Archives for category: hospital

Last Friday, we saw Lizzie’s neurologist.  Lizzie hadn’t had a seizure in over four months, and we were discussing how well she was doing, and how we would maintain what she was doing, and not change anything.

I was feeling pretty good about where she was with seizures, and the doctor and I had even thought we had discovered a connection between her recent breakthrough seizures, because a few months ago there was a shortage with Lizzie’s one medication, and for several months we were bouncing back and forth between the brand name seizure med and its generic counterpart.  I asked the doctor if this could cause seizures.  She seemed to agree that must have been the cause, because there was nothing else we could attribute it to, and because once we maintained the name brand the breakthroughs had stopped.  She even gave us a new prescription with the “Do Not Substitute” box checked.  Problem solved, right?

That night, one of our friends came by with Christmas presents for the kids.  We opened the gifts, and visited.  Lizzie was not as into her unwrapping as she had been at Christmas a week earlier, but she was still managing.  She was biting everything she could, which was odd, but not unheard of.  Our friend left, and my son and I were sitting on the couch watching TV.  Lizzie fell asleep in her chair during her feeding.  It was not the first time, and I figured that I would just wait until her feeding finished, and then move her to bed.  Then her eyes opened.  Her tongue was sticking out, and her lips were bluish.  I went up to her and touched foreheads with her.  This is how I draw her attention when she’s not focused or preoccupied with something.  She seemed to look at me.  She was making a clucking in her throat, but then she threw up.  Now I wondered, was this a seizure?  Is she sick?  She threw up a lot.  I cleaned her up, and left her sitting, because I wanted to be sure she was done, before I laid her down.  The last thing I wanted was for her to throw up laying down and aspirate.

After a few minutes, when I was sure she was done, I started moving her to her bed.  I got through our kitchen, to the hallway, and saw her foot bouncing.  I spun her around, and back to the front room, because her emergency meds are in her diaper bag there.  I grabbed her meds, and threw a blanket on the couch, while watching her and watching the clock.  My son informed me she was having a seizure.  I told him I knew, and sent him to get a blanket from her room.

I moved her to her couch, now at almost three minutes.  I gave her the meds while calling 911.  Threw the blanket over her, and told my son to wait by the door, and let the paramedics in.  This is usually Daddy’s job, but he was at work.  They took her to the hospital, and my son and I followed in the van with the wheelchair.

My son, only ten, was very helpful and attentive.  Once Lizzie was in the ambulance, and I was gathering what I needed for the hospital.  He went outside, and got the lift down for her chair.  He had his shoes and coat on when I asked (normally an agonizing feat).  But my proudest moment was when we were in the ER.  Lizzie was having her third seizure (or fourth if that vomiting episode was a seizure), and the nurse was waiting to give the meds.  Seizure meds are strong stuff, and they don’t want to over medicate anyone, especially a child.  When Lizzie had gone two minutes and they had flushed her line, the nurse informed us that she would wait another 30 seconds, and then give the meds.  Then she got a phone call, (being the charge nurse, she had it with her), and all of a sudden I heard a voice behind me say, “It’s been 30 seconds, give her the medicine.”  I had been so busy watching Lizzie, I hadn’t been watching the clock, but Michael was.  He made sure his sister got that medicine.  I was so proud of him for watching out for her.

Thankfully, that was the last time she had a seizure.  The only thing that showed up on her labs (AGAIN – sigh) was her low sodium level.  My husband finally arrived, having left work, and Michael went home with a sack of sliders and a chocolate milkshake.  Lizzie and I stayed the night, and finally got to go home the next afternoon.

Unfortunately, no one is in the office to make our follow-up appointments today, due to the holiday.  What I am going to ask is if there is anything we can give her, like a supplement, to bring that sodium level back up.  I know they are not going to want to take away the med that’s lowering her sodium while she’s having breakthrough seizures.  So, where does that leave us?  So much for doing well, and staying where we are.  Comfort and epilepsy do not go hand in hand.  Shame on us for letting our guard down.

It’s funny, a while back a friend of mine expressed surprise when I said that epilepsy scares me more than hydrocephalus.  This episode gave me a chance to think about that again, and reconfirmed my reasons behind that feeling.  Usually, with hydrocephalus, if your shunt has an infection or malfunctions for some reason, you have symptoms, some kind of warning.  And there is an answer (shunt problem) and a possible fix (shunt replacement).  But epilepsy is a strange beast.  It sometimes strikes without warning, when everything on the surface seems fine, and there is no answer as to why.  I wish that epilepsy was an opponent we never had to face.  It doesn’t play fair, and makes up the rules as it goes along.  We don’t want to play anymore, but we have no say.  Epilepsy sucks!


