Tag Archive | neurosurgeon

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. 

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NICU Developmental Clinic

Every six months since she graduated from the NICU, Little Miss Minion has gone to the NICU Developmental Clinic for follow ups. Our first visit was nerve wracking. Only a week after graduating from the nicu, I had to transport my three month old to a medical center full of little kids (aka germ cesspools) and see how she was measuring up to her chronological age (spoiler alert:not very well, as was expected). We talked about her NICU stay…how she had come early due to my preeclampsia and HELLP syndrome…how she had stayed 84 days and developed sepsis, meningitis, and hydrocephalus…how she had endured brain surgery at 6 weeks old. They had me feed her, so they could see how she was handling the bottle and the Super Preemie sized bottle nipples. I left feeling like this was going to be our lives forever–shuffling her to and from various doctors and specialists. The weeks and months after that were as I’d expected. We saw pediatric neurologists, opthalmogists, hearing specialists, physical therapists, speech therapists, neurosurgeons, and our regular pediatrician. But as the months went on, the number of specialists began to dwindle as she “graduated” from their services. 

Today, LMM graduated from the NICU Developmental Clinic. I won’t have the official results for a couple of weeks yet, but here are some quotes from today’s appointment. 

“She’s absolutely perfect.”

“I can’t believe she has two shunts and presents like this.”

“I ran out of tests for this category. She blew it out of the water.”

“Didn’t she have some PVL (essentially, brain damage)? I am amazed at her development.”

The only thing we need to keep working with her on is expressive speech. The current theory is that she knows the words if they are given to her, but she has trouble “finding” them when she wants to use them. For example, if you give her a series of pictures and ask where is X, she will find it every time. But take those same pictures and ask “what’s that” and she has trouble. 

I’m happy to cross out another specialist from our list. If I’m not mistaken, this takes her down to just a pediatrician and a neurosurgeon, plus our early intervention team. She graduates from them this spring…and might even test out of the school district program that the early intervention shifts into at age three. 

All in all, it’s been a good day in the Minion household. 

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. 

Preemie Christmas Part 10

Having a cold can really derail things. 

On the 10th day of Christmas, the NICU gave to me: 10 specialists a-knocking, 9 dads kangaroo-ing, 8 moms a – pumping, 7 monitors chiming, 6 nurses charting, 5 needle sticks, 4 brain surgeries, 3 minute scrubs, 2 blood transfusions, and a micro preemie in an isolette. 

Preemies are often “followed” by various specialists in the nicu. Depending on their specific health concerns, some babies could be followed by several doctors in addition to the normal neonatologists. 
Little Miss Minion had a very diverse medical team looking after her during her 3 months, so get ready to meet them! 

1. Neonatologist: a doctor who specializes in preterm/newborn babies. These are the main doctors of the NICU. Every baby in the nicu is followed by the neonatologists. 

2. Respiratory therapists. These people are assigned to babies who are using any kind of breathing assistance, whether it’s a ventilator, CPAP, or cannula. They come in periodically and check the settings, adjust hoses, and generally make sure that everything is working perfectly. 

3. Physical therapists.  Even in the nicu, physical therapy is a big deal. PT is there to create a plan to keep baby’s muscles developing properly. Babies in utero have the resistance of the womb to push against, while “outside babies” have nothing but the special beds of the nicu, which aren’t quite the same. PTs are also the main players in keeping the baby from developing a flat head and/or torticollis, which is imbalanced neck muscles. 

4. Occupational therapists. This one threw me a little at first. What could a Preemie possibly need with occupational therapy? Turns out, they serve a pretty important purpose: setting the plan for baby to learn to use a bottle. Many preemies find bottle feeding to be easier than breastfeeding, Little Miss Minion included (see my previous posts about the joys of pumping). The occupational therapist determines the best position for each baby to feed in, the size of bottle nipple, and they pin point the stress cues that each baby exhibits during a feed. Little Miss Minion was fed by “pace feeding,” which is when the baby is propped up like they are sitting in a chair and the bottle is only slightly inclined. This allows the parent to control the flow of milk. She used an Ultra Preemie nipple for several months before graduating to the regular preemie nipple, and then FINALLY the regular newborn nipple. 

5. Opthalmologist. This is a medical eye doctor. Many micro preemies develop ROP, or retinopathy of prematurity. This doctor’s job is to monitor eye development and see if ROP is occurring or if other issues are happening in the eyes. 

