Meningitis/Polymicrogyria Part II

Part II, here we go…

I “slept” on a stupid cushion thing in the hospital room. Where is it written that hospital furniture has to go against the Geneva Conventions? Seriously. I was comforted by the amount of equipment surrounding my child. I found the beeps reassuring, I liked seeing numbers even though I could only guess what they meant (I earned my medical education watching ER and Grey’s Anatomy). I liked that through the wonders of technology, all of this information was being fed to the nurses station, though it was only ten feet away. The one thing that wasn’t working well was the pulse/ox thingy on his toe. Zach has never cooperated with those things, and I think the relationship is mutual hate. My little boy looked tired, but I was happy that he was getting all kinds of medicine to kick the buggy’s behind. Overnight his new doctor learned the bacterium responsible was Haemophilus influenzae Type B. This knowledge allowed the doctor to take him down from three antibiotics to one. The hope was that removing him from one of the bad boys, gentamicin, his hearing might be spared. While that wasn’t the case, I don’t regret approving the administration of that antibiotic if it mean saving his life. More on hearing in other posts. See, this is a very layered story.

This day meant meeting a crew of specialists, some I liked, some I thought should stick to research and never deal with humans, especially parents of small children. The first to visit was from infectious diseases. She reassured me that the kids and anyone who had been around Zach was likely safe from contracting meningitis from Zach due to our vaccinations. Zach had only had the first shot in the HIB series, but according to this wonderful woman, that first vaccine likely helped illicit an immune response, even thought it was probably a small one, that bought time to save his life. I know the debate among whether or not to vaccinate is extensive, and I try not to get involved, but I will say that in this moment, though I never doubted the decision to vaccinate, that decision was cemented as a win. She also shared that HIB infections were so rare these days due to vaccines that most doctors who were going to see him likely had never seen a case. Those who had been practicing for over twenty years may have seen one or two. Zach quickly became a tourist destination for med students, residents, hospitalists, and more.

And then there was our first meeting with the neurologist. She was brought in to cover the seizures and any affect meningitis might have on his brain. She ordered an EEG to track brain waves, though this would take place days later when he was stronger. She was useless. More about her later in what I like to call “My Biggest Moment of Self Restraint EVER.” She also ordered an MRI to further investigate the calcifications in his brain. In a moment of panic for me, he was removed from all of his equipment so he could be carried down to the MRI machine. I got to carry him, but he had to be covered in a blanket at all times as a precaution to avoid transfer of infection. He was asleep and it seemed the perfect time to get him to the machine since he would be still. Of course, as we arrive, he wakes up feeling refreshed like his lungs were filled with cool mountain air. There was no holding still for him. The MRI for that day was axed and a sedated MRI was scheduled for the next day.

His nurse on this day was named Lindsey. I have images of Zach finding her twenty years from now proposing marriage. He loved her. For such a sick little baby, he knew how to turn on the charm for the nurses. And he had a special yearning for Lindsey. While all of his nurses were fantastic, I quickly preferred those who couldn’t get enough of him. To me that meant if family couldn’t be with him for some reason, there would be someone who would hold him and love him. Lindsey would come into his room just to look at him. She quickly became my favorite too. The nursing staff at Children’s Hospital is unbelievable. I don’t know what to say. All of his nurses were wonderful. Even the ones who weren’t assigned to him loved him. One night when we had to leave to get home to the big kids, there was going to be a lag before grandparents would get up to Omaha to be with him. We told the nurses at the station we were leaving and he was in his room ready to be held. A nurse who I hadn’t met, I didn’t learn her name, took off like a shot towards his room saying “MINE!!!” They all cared so much for him and I can’t express what that means to me.

The next day was the sedated MRI. We stayed at the Rainbow House the night before because he couldn’t eat or drink. If I had been there, there is no way I could handle hearing him cry. It was best to let him sleep and get some sleep myself, but of course there was the guilt of not being there. Regardless, he slept well, and the MRI was done before we had even woken up. We had planned on getting up and being there early, but they were able to get him in early and he was able to eat sooner. We got cleaned up and headed over. It was still early so we decided to let little man keep sleeping and tried to doze off ourselves. Because I couldn’t breastfeed him well while he was hooked up to machines, I was pumping around the clock. There was a room dedicated to mothers who needed to pump, complete with a hospital grade pump, comfy chair, and TV. I was in this room when his doctor came to give us the results. She waited for me to get back, and as I entered, she gently suggested I sit down. I went to stand by Zach and ooh and ahh over him, and she once again suggested I sit. If a doctor calmly suggests you sit down, she has bad news.

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One Response to Meningitis/Polymicrogyria Part II

  1. I agree with you on the Children’s nurses!! They were incredible during Jack’s time there! They even cared enough to boot us out of the NICU about 4 weeks into our stay so that we could go out for my birthday. I wasn’t sure I wanted to leave Jack, but they made it very clear that he would be well taken care of and that I needed the rest and time with my husband so that I could be a better Mama for Jack when I got back. They really are the best!

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