Summer Update

It has been an interesting summer here at the Minion House. We’ve had lots of walks, lots of time “at the pool” in the backyard (kiddie pool), gardening, tomato picking, and more recently, our area has had an explosion of Covid cases for reasons I can’t get into without wanting to throw my computer through the nearest window. This recent burst of activity has thrown a wrench into the local school district’s reopening plans, and is also impacting my nursing program’s plans.

The official plan for Little Miss Minion’s school won’t be coming out until this week and we will have one week to choose which option we want to do. It sounds like there will be an all in person plan, a hybrid plan, and an all virtual plan. The district has not mentioned what the protocols will be for transportation of kids, eating lunch, bathrooms, masks, etc., but these will hopefully be addressed in the official plan. I’m curious to know what the procedures for a sick child will look like as well, since children do tend to be germ factories even when there is not a global pandemic happening. And does Little Miss Minion still have preemie lungs and a depressed immune system? I don’t want to use this disease as the test.

My school is also altering the plans, but I don’t have a clear picture of what that will look like yet. They have mentioned livestreaming lectures with the option to come in person, virtual labs with in person check off days for skills, and generally trying to give everyone the option to go online where possible. It sounds like clinical days will remain the same, but the partner hospitals have to agree and I don’t know if many of the local ones have enough PPE for their employees, let alone a bunch of students who can’t really do much in terms of patient care. They hope to have more information released this week as well.

Soapbox Moment

As a preemie mom, this pandemic is bringing back much of the same feelings that I had when we were in isolation after Little Miss Minion got out of the NICU. The silver lining of this whole situation is that our household is uniquely prepared for hunkering down, away from germs. We are used to not going to the store as a family. We don’t usually congregate in large groups of people. I have a weekly disinfecting schedule for our house. I did these things because I wanted to keep my child healthy and out of the hospital.

When I hear stories about how people are completely disregarding the recommended safety procedures because they think it is a hoax to take down a certain president, I see red. They clearly haven’t had anyone they know get sick from it (I have). They don’t know of anyone who has died from it (I do). The fact that people are refusing to wear a mask is just absolutely astonishing to me. Masks do nothing for the person wearing them, at least the ones that non-healthcare people have. The average mask is meant to contain droplets that could contain the virus. If I do wear a mask, I am keeping my droplets from coming out into the general area around me. If you are not wearing a mask, your droplets can spray all over the place and become a source of infection for other people. People who are not wearing a mask are essentially saying that they don’t care about spreading disease. They don’t care about YOU.

Some tips for reducing your exposure from a Preemie Mom who has been there:

1. If you have to go out, WEAR A MASK! There are very few legitimate reasons for not wearing one. If my five year old can wear one, so can you. If you can’t wear one, STAY HOME.
2. Stay home unless you have to go out. Please note that there is a difference between HAVE TO and WANT TO. You have to buy groceries. You don’t have to browse the sale shelves or make multiple stops because the store is out of your favorite brand of cereal. Deal with it. If you can order something online, do it. Most places have free shipping.
3. If you do have to go out, make it a quick, solo trip. You don’t need your whole family to come with you. You don’t need your spouse to come with you to the grocery store. Make a list. Get in and get out. Get everything at one place, even if this means you have to do without your favorite brand or a sale item from another store.
4. Just because you are “out” doesn’t mean that this experience counts as one exposure. Every store you set foot into is another chance to spread the virus if you are asymptomatic, or to become infected. If you don’t NEED it, do without.
5. Be smart about your surroundings. If many other people around you in the store are not wearing a mask, get out of the store.
6. If you have ANY symptoms of illness, STAY HOME. I’m always infuriated by how many people have told me “its just allergies” and then they turn out to have a cold or the flu, especially when we were isolating with Little Miss Minion.
7. When you get home, take your shoes off. Launder your mask. Wash your hands with soap. Don’t rely on hand sanitizer unless you don’t have access to soap and water. Soap is better.

