Another Semester Down

The fall semester of 2019 is in the books and I came out with another A! Anatomy and Physiology I was tough, but interesting. The best part is that I think I can reuse my book for the spring (A&P II). I know I can use the other half of my coloring book and flash cards.

The end of this semester also brings me to the halfway point of my return to school. I’ve been taking classes for 2 1/2 years now and I’ve got 2 1/2 left, assuming I get into nursing school this fall. I have the grades and the classes done-I am scheduled to take the HESI in January and then I can apply to nursing school in March.

In other news, Little Miss Minion had her first false alarm shunt incident at the beginning of the month. She’d been complaining of a headache off and on for several weeks, so we talked to her neurosurgeon. He wanted us to come in, since it had been going on for so long. One MRI later, he told us that her scans looked ok and whatever it was wasn’t shunt related. The bright side of this little adventure is that LMM hasn’t complained of a headache since then. The bad news is that this added a new, rather large bill to our “tab” at the hospital. We’re still paying off her surgery from October 2017! If our NICU and hydro journey has taught me nothing else, it’s that medical bills can be paid monthly and financial aid is a lifesaver.

In happier news, it’s almost New Years Eve! That means we get to open The Jar from 2019. At the start of this year, I took an empty mason jar and put it on the kitchen counter, along with a pen and some small slips of paper. The idea was to write down memorable, funny, cool, or happy moments throughout the year and then read them all together on New Year’s Eve. I’ll have to share some once we open the jar.

I hope everyone had a great holiday and I wish you all the best in 2020!

2 Year Shuntiversary

Tomorrow marks two years since Little Miss Minion’s last surgery. This is the longest that we have gone between surgeries (*knock on wood*), and she has changed so much since the last one. Before her last surgery, she still wasn’t really talking and was having some minor gross motor issues. The shunt malfunction that caused her last surgery was a slow breakdown, and I suspect that it was putting pressure on the part of her brain that controls speech. She is a chatterbox now, and enjoys singing to herself and talking to her toys and anyone who will listen.

Another interesting facet of this milestone is that she is old enough now that she will remember any future surgeries that she needs to have. She will notice the shaved patch of hair, and will remember the feeling of having stitches. I hope that she will remember the specific feelings of shunt failure, so that we can compare any headaches to the Shunt Headache. I have been told that Shunt Headaches are subtly different from regular headaches, but how can I explain this to a little kid? How do you explain to the kid that you have to go to the hospital for a lot of tests because they have a headache? What about when you (the non-shunted person) say that you have a headache? If the hydro kid understands the severity of THEIR headaches, how do you explain that YOURS are just inconvenient and don’t require a hospital visit?

While this Shuntiversary reminds me of the last five surgeries, its also a great statistical milestone. Half of all pediatric shunts fail within two years. After that, the failure rate is much lower. This is a great thing for Little Miss Minion and I hope we make it a long time without another brain surgery.

Hydrocephalus Awareness Month

September is Hydrocephalus Awareness Month.

For those who don’t know, my daughter Little Miss Minion was born at 28 weeks. While in the NICU, she developed an infection that led to meningitis and sepsis. As a result of the meningitis, she developed a condition called hydrocephalus.

Several weeks after she was out of the woods from her infection and complications, I remember getting a message from the charge nurse one day when I was at work that said they had done a scan (they did brain scans periodically to make sure she didn’t have a brain bleed, another complication of premature birth) and the scan had revealed enlarged ventricles. Of course, I immediately googled enlarged ventricles and found articles about kids dying in Africa with heads the size of watermelons. Needless to say, I hightailed it to the NICU to find out what was going on with my baby. They told us that a specialist was coming to talk to us about our options. I was convinced that there was a strong chance that LMM would end up like those kids in Africa.

The specialist they sent turned out to be an incredibly talented neurosurgeon from a nearby Children’s Hospital. There aren’t many pediatric neurosurgeons in the country, and there were none in the medical system we used. That’s a story for a different day.

The neurosurgeon explained that LMM had something called hydrocephalus. He told us that, because of the illnesses she had overcome, her brain had become damaged and was no longer draining itself the way it should. He told us about cerebrospinal fluid and how your brain creates this liquid inside areas called ventricles. How something happened inside LMM’s brain and the liquid wasn’t draining. Instead of flowing around her brain and being reabsorbed, it was pooling and building up, putting pressure on her brain.

As if this wasn’t bad enough, he went on to explain that the only way to fix this problem was to surgically implant a device called a shunt. There would be a small tube placed inside one of her ventricles that would drain the extra fluid into a pocket near her stomach, where it would be reabsorbed.

Her first shunt surgery took place when she was about eight weeks old and weighed around 4 pounds. Since then, she’s had four more surgeries.