6. Pediatric neurologist. This is a doctor who specializes in the workings of the brain. They make sure that the brain is functioning correctly, that the messages are being transmitted and received. This doctor can easily be confused with…
7. Neurosurgeon. This doctor also specializes in the brain, but in the physical function of it. In Little Miss Minion’s case, the neurosurgeon monitors her hydrocephalus and makes sure her shunts are working. 
8. Lactation specialist. This is a person trained to help new moms breastfeed or pump. 

9. Nicu follow up team. This is a group of nicu personnel who test and measure the progress that the preemie makes once they graduate the nicu until they turn 2 or 3. 

10. Pediatrician. This is the doctor that the preemie will see once they graduate. 

Neurosurgeon Follow Up

We had our semi-monthly follow up with Little Miss Minion’s neurosurgeon a couple of days ago. Every few months, she goes in for an MRI and a follow-up office visit to make sure that her shunts are working and that everything with her ventricles looks good. At our last visit, we were cleared for six months instead of three. At this week’s visit, we were cleared for ONE FULL YEAR!

Everything on her scan looked perfect, and the neurosurgeon even said that this is the best scan she’s ever had. The small area we were watching, near her ETV, is draining properly and has gotten smaller.

So, hopefully, it will be another year until we have to see this particular specialist again. She could, of course, have a malfunction or failure in either of her shunts or the ETV, but barring something like that, she is in good shape!

He also said that the speech delay we are seeing could be due to the PVL (periventriculoleukomalacia–brain damage), or due to just having hydro, or from being a Preemie, or she could just be wired that way. We are still super early in dealing with the speech issues, and she has actually improved a little since we started following the speech therapist’s suggestions. More on that in another post.

 

Hydrocephalus Awareness 


I first became aware of hydrocephalus in July of last year. Little Miss Minion was still in the NICU and I had gone back to work to allow for time off once she came home. I got a phone call from one of the neonatologists telling me that they had done a follow up head ultrasound (standard procedure to check for brain bleeds) and that they had noticed enlarged ventricles. I was told that a specialist would meet us at the NICU that afternoon to talk to us some more about what that actually meant. I immediately went on break and looked up “enlarged ventricles” on my phone. I read about brain damage, developmental delays, seizures, and death. The images that the search turned up were of babies with basketball sized heads. When Mr Minion and I arrived at the NICU and met the specialist, we were in shock. 

The specialist, who turned out to be a neurosurgeon, explained that the meningitis and sepsis that our daughter had survived a few weeks earlier had caused damage in her brain. Along with four tiny spots of periventricular leukomalacia (brain damage), the infections had blocked the third ventricle of the brain (which functions like a drain) and had also caused the brain to either create too much or not absorb cerebrospinal fluid fast enough, causing a buildup of fluid inside LMM’s brain. The only “cure” was to insert a man made drain into her brain: a ventriculoperitoneal shunt (VP shunt). This would become a pathway for excess fluid to drain out of her brain, where it would cause damage, and redirect it into a space near her stomach to be absorbed. 

Our preemie, who weighed about 4 pounds at the time of her surgery, underwent her first brain surgery at just over 2 months old. A few weeks after she came home from the NICU, she needed another. A few weeks later, she had another. And a few weeks after that, she had one more. 90% of shunts fail within the first year. 

Today, you would never know by looking at her that our daughter is a Hydro Warrior. The only physical signs are two shunts in the back of her head, now hidden by hair, some scarring where her ETV was done, and some scarring on her stomach from where the shunt drain portion was placed. All of the tubing is internal. However, we live in the shadow of Hydrocephalus. At any moment, her ETV could close. A shunt could become blocked or broken. She could get a shunt infection. Any of those things would be an emergency situation, requiring an immediate trip to the ER and would result in surgery. There is no way to cure hydrocephalus. There is only treatment. 

1 Month Adjusted

Yesterday was Little Miss Minion’s one month adjusted birthday! Today, she gave us two gifts: we each got our very own real smiles from her, and she kicked herself over from her stomach to her back.

I took her surgery bandage off today. My friend M is a nurse and said the tape would come off with baby oil. I could have sworn we had some, but we don’t, so I used sesame body oil instead. It took about 10 minutes and she smells wonderful. The incision looks pretty similar to the old one. It’s healing really quickly.

We’ve got another big week of appointments coming up. On Wednesday, her early intervention team meets to discuss her therapy needs. Right now, she will just be getting physical therapy. On Saturday, she has a pediatrician follow up. On Monday, she has a neurosurgeon follow up. On Tuesday, she has another physical therapy follow up from the hospital. I’m going to need a personal assistant just to keep these appointments straight.