The thing that makes me the most angry about this whole thing is the secondary toll that the surges are taking. Irresponsible behavior and the refusal to wear masks leads to a rise in cases, which leads to a rise in hospital beds being occupied. If all the ICU beds in an city are full of Covid patients, there is no room for the pedestrian who got hit by a car on their walk to the bus stop. There is no room for the person who is having a heart attack. There is no room for the cancer patient who is having a reaction to an unrelated virus because their immune system is already shot.

For Little Miss Minion’s last shunt surgery, we waited in the ER for several hours before a bed in the PICU opened up. And it turned out that it wasn’t even a true PICU bed, it was an overflow area that is usually reserved for pediatric cardiac patients. And that wasn’t during a pandemic. If pediatric cases increase, which they probably will if schools reopen without proper protocol, there might not be beds available for unrelated things like shunt surgeries.

Stay safe and healthy!

Don’t forget your mask!

Brain Surgery #5

First of all, Little Miss Minion is doing well and we are home. Don’t let the title of this post scare you. 
Monday night, we noticed that LMM was acting like she had a headache. She still doesn’t really talk much, but she was rubbing her head and crying off and on. She had speech therapy that night and seemed ok except for the head rubbing and generally seeming a little “off.” Tuesday was more of the same, but the problem with hydrocephalus is that the symptoms of a shunt malfunction are very subtle until they aren’t anymore. Irritability, being cranky, headaches…but when it happened for the third day, we listened to our guts and took her to the ER. They did a “shunt series” X-ray, which takes pictures of the shunt in its entirety to make sure that all the pieces are where they should be. Sometimes the distal catheter (the end where the extra fluid drains from) gets moved or blocked. Sometimes the system gets disconnected. Everything looked ok on the shunt series but they couldn’t explain the crankiness and headaches so the neurosurgeon wanted a CT scan to see the ventricles. Sure enough, one of her shunts had stopped working so the cerebrospinal fluid wasn’t draining like it should have been. 
They admitted us to the PICU (pediatric intensive care unit) to monitor LMM and decide on the timing of the surgery. As soon as we knew the shunt wasn’t working, surgery was a certainty. There is no other way to “fix” hydro. So we were taken to the PICU to spend the night. 
LMM is now two, and she knows a little bit more about what is going on. She handled it really well, and fell asleep on me while we were walking down to the surgery suites. They gave her a little bit of a sedative to keep her calm while they took her back to get prepped and while it was kicking in, she started cracking up laughing. It was a nice stress reliever. 🙂
The neurosurgeon came out after surgery to talk to us and said the surgery had gone well. We got to come back and see her in recovery while the anesthesia wore off soon after. After a few minutes back in recovery, we were cleared to go back up to the picu. As they were wheeling her out, the nurses at the central station all waved to her and she waved back from her bed. 
Within an hour, she was chugging water. An hour after that, she was onto jello, and soon after that, she was cleared for real food. Everyone was impressed at how fast and how well she was coming off the anesthesia. Last time, she was groggy and slept for most of the day. That was also about 23 months ago, so she was much smaller. 

We were discharged the following afternoon and LMM has been back to her regular happy self. 🙂
Many thanks to the incredible nurses we had this time. This hospital is not our first choice, but it is the one that her neurosurgeon primarily works out of. Our nurses were hands down the best we’ve ever had at this hospital. 

Neurosurgeon Follow Up

Every couple of months, Little Miss Minion has a sedated MRI to make sure that her shunts are working well and that any excess cerebrospinal fluid is being drained. She had one today and things are looking good.

She seems to have slight issues with sedation, most likely due to her preemie lungs. Her oxygen levels dropped slightly during the procedure, but they were able to quickly correct the problem. Preemies, especially micro preemies, have underdeveloped lungs at birth and it takes them several years to catch up.

The actual scan was mostly good news. Everything looks good, except an area near her ETV site. It is slowly getting bigger, which could mean several things. It could be that her etv is getting blocked or is scarring over. It could stabilize itself. Or it could get worse. Right now, her neurosurgeon is confident that she’s not having any hydro issues and that the area is safe to observe. We’ve been cleared for 6 more months!