The only experience I had with hydrocephalus was watching a Disney Channel movie starring Frankie Muniz called Miracle in Lane Two. It’s about a kid who wants to race these Build It Yourself race cars. The kid has spina bifida, and uses a wheelchair to get around. He also has hydrocephalus, and has a shunt malfunction during the plot of the movie. Having this as my baseline knowledge, combined with the terms “brain damage” and “brain surgery” plus the fact that no one could tell us what this diagnosis meant for LMM, we were incredibly worried for her.

Luckily, the brain damage was minimal (as seen on multiple MRIs) and it appears that her brain simply went around those areas to make new connections. We won’t know for sure, so we just have to wait and see if she starts having trouble later.

If you’ve stumbled on this blog by searching hydrocephalus, I want to tell you that you aren’t alone. Also, don’t google it. 🙂

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. 

Hydrocephalus Awareness Month!

Happy September! 

September is Hydrocephalus Awareness month. In case you are a new reader, my daughter Little Miss Minion was born 12 weeks early and developed hydro as the result of a series of complications from an infection, sepsis, and meningitis. She had her first surgery at around 2 months old, followed quickly by three more within two months. We are coming up on two years since her last surgery. 
Hydrocephalus is a tricky disease. For the caregiver, it creates a constant see saw of “is it or isn’t it” because it can mimic almost any illness or general toddler behavior. Headaches, nausea, vomiting, crankiness, sleepiness… could be typical toddler behavior or it could be hydro rearing its head. 

The only cure for hydro is brain surgery. That’s not ok. 

Shunt Revision #4

Little Miss Minion is currently sleeping off the sedative from shunt surgery #4.

Her last surgery was mostly successful. The goal is to drain extra fluid from inside the ventricles in her brain. Two weeks ago, the neurosurgeon opened spaces in between the two main ventricles so the fluid could flow freely between them. He also opened a drain in the third ventricle, allowing extra fluid to drain that way. Today’s procedure was necessitated by the fact that back half of one of the ventricles had sealed itself, possibly because of the meningitis scarring or because of the recent surgery.

The neurosurgeon added a second shunt today, to drain that back section. There was no way to try to open spaces for it to drain to the other side because the last surgery worked so well.

After her surgery, we were moved to a room with roommates. LMM is a Preemie and needs to be isolated from the public, so this was a problem. Long story short, the roommates got discharged and we’ve been promised that they will try to avoid giving us roommates.

Preemies and isolation go hand in hand. Ever since she was born, we’ve been drilled about hand washing, limiting visitors, reducing contact with others, no daycare, no public places. This hospital seems to have no concept of what being premature really entails. It’s cold/flu/RSV season. We haven’t left our house with her except for doctor appointments.

It’s incredibly frustrating to try to explain isolation to someone who supposedly went to medical school.

Shunt Revision #3

Little Miss Minion had her third shunt surgery this morning. This shunt story started two days ago. Mr Minion and I feel her fontanel (soft spot on her head) on a pretty regular basis and we both thought it felt different Monday night. Tuesday morning, it felt slightly more different, so we took her in to the ER to get it looked at. She was acting fine and not really showing signs of pressure, so we caught it very early.

The plan was to have an MRI done yesterday to take a look at the ventricle walls and the third ventricle to decide which of two surgical options would be the best.

In a normal brain, there are 2 ventricles in the center of the brain. These are like water balloons and they are normally slightly full of cerebrospinal fluid (Gatorade for your brain). When she had meningitis  (which is pretty much confirmed at this point by different things that have happened), the infection caused some scarring in her brain tissue, including the wall that separates the two ventricles. Normally, CSF can flow between them, which would allow her shunt to drain both. The scarring blocks one ventricle from draining, so pressure was starting to build up. There was also a blockage, probably caused by the meningitis, in the third ventricle, which is like the S bend in a toilet (for lack of a better description). The two main ventricles would be in the bowl, and then they drain through the third ventricle.

There were two options to solve these problems. The first option would be to place a second shunt. This would mechanically solve the drainage issue, but would create a second area of concern for infection or shunt malfunction.

The second option (and the one we went with, at the recommendation of her neurosurgeon) is called ETV (endoscopic third ventriculostomy) and fenestration (creating an opening). This procedure creates a hole between the two main ventricles, allowing fluid to flow between them (fenestration) and creates a “drain” in the third ventricle to allow fluid to flow out that way. So the fluid can now flow down through the third ventricle and exit around where it should, and the shunt can still drain anything that doesn’t go out that way. There is a valve on the shunt that reacts to pressure, so it shouldn’t drain unless it needs to.

The ETV could negate the need for the shunt, but they don’t like to remove the shunts unless there is a good reason to do so. Plus, there is a slightly higher failure rate with the ETV than the regular shunt at first.

So that’s what’s been going on with us.

85 Days

Today is the 85th day since Little Miss Minion was discharged from the NICU. She’s officially been out of the NICU longer than she was in there.

Last night, Mr Minion and I thought that her fontanel felt a little puffy. This morning when we woke up,  it was still puffy, so we took her in to the hospital to get it checked out. Turns out there is something wrong with her shunt again, so we’re getting an MRI tomorrow and then she’ll probably have surgery to correct it within the next couple days.

