VP Shunt Malfunction #1

Well, it was inevitable. I just thought it wouldn’t happen so soon. I guess I should be lucky it didn’t happen sooner. Here’s what happened.

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Monday Morning, April 2nd: First sign of something being wrong
Ellisa seemed a bit irritable that night. Waking up now and then screaming and crying from what seemed to be night terrors. She fell back asleep in less than a minute with each episode. She rarely wakes in the middle of the night. Around 8:00 in the morning, she woke up again screaming. She NEVER wakes up screaming. I grabbed her really quickly as to avoid Hudson being woken and she did a strange gagging thing spitting up less than a tablespoons worth of “water’ on my shoulder. I held her upright in bed concerned. I thought she was coming down with a cold. Hudson woke seconds later from all the noise although 8:00 is wake-up time anyway. Charles grabbed Hud and they started looking at the ipad. After about 5 minutes, Ellisa popped out of it and became interested in the ipad too. The rest of the day she was acting herself–eating, drinking, sleeping, and playing as usual. I chalked it up to an upset stomach but kept a close eye on her knowing in the back of my mind it could be a shunt malfunction.

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Monday/Tuesday Morning, April 3rd:
Day and night were normal. No signs of anything being wrong.

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Wednesday, April 4rd: ER visit #1
Around 1:00 in the morning I heard Ellisa screaming in her crib again. I figured it was night terror since she’s getting older and most likely waking from dreams. As usual, she fell back asleep within minutes of waking. She did this again at 2:00, 3:00, and 4:00. When it happened again at 5:00 her screams sounded different. I went in her room to check. She was standing, screaming, and when I picked her up, she did the same gagging thing she did on Monday morning. “Strange” I thought. I turned on the light and looked in her crib to see if there was any vomit in it. There was. Nothing substantial, but enough to be concerned. I took her back to my room and held her the rest of the night. She slept great with me holding her.

I decided that morning to call her neurosurgeon to explain the symptoms. They told me to go to ER ASAP to rule out a shunt malfunction. So we did. I packed a bag, threw on clothes, and off we went. I wasn’t too concerned at this point because I could tell she wasn’t in any pain. Her symptoms were mild. I knew if it was a shunt malfunction, we had caught it in good time. I kept thinking I was being silly and it was most likely a stomach virus, or acid reflux, but my gut kept saying, “Take her in. Something seems off.”

ER: This place is a joke. I don’t know why they call it the Emergency Room when there is obviously no hurry from the staff. We first check in and I tell them the story, Ellisa’s history, etc… We are put in the waiting room. Less than 5 minutes later, a nurse takes Ellisa’s vitals. She screamed the entire time as if we were torturing her. She really hates being messed with. Nothing we did hurt her but…

Then we go to our own room. An ER doctor came in and I told her all the same stuff I’ve now told two other people. Does no one share notes? I’m really not sure why we have to repeat our story so many times. They take vital again. Really? We’re told Ellisa needs an x-ray of the shunt and a fast acquisition MRI of her ventricles. I could have placed those orders. Then we wait.

X-ray comes pretty fast. I think it was around 11:00 PM. Ellisa fused the whole time but it wasn’t too bad. Then we get sent back to our room. We play and hang out for probably 2 hours before we go to radiology for the MRI. I’ve done so many MRIs with Ellisa now it’s become pretty easy for me. She of course hates it.

After that, we get sent back to our room again. We wait. Dr. George finally arrives and tells us that he has reviewed the x-rays and the MRI. The x-rays show there is nothing wrong with the shunt. The MRI shows her ventricles have gotten slightly larger but nothing that “wows” him. He actually said that. He explains that MRIs aren’t perfect and it’s hard to tell if her ventricles are bigger at all. The imaging just isn’t accurate. He says he’s going to discharge her but he wants us to watch Ellisa closely and follow up Monday morning with another MRI. He leaves and we’re relieved.