Another saga of preemie problems happened Saturday night. LMM had a low grade fever and threw up twice. Because of her shunt and her prematurity, the nurse line recommended that we bring her in to the er for evaluation. Could it be a shunt infection? A malfunction? Stomach virus? The doctor on call was ok with having us just watch her closely,  since we were going to have an mri today, but we have to be on constant alert for shunt issues.

Constant Vigilance!

 

For those of you who might not be familiar with the above clip, this is Professor Alastor Moody from the Harry Potter books. Well, technically, its Barty Crouch Jr, but that’s another story entirely. Moody is an Auror, a Dark Wizard catcher in the Wizarding World. His job is to find and capture wizards loyal to the evil Lord Voldemort. His secret for accomplishing this (and staying alive in the meantime) is CONSTANT VIGILANCE! Life with a hydro preemie requires CONSTANT VIGILANCE as well.

Little Miss Minion has several things keeping her hydrocephalus at bay right now. She has two shunts that mechanically drain excess cerebrospinal fluid (brain Gatorade) to prevent her pressure from building. She has a manually created passage between her ventricles to let the fluid flow and drain between them, and she has an ETV (endoscopic third ventriculostomy) that functions as a drain. Ideally, the ETV would allow all the excess fluid to drain out and the shunts would act as backup methods…but what is ideal and what is reality are two different things. At any given time, her ETV could close or become blocked. Her shunts could malfunction, break, or become blocked. CONSTANT VIGILANCE!

Saturday night, we noticed a little bump near her ETV site. It had been there since she had the surgery, but it was puffed up a little now. She was acting normally, eating normally, showing none of the usual signs of increased cranial pressure. However, the possibility is always there. CONSTANT VIGILANCE! We put in a call to the pediatrician after hours line, just in case. They contacted the hydrocephalus clinic on-call ER doctor, who ended up telling us that this is part of the healing process and if she’s acting normally, there is nothing to worry about right now. CONSTANT VIGILANCE!

Between the initial call to the pediatrician after hours line and the neurosurgeon calling us back, we were already planning for another hospital admission, just in case. Would we take her in that night and risk another 12 hours of cold/flu/RSV exposure? Who would need to take off how many hours from work, debating between ourselves if this was a shunt issue or her ETV, whether her fontanel felt puffy, her last ten feedings and how they had gone, whether she had been fussier than usual over the past few days, did we still have multiple copies of her isolation letter or did we need more, how many bottles of breastmilk were already made up and would any get thrown away due to age…CONSTANT VIGILANCE!

I was watching Frasier this afternoon and it was the episode where Niles has to have heart surgery and Daphne flips out in the waiting room.

Roz: Daphne, it’s okay. Just calm down. You know when this is all over we’re…
Daphne: There IS no “when this is over”! There’s no tomorrow, no next week, no next year! There’s nothing until he comes out of there and I know he’s okay!

Sometimes Most of the time, this is how we feel. There is nothing else in the world until we know that she is OK. But we don’t ever really KNOW. We will always be worried about the status of her shunts.We will always wonder if they are working correctly, if her fussiness is due to being tired, teething, or a shunt malfunction. If that headache when she’s older is because of staying up late to study, drinking too much pop, or her shunt malfunctioning.

The thing we don’t have to worry about is taking anything for granted. Her firsts are always miracles. Her first smile in the NICU is engraved on the back of my eyelids. Her face, the first time I saw her without a feeding tube and nasal cannula. Her hair, now that its growing in and not being shaved for surgeries every other week. Her eyelashes. Her hand, and how huge it is compared to one of the first times I held her and she wrapped her entire arm around my THUMB. Every ounce of weight gain is celebrated. Every smile is remembered. Every laugh, every cry, these things prove that her lungs are in good shape and that she’s breathing.

Right now, she looks like any other 4 month old. But she is so much more.