We caught it pretty early, so she’s still feeling good. We had a smiling contest earlier. She won.

Shunt Revision

Shunts have a 30% failure rate during the first year. It looks like we are getting ours out of the way early.

I took Little Miss Minion to the pediatrician yesterday because she was hysterical for most of the day. I figured that she had an ear infection and those are a big deal with shunts. She had also been doing this thing with her eyes called “sunset eyes.” This is a term used for when a person’s eyes look downward and appear wider than usual. Picture surprised eyes, looking down at your feet with your head facing straight ahead. Pupils are in line with the bottom eyelid. This is a sign of pressure within the skull.

The pediatrician sent us to the emergency room of a children’s hospital  (not our previous one) to get checked out. Apparently our usual hospital doesn’t have a pediatric neurosurgeon on call.

I’ll try to keep the language here PG, but the rest of the night was an absolute shit show. LMM was fine the whole time-this was an issue between us and the medical staff at the hospital. As you are all aware by now, she was born at 28 weeks gestation. This means that she missed out on the entire 3rd trimester antibody transfer, which means that she has a compromised immune system. We were told during our NICU stay that she is highly susceptible to infection and that she needs to not be in public places, especially once cold/flu/RSV season begins. Any kind of respiratory infection will send her to the hospital and will probably require intubation (breathing tube/respirator).

We got to the ER and the first thing I see is a little kid coughing. Luckily, the triage nurse put us in an unused office to wait, since she is a Preemie. From there, we were admitted to the ER and got several scans done. They did an x ray shunt series, which takes x rays of her head, neck, chest, and stomach to make sure the shunt is positioned correctly. They did an MRI to see the exact location and position of the intake end of the shunt, and they did an ultrasound through her fontanel  (the soft spot on the top of babies’heads) to see the fluid levels within her ventricles.

After we were admitted to the hospital itself, we were taken to the Neuro floor. Well, we were told it was the Neuro floor. We were taken to our room and were shocked to find that we had a double room with a toddler (maybe 3-4 years old) and what appeared to be the entire extended family.

Little Miss Minion has only been to 4 places in her entire life: the NICU, our house, her pediatrician’s office, and my mom’s house. The concepts of isolation and quarantine were drilled into us at the NICU, and for good reason. She can escape the Hazmat bubble when she’s bigger and her immune system has developed more.

We talked to the nurses, who brought us the charge nurse. None of them seemed to understand the concept of prematurity and immunity problems. It was shocking. It took an hour and a half from that conversation to speak to the on call pediatricians who were following her jointly with the neuro team. We explained the situation to them and they seemed to not really understand the severity either. They managed to get us an empty patient room though, around 2am. We refused to leave her in the joint room with the family reunion going on, so we holed up in a consult room and planned on taking turns sleeping in her patient room, since her nurses told us we couldn’t sleep in the consult room. She had an IV port placed in the ER, and during our 5 hours in the consult room, no one came in to check on us or to flush her IV. If you don’t flush it, the blood will clot and ruin the IV.

After we were moved into a private room, our nurse pretty much ignored us. She came in once to check blood pressure, couldn’t get a good reading, said she’s be back, and never did. We were forced to wrap LMM in adult sheets because there were no pediatric blankets to be found. Her IV started leaking at some point, probably because it hadn’t been flushed. When they hooked up the fluids, they commented about how sluggish it was. I resisted the urge to tell them it was probably because no one flushed it. We also found out that the floor we were on, which we were told was a neuro-only floor, also had general pediatric patients on it. This means kids with actual illnesses, not just neuro issues. Kids with coughs, colds, runny noses, etc. Contagious things.

The empty room we were moved to had an isolation cart outside already. The nurses this morning assumed she was in isolation, and we haven’t corrected them.

What we’ve learned from this experience is that we will never return to this hospital. We will need to figure out how to arrange care for her at “our” hospital because the compete lack of common sense among 99% of the doctors and nurses is absolutely unconscionable. We were told during NICU discharge class that being a nicu grad is a big deal, medically. They told us that when we go to the pediatrician office, we are to tell them about her nicu stay and be placed in an exam room to wait or to go to the well baby room. We were told that she needs to not be in day care. Don’t take her to public places, like restaurants, grocery stores, the mall. Limit her exposure until she’s big enough and strong enough to handle it. I still cannot believe how we were treated here, how no one seemed to understand how big of a deal this is for her.

When we go back to her pediatrician, I will be getting a letter and/or a note made in her chart that she is to be isolated from other patients and their families. I don’t understand how we were told, and told often, about the need for isolation during our nicu stay and then have her placed in a room full of strangers. I will also be writing letters to everyone I can think of so that this doesn’t happen again to us, or to the family of any other preemie.

Her surgery went well. We can go back and see her in a few minutes. Neurosurgeon said we could be out tomorrow.