Today we went for a follow up to the orthopedic surgeon.  He looked Lizzie over.  Checked out how her braces are fitting.  He also had us take an x-ray of her pelvis to check out the hips he did surgery on back in June.  I was happy to receive a phone call this afternoon stating that her hips look great and we don’t need to see him again until next June.  Unless of course something else happens, or her braces need adjusting.  It’s a relief to have this taken care of.  One more appointment out of the way for a while.

When we were waiting for our van at the hospital’s valet, we noticed a familiar man in a bright red suit unloading a minivan full of toys onto carts to take to the children in the hospital.  Michael said, “Look, Mom, it’s Santa!”  After our van had pulled up, and we were getting ready to load Lizzie, the man in question materialized next to us, and told Michael he needed to be good.  Then he looked at Lizzie, stroked her cheek, and said, “I know you’re always good.”  To which Lizzie licked his glove.  I was silently praying she wasn’t going to bite Santa right then and there.  Santa produced two beanie babies, a black bear for Michael, and an otter for Lizzie (which she amazingly held onto until we were in the van which is unheard of).  Then with a twinkle in his eye, and a wink to Mom, he went back to his skids full of toys.  It was a nice surprise.  Michael actually voluntarily helped me load his sister after Santa’s visit.  Ha ha ha!  Or should I say, “Ho ho ho!”?

Last night I had to perform the heartbreaking task of keeping a sleepy seven-year-old awake so that she could go to the hospital today and have an EEG performed.  Per the hospital’s instructions I was to calculate how much time my daughter usually sleeps and cut that in half taking equal time off the front and back of her bed time.  This in my case was more of an educated guess, because Lizzie rarely goes to sleep at the same time, and is usually up at 5:00 a.m. when my alarm goes off.  Since she’s usually down for the count by 10 at the latest, I used 10-5 as my sleep time.  Cutting that in half to 3 1/2 hours I kept her up until midnight, when her eyelids were so heavy she couldn’t lift them, and woke her up at 3:30 a.m.  I felt like an evil villain in a Disney movie going in to wake her up at 3:30.  She was curled up on her side, sleeping peacefully.  She fought me waking her, trying to hold on to the remnants of sleep.

Last time Lizzie was in for an EEG, it did not go well.  I kept her up all night, but she fell asleep during the 10 minutes I tried to park, and would not fall asleep.  She screamed the entire test time, saying over and over again, “Aw, duh.”  Which is Lizzie speak for, “I’m all done now, take me home.”  She broke my heart.  So I was not looking forward to this test.

Again Lizzie surprised me.  At first they tried the distraction approach.  They gave Lizzie an extra set of wires and leads to hold.  She loved that, up until they tried to get her to lay her neck on a towel roll to get the leads on her head.  Lizzie moved off the roll to the flattest part of the bed, more than once.  That’s when they got the idea to pappoose her.  I did not think that would go well, but Lizzie didn’t mind it as much as I thought she would.  They wrapped her like a newborn (arms tucked inside the sheet) from her neck to her waist.  Then they put the leads on her head, and wrapped her head in bandages.  Lizzie squirmed in the dark for a while, but she couldn’t move much.  I laid next to her on the bed, to make sure that she didn’t fall off.  She was repeatedly thumping her butt up and down on the bed, since her legs were the only part that was free to move.  I laid my leg over her stomach, and she finally settled down.  She kept licking my face in the dark (the only part of her she could reach out with), and bashed into my glasses once.

I dozed off for a moment, having stayed up all night.  When I woke up she was finally asleep.  After a while of listening to Lizzie breathing in the dark, the tech popped into to tell me that there were going to do the strobe light part of the test, and then it was over.  All in all it went very smoothly, and was done in an hour and a half.

They told me that they were going to have the results back probably by Tuesday, and that they got good data for the doctor.  Hopefully all goes well.  I can’t wait to find out what is the results are, then we’ll know where to go from here.

Yesterday should have been the first day of school for Lizzie.  We took her brother to school, and were coming home to have a feeding before her first day.  It was a half-day; afternoon only.