About 30 seconds later I tell Charles I forgot to ask Dr. George some questions. Charles grabs him. I ask if it’s normal for a child to have an upset stomach at the same time each night (about 4 hours after falling asleep) and if I should keep her elevated while sleeping. He proceeds to say that the story I’m telling him makes him want to admit Ellisa into the hospital since it sounds like classic shunt malfunction behavior. He gives us the decision of admitting her or taking her home. If we admit her, they will hook up an IV to give her fluid and then give her an MRI in the morning. If we don’t admit her he wants us to come back in the morning for an MRI. We chose the latter option as we were sure she wasn’t dehydrated and there was no need to torture her in the hospital for the night. We left telling doctor George we would call him in the morning and scheduled another MRI for noon the next day.

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Thursday, April 5rd:
Ellisa slept great! I had her next to me in a pack ‘n play all night so I could watch her every move. She slept like a log and barely moved the entire night. I was convinced it was a stomach bug that finally had passed. The next day we went for a long morning walk, and played in the park all afternoon. Ellisa ate great and played hard. Happy as normal. Normal as normal.

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Friday, April 6th: ER visit #2
1:00 AM: I was woken to Ellisa moving around in her pack ‘n play next to my bedside. Obviously she was uncomfortable. I knew almost immediately she was going to get sick but I had to wait and allow her to get sick (Dr. George’s orders-Do not elevate her on purpose. Treat her like normal). I sat and watched her restlessly move around her crib. Grabbing her blankie and sucking her thumb,  morphing from one position to another, she was trying to find that perfect place of comfort. She never found it. After about 10 minutes, she stood up and started to vomit. She vomited twice. As soon as she started, I woke up Charles and we both tried to comfort her while she screamed and cried from seemingly shock and pain (I’m guessing burning acid in your throat and mouth). I knew then we were off to ER for a second time.

2:00 AM: Some experience as the first visit. Check in. Tell my story. Wait. See the first nurse. Get vitals. Tell my story. Move to our own room. Wait. Visit with a doctor. Get vitals. Tell my story again. Wait.

The doctor requested another fast acquisition MRI to compare it to the previous one from Wednesday. Me, Charles, and Ellisa try to catch some z’s while we wait to be taken back to radiology. We over hear our nurse on the phone outside our room answering questions that are obviously about our daughter. I say to Charles, “I wonder why our nurse is being asked so many questions about Ellisa?” Then we over hear our nurse complain to another colleague about the woman on the phone, the MRI technician. The technician who was on call that night didn’t want to come in until 6, so she was trying to determine if Ellisa was a true emergency or not. That’s not her job. I was furious and about to lose it until our nurse came in and told us that the technician was on her way. Our nurse apologized for us overhearing the conversation but that she also has a daughter with hydrocephalus, and she understands how serious a malfunction is. She was awesome. A true advocate for children and a woman who went into nursing because SHE wanted to help children. I only wish everyone is the medical field was in it for the betterment of the patients.

4:00 AM: It took awhile for the technician to get in (She looked too clean and together when we saw her. Something I could care less about when waiting to get an emergency MRI!). Once that scan was over, we went back to our room and tried to sleep until the ER doctor came back with radiology’s results. No one got much sleep.

6:00 AM: The results: Ellisa’s ventricles do not look any larger than her previous MRI. This does not seem to be a shunt malfunction. We will be sending you home soon, however Dr. George is coming in soon for another surgery and he wants to talk with you since you’re here. Hold on tight, he should be here soon.

2 hours later…

8:00 AM: Dr. George sent one of his nurse practitioners to talk with us. She came in all happy and desensitized to the issue stating,”Looks like you guys got lucky. It’s a shunt malfunction!” My response was, “Okay, is everyone looking at the correct MRI’s? We were just told it was NOT a malfunction.” She went on to explain that according to what I’ve told Dr. George, along with the symptoms that Ellisa is having, he is 90% sure it’s a malfunction. She added that the ventricles were slightly larger but not by much, and that ventricle size isn’t the end all to discovering a malfunction. She said that we were most likely going to go into surgery around 10:30.

The next hour or so was prepping Ellisa for surgery. They went ahead and put her IV in. Once a room was cleared in OR, we went up there and waiting until everyone starting coming in with questions. We met with a nurse practitioner, the anesthesiologist, another nurse (or two), and then finally Dr. George.

