There were a few days where things seemed to calm down. Less doctors, less tests, less conversations of concern.

I know my last few updates may seem to sound like they have a tone of defeat. It’s not that, but it is a combination of sadness, common disappointment, and just plain exhaustion. Oh, and a little shock still too. And that’s okay. This is hard.

Today, she had her third spinal tap. I asked how it went. I was told good. I asked some more questions and found out more information. I’ve discovered that the more questions you ask, the more information you get. Most of it is worth knowing because with the knowledge comes the power to make decisions; decisions that enable you to advocate for those who can’t advocate for themselves.

The key is having the ability to understand the knowledge enough to make those decisions…and to be able to handle it. That’s not always something you know beforehand, but its nearly always a risk worth taking.

After I left our room for the procedure, Katie and I found somewhere to debrief a bit during the small window of time. Then, I paused in the middle of an important conversation with her to walk quickly back down the hall to our room. Somebody asked me if I was okay. I said “yeah, it’s just that I don’t remember the nurse putting the topical lidocaine on Emma 30 minutes before the procedure like they did on the other two.” She tried to go in and check, but the doctor quickly ushered her out. She assured that must have…yeah definitely did she said. I though about how, before the procedure, I didn’t leave the room and for both of her past spinal taps, the nurses let me know when they were applying the lidocaine. I heard her crying as I got near the room. It wasn’t a great feeling at all. I was mad at myself that I did know for sure. I was mad that I wasn’t allowed to stay behind the curtain like I was for the first one due to “provider preference.” If I’m being honest, I think the preference sometimes…at least this time…had more to do with me and less to do with the provider.

I began to make my way back to my conversation with Katie. No reason to talk about that one, I thought. Back in the room, after the procedure, Katie mentioned something about it not being used. I’m not exactly sure how it came up. I confirmed with the nurse that it was, in fact, not used. I couldn’t really process that. I mean, sure…this isn’t a spinal tap on an adult, but absolutely nothing to numb the pain??? Are you serious? I asked the nurse if that was normal to which she responded…provider preference. I said that’s…barbaric the nurse said as she tried to finish my sentence. I was going to say insane, but yeah, either work. I brought it up at rounds and as it turns out, it really does vary with about a 50% split it seems. That’s insane I said. Maybe I was just having a “my baby’s in the NICU father freak out moment,” but I just didn’t get it. I said wouldn’t it help to at take some of the edge off? They shrugged their shoulder. It just seemed crazy to me not to ease at least a little of the pain especially when everything hurts on a sick kid. Every time Emma was touched she would start wiggling in pain, then writhing, then screaming with her heartrate straight to 220 where it sat until I could calm her down when once the touching stopped. I sort of get it…like if a patient needs a spinal tap then it’s probably urgent and maybe not reasonable to wait 30 minutes for the lidocaine to work…except when it’s not urgent like on the second or third one. But wait. They used it on the first one. Provider preference, right. I still thought it was crazy and apparently so did our first doctor.

I was reminded, yet again, that it’s our job to advocate for Emma. We are her voice. Her chart now states to use lidocaine which, Lord willing, doesn’t matter now.

One doctor said its like an IV which they don’t usually numb. But as it turns out a quick google search reveals that you definitely can request it for that too. I felt awful. I don’t like that I didn’t think of asking especially with her being so sensitive from the infection…or perhaps something much more intense since there are many neurological questions yet to be answered. I didn’t like that no one ever offered it when every single nurse that touched her talked about how much she hated being touched. I mean, she screamed at every touch. Thankfully, she began to get a bit more comfortable around day 5. We’re just tired of seeing her get poked and invaded. We don’t like seeing her in pain.

It turns out it the spinal tap didn’t go very smooth. It took a few sticks and it still resulted in a [blood] contaminated sample of a “much less than ideal quantity”. The nurse said it probably won’t be sufficient for attaining a culture and mentioned the possibility of about another spinal tap in a day or two. Katie and I just look at each other. I wondered why they had trouble getting the sample. Then I wondered what steps they would take to ensure it wouldn’t happen again, if well…it had to happen again. I expressed concern to the nurse who said she could have the provide who did the procedure visit us. I mentally prepared my questions and stored them near the front for easy access. When I asked the provider about why the spinal tap went the way it did, I was told it was difficult to get the right spot. Because Emma wouldn’t moving…because of the pain…because of the lack of lidocaine. I answered my own question and I was okay with that.

This morning around 2 am, I helped the nurse and vascular get an IV in her left hand. I asked for lidocaine and apparently it’s ever a thing for IVs. Emma’s just so sore and irritable right now. Screaming at the top of her lungs, HR pegged at 220, O2 dropping for over a minute. It seems like when they actually stick her for the IV is when her little voice gives out yet still somehow screaming. Absolutely inconsolable until it’s over. Heartrate 230. O2 dropping. She’s red from the neck up, then dark red. I have every secret to soothe our baby Emma fine tuned. None work at these times. It not always that bad I guess and I just pray that it’s not something neurological rather than the infection.

I have the thought and wonder about how much her little brain can handle especially with all the potential injury. At what point might she have a stroke? I need to ask neuro.

Nothing works in those moments. I just get in really close face to face shushing loudly with my left hand holding light, but steady pressure on her head and with my right hand either holding hers or trying to give her a small sponge pop soaked in milk. Just a little so she doesn’t choke while she screaming. She love those, but nothing working at this point. I already know this, but being ready helps to calm her just that much sooner once its over. How much pressure can that litter head take?? Heart rate 230 again, oxygen dropping, come on! I think that while I keep shushing her. It not fun, but at least I’m there too look in her eyes and help calm her down immediately after it’s over. It’s not fun to watch. Her eyes filled with tears this time which was terrible to see and strange because I didn’t think babies got their tears until they were a little older. I asked the nurse, but she didn’t know.

At least they go this one on the first attempt.