We came home, and Lizzie was acting a little out of it, but sometimes her medications make her sleepy.  I started getting her feeding ready, noticing that she was kind of staring off, up at the ceiling.  Lizzie’s never been known to have what are called absence or staring seizures, but I wondered if she was having one.  I tried to make eye contact with her, and she moved her head.  I thought she was okay; just tired.  I set up her feeding, sat down across from her, and saw her leg twitch.  Then her leg started bouncing, and then her arm got in on the act.  I looked at the clock, and dug her Diastat (emergency seizure medication) out of her diaper bag.  I stopped her feed, because during or after seizures it’s common to throw up, so the less in your stomach, the better.  Our typical procedure is if her seizure goes more than 2 1/2 minutes we give the Diastat and call 911.

I moved her to the couch, and got the Diastat ready.  Then the seizure stopped.  I watched her closely.  Her breathing was raspy, but other than that she seemed okay.  I sat with her and waited to see if she would recover.  That’s when the second one started; her leg and arm started bouncing again.  I gave her the Diastat and called the ambulance.

This was the first time I’ve been on my own when Lizzie’s had a seizure.  Usually I stay with her, and my husband meets the ambulance and lets the paramedics in.  I called to them to come in, but forgot I had locked the door to keep our dog from getting out.  So, I let them in. This was also the first time I followed her to the hospital, so I could have my car and her wheelchair.  It was very strange not riding with her.

The second seizure was the last one she had, and had stopped by the time the ambulance arrived.  After several hours in the ER, they sent Lizzie to the floor for overnight observation.  As a result of her stay, we are increasing the newest of our seizure medications, which will hopefully stop the breakthrough seizures we’ve had the last few months.

Her sodium levels are still low, but that is a side effect of one of her medications.  I did learn that if the sodium levels get too low, that can cause a seizure, also.  Though we don’t know if this had anything to do with her seizure, because her numbers are usually borderline low.

They are changing her diet again; she’s lost a little weight. The only sure way to tell if her g-tube feeding is not enough is that she loses weight (or doesn’t gain for too long a time).  When the loss is slight it’s hard to know that it’s happening.  Often you don’t know it’s happening at all until it’s significantly different, or until you are in the doctor’s office or hospital for something else, and notice that the weight has changed.

But seeing the tornado she is in the bed, they weren’t surprised, she needed more calories.  The girl is constant movement.  So, up we go with the feeding again, so we can continue to grow.

It’s hard having a g-tube.  If you can eat and know you’re hungry, you just eat more.  If you are non-verbal, and have a g-tube, you can’t tell someone that you need more and are still hungry. That’s if you are even aware of it yourself, and I’m not sure Lizzie is aware when she’s hungry.  Like I said, it’s hard when you can’t talk.  (Although, yesterday for the first time, after we’d been in the ER for a while, the nurse and I talked about her feeding, and Lizzie looked at me and said, “Ba ba ba” and touched her g-tube.  I realized she hadn’t eaten all day since her morning feeding had been so rudely interupted by her seizure.  I wondered if this was her saying, “Yeah, I’d like a baba,” or if it was just her making sounds (she always touches her button.))

So we are increasing calories, and will be maintaining visits with a nutritionist to make sure that we continue increasing as needed, and haven’t over adjusted the feeds (in which case she might gain weight too fast, a problem because seizure meds are based on weight, and if you gain too fast, levels could drop causing a seizure).

The important thing is, we are heading home tonight.  Yay!

When Lizzie was little, getting sick was never a good thing.  We worried about fevers and seizures.  We gave medicine and fluids through her g-tube, and nebulizer (breathing) treatments multiple times a day.  We thought we were getting pretty good at managing those bumps in the road, and then she got really sick.  Nothing could have prepared us for this.

It was the spring of 2006, and Lizzie wasn’t even 2-years-old.  Lizzie had been irritable that day, but nothing out of the ordinary, and no fever.  We had all gone to bed as usual, when I woke up feeling like something was wrong.  I could hear strangled, choking noises coming from the other room, and I asked my husband to check on Lizzie.  My arthritis was acting up, and I knew he’d get there faster than I would.  It was about 4 am, and Lizzie was in the middle of a full-blown seizure in her crib.  She burned my skin when I touched her.  I told my husband to call 911.  Her temperature was over 103 and must have spiked in the middle of the night.  That’s what triggered the seizure.

The ambulance took us to the ER, and it was at least 45 minutes from the time we found her to the time the ER staff finally stopped her seizure(s).  She had to be put on a ventilator and went straight from the ER to the ICU.  This hospitalization would last nearly a month from beginning to end, and would be our worst by far.