10:30 AM: Dr. George came in and explained everything to us again. By that time we were ready and didn’t have many questions. I told him to take care of my little girl and he almost started to cry saying, “Don’t worry. She’ll be fine. I promise you.” He left and 5-10 minutes later, we walked Ellisa to the OR doors. That’s when I finally cried. Letting her go was the hardest part because in the back of my mind I was afraid she might not return. But like Dr. George said, she was fine.

12:15 PM: Dr. George came in our room to let us know everything was fine. There was no hemorrhage, surgery went as expected, and Ellisa was doing great in recovery. And yes, the catheter was clogged. He replaced it and moved it back slightly since it had moved from its original placement. We were relieved to hear Ellisa was safe.

About 20 minutes after Dr. George left, we went to see Ellisa in recovery. A nurse was holding her when we got there and as soon as she saw me, you could tell she was relieved. She didn’t smile but her face calmed yet perked up at the same time. I held her tight and kissed her forehead. She was pretty out of it. I could tell her eyes weren’t quite focused and she didn’t want anyone else to touch her or hold her but me. Grant came in to visit next while Charles called his family. We hung out until Ellisa was ready to go to her own room.

2:00 PM: I won’t bore you with the rest of the details. I’ll just say that from that moment on, everything went pretty much back to normal. Ellisa started smiling, laughing, and running around like any normal toddler. But an hour after surgery? I really don’t know where she gets it. She’s one strong little girl. We had a nice time cuddling and playing the rest of the day, thankful her surgery went well.

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Saturday, April 7th: Discharge
12:00 PM: We booked out of the hospital happy to return to Hudson* and the comforts of home.

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• Ellisa got the word “Mama” down.
• Ellisa made a new friend, Scout, her favorite ER stuffed animal.
• Ellisa’s shunt was revised without any complications.

• Two ER trips.
• Two Exhausted parents.
• Lots of crying.
• Knowing Ellisa’s shunt will malfunction again and we’ll have to do it all over.

• Almost making Dr. George cry.
• Seeing Ellisa’s face after surgery.
• Watching Ellisa sleep peacefully after surgery.
• Laughing while Ellisa waved goodbye to every nurse and doctor that came in the room when they weren’t leaving. She wanted them out of there!

Lessons Learned:
• Trust your instinct. If mamma thinks something is wrong, 98% of the time it is.
• Vomiting at night (hormone levels and blood flow to the brain change) is a sign of a shunt malfunction. Especially after an extended amount of time.
• Put faith in your doctor.
• Children are strong and endure.

*Thanks Court and Jess for taking Hudson on while we were out. You two are life savers! It’s good to know he’s in good hands with family that loves him.

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5 Responses to “VP Shunt Malfunction #1”
  1. Michelle says:

    Glad to hear she is doing okay now. I can’t imagine how scary that all was for you. I agree that you should always trust your mama instincts. Those pics of Elissa with her little diaper showing out of her hospital gown are just too precious! Hope you all are getting some rest now. Sorry I missed tonights dinner.

  2. Catherine says:

    Sweet baby girl. So glad she is okay. I will never forget the first time I heard “normal hydrocephalic pressure”….definitely 1 or 2 revisions into the gig. I remember thinking to myself that “pressure” and “normal” shouldn’t be used in the same sentence, but these folks know a lot more than us! You definitely have the right doctor and the outcome was perfect. It’s great that you are chronicling this. Best, Catherine

  3. carey gooden says:

    YES, ALWAYS trust your mama (and papa) instincts!!!!!
    Medical staff gives you their best guess — an educated guess, but still a guess!!
    You handled everything just RIGHT!!!!
    You know that you will ALWAYS be her best source of information!
    ALWAYS keep insisting!!!
    And YES, you can trust her doctor if he almost cried……

  4. Sarah says:

    What an ordeal, but it seems like you and Charles handled it perfectly. Glad she’s okay.

  5. Joe says:

    Wow. It is amazing how much you pay out of your pocket for health care and you, at times, get sub-standard service. It was unbelieveable how many times you had to repeat yourself to staff. Glad to hear all is well in the end. Hang in there!

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