Lizzie had been in the hospital for five days and we knew by then that she had a nasty bought of the flu (Influenza A), which then went into pneumonia.  I sat with Lizzie for a while that day and left the hospital in the evening to go pick up her brother at Grandma and Grandpa’s house.  I was planning on going home to sleep, then going back the next day.  We had just finished dinner at Grandma’s, and the phone rang.  It was my husband.  The hospital had just called and said we needed to be there, NOW.  It was around 10 o’clock in the evening.  I was shaking.  My dad told me he’d drive, and my mom said she’d take care of Michael.  I remember he looked at me with these big, sad, four-year-old eyes, and said, “But, I thought you were coming to get me?”  It nearly broke my heart.  I had to explain to him that I had, but that Lizzie was really sick and I had to go back to the hospital.

When we got there, there were several ICU staff in the room with Lizzie, and they asked us to wait in a room down the hall.  A few minutes later a man came in and introduced himself as the chaplain.  Believe me, you never want them to put you in the room with a chaplain.  It can never mean anything good.

It turned out that Lizzie’s lungs were not healing.  Being on the ventilator wasn’t helping, and they wanted to try her on something called an oscilating vent.  Unfortunately, Lizzie did not tolerate this machine.  They tried at least two separate times to hook her up to it, and she tanked each time.  That’s my daughter for you, if she doesn’t like something, she’s not going to cooperate, and she lets you know.

I spent that horrible night crying; afraid we were losing her.  My husband kicked the chaplain out of the room after a while.  It was hard to discuss what we had to and feel what we were feeling with a stranger in the room.  I know he meant well, but to us he was more of a bad omen than a comfort.  We weren’t quite ready to close up shop.  I think I prayed harder that night than I ever have.

Finally, a doctor came into the room.  He was not very optimistic looking, and he told us that there was one more option they could try.  It was something called ECMO (extracorporeal membrane oxygenation).  Basically, the way they explained it was that they would remove the blood from Lizzie’s body, add oxygen to it, and replace it.  In other words, they would bi-pass her lungs, and hopefully give them time to heal.  Then he explained the odds to us.  ECMO was only suggested if there was or less than a 10% chance of survival, and if she responded well to it, there was a 90% chance of survival.  With odds like that, there was really no choice to make.

The room was so quiet that you could hear the machines whirring and hissing.  The machine looked like something out of a Sci-Fi movie.  It was so huge it had its own cart, and came with a set of technicians who monitored 24 hours around the clock.  The tubes coming out of Lizzie’s neck and going into the machine looked too huge to be real.  She spent 14 days on ECMO, and 3 weeks on a ventilator.  They gave her numerous blood transfusions during this time, because the red blood cells get pretty beat up as they go through the process (one tech described them as shredded).  I sat quietly by her side, and waited for her to improve.  After two weeks, she finally had oxygen saturations high enough to get off of the ECMO.  A little over a week later she came home.

She’s thriving now.  Every year as her birthday approaches, I think about how we almost lost her before she was two.  It amazes me how far she’s come and how much she’s done since then.  I thank God for helping her survive that awful time, for making sure I heard her the night it all started, and that she’s still here.

I once had a nurse argue with me that hospital policy was what was best for my daughter.  “Hospital Policy” meant that I was supposed to leave my daughter in a metal crib with all sorts of tubes and wires hooked up to her.  Now let me explain something about my daughter; she is very active, and not very understanding about proper hospital bed behavior (for instance: that most people in hospital beds lay quietly in hopes of getting better).  I argued as best as I could that Lizzie would be much better off, and much safer, in her wheelchair than she would be in the bed.  My thinking, (knowing my daughter as I do), was that as soon as I left, my daughter would be rolling, doing the Curly Shuffle, and causing utter chaos.  Of course, they didn’t believe me, and argued that they knew best.  Hospital policy, and all.

Well, the hour got late.  And as hard as it was, I had to leave.  My son was getting out of school, and with my husband at work, I was the only one able to pick him up.  I packed up my things, kissed my daughter goodbye (while imploring her to behave herself), and scooted out the door, announcing as I did to the nurse on duty that I had left her in the crib as instructed.

A half hour later, my son and I returned to the hospital.  As soon as we got off of the elevator on the floor, I heard her.  My daughter, singing her little heart out in her sing-song manner.  I found her, in her glory, safely in her throne at the nurses station.  The same nurse who had lectured me about hospital policy a half an hour earlier came up to me and said, “Five minutes after you left, we realized that leaving her in the crib was not going to work.”

Really?  Why didn’t I think of that!