Archives for category: g-tube

Well, 2014 and the new insurance changes have brought about the kind of changes I anticipated.  Our family was not allowed to keep our existing insurance, because due to insurance rule changes my husband’s employer decided to go the cheaper path.  Now we have insurance that will not cover my daughter’s formula even though she is g-tube fed and her life depends on it.  It is not supplemental nutrition, it is her nutrition, but that doesn’t matter to Cigna.  Our previous insurance covered all of her formula as long as it was her only form of nutrition, which it is.  Not our new insurance. Apparently, they don’t care if she gets fed.  To add insult to injury, we are paying twice as much for this insurance, which covers less and requires us to pay a percentage on everything they do cover (what that may be remains to be seen).  We do have Medicaid as a secondary, but due to my husband’s income we have to pay a premium for the upper level of that, so that’s costing us more as well.  Right now we are waiting to see if Medicaid is going to cover her formula.  I am holding my breath, because her formula is nearly half of our entire income, and there is no way we can afford it out-of-pocket.  What are we supposed to do?  As it is, like a lot of families, we barely make it week to week, and now with all these extra charges I am really afraid for the first time in my life of how my family is going to survive.  These insurance changes that were supposed to be a blessing to everyone are really screwing us over, so thanks a lot.  Affordable healthcare? I wish I had the energy to laugh out loud at that one, but it’s really not funny.


Diego, for those who don’t know, is Dora the Explorer’s cousin.  He has his own show which is on Lizzie’s favorite channel, Nick Jr.  Usually when I set up Lizzie’s feedings at home, I put her in her wheelchair and turn on either Nick Jr., or a Disney video for her to watch.  Yesterday, when I went to unhook her feeding, I went in her room and Diego and his sister were singing “Clap, clap, clap,” repeatedly.  Much to my shock, my daughter was clapping along!  I have never seen Lizzie mirror or follow directions from anything by choice, let alone a TV show that is not actively trying to get her to interact.  I asked her, “Lizzie, were you clapping?”  She smiled at me, and started clapping.  Really clapping!  Not just the maybe hit or miss occasional clap, but active clapping.  I almost cried.  I think that this may be related to our weaning the phenobarbital, and may be a new skill developing.  I started to think about how, if she can mirror actions, maybe speech may start to develop, too.  I am so excited to see what may lay ahead.

Today is Lizzie’s birthday and she is now eight-years-old.  I made a list of Lizzie’s progress.

Miss Lizzie – Age 8

In addition to everything on her “can” list last year,

Lizzie can:

Cruise her railing on her bed.

Turn her feet the right way while standing in her crib.

Open and empty a drawer (much to Mommy’s chagrin).

Operate a light switch when prompted.

Move her chair along if she has a wall or dresser to push/pull off of.

Stand and empty toys and books from bins.

Lizzie can not:

Walk independently

Talk (except for the occasional Mamama and All Done)

Use the bathroom

This year Lizzie started:

I’m walking here!

Walking with a gait trainer at home.

Riding a tricycle at home, that we push for her.

Sitting up better, for longer, and sometimes sits to play rather than laying all the time.

Getting better at handling foods and liquids by mouth (More swallowing, less coming back out, still not more than a couple of times before boring/tiring).

This year Lizzie had trouble with:

A repetitive bubble on her g-tube

This year Lizzie received:

NO new diagnoses and no seizures for 7 months today.  YAY!

1 new seizure medicine :  Topamax, which brought the total to four with Phenobarbital, Keppra and Trileptal.  Then we said goodbye to Trileptal (three) and now are weaning Phenobarbital.  Hopefully she’ll only be on two next year.

Check out my cool new ride!

A gait trainer and a tricycle.

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!

Okay.  I have had it.  I wrote yesterday about our wasted visit to the hospital to see a surgeon who did nothing but ask us to come back Friday.  I was already angry about that.  This morning they called me and said that the doctor will be going out-of-town tomorrow to have surgery of his own, and would we be able to come in next Wednesday.  I think my heart missed a beat, and steam may have shot from my ears.  I lit into his assistant.  We were just there yesterday and he did NOTHING.  We were brushed off and asked to come back on Friday.  Are you seriously telling me that he didn’t know he was going out-of-town to have surgery of his own?  I’m sorry, I have a tendency not to believe this, as we’ve been brushed off by his partner for sudden out-of-town excursions.  It is unbelievable at this point.  I was told that we could see him Wednesday.  That’s my son’s first day of school.  She said, well we can get you in early he starts at 7:30.  I repeated, that’s my son’s first day of school, and he goes from 8:30 to 9:30.  She then told me that we could see the partner (the first doctor to blow us off numerous times) on Monday instead.  I said at this point I didn’t care who we saw, as long as someone actually took care of this.  Yet, somehow I ended up with an appointment on Wednesday at 11:00.  I am livid.

I am pretty sure, that by this time next week her abscess will have dried up and there will be nothing they can do.  Then a week later it will crop up again, and the surgeon will probably be on vacation again.  I am beside myself.  This is ridiculous.  These doctors seem to spend more time out-of-town than in.  Is that anyway to run a practice that is supposed to take care of kids?  I pray to God that we never need actual surgery from these guys.  I am sure getting a follow-up appointment is a joke.

We went to see the surgeon today about the abscess by Lizzie’s feeding tube.  They called me back yesterday, and told me they had an opening at 9:00 am, and could we make it in?  Of course I jumped at the appointment, thinking we were being made a priority.  Then I was told that the doctor would be squeezing us in.  Between surgeries.  How that is an opening to see the doctor, I don’t get.

So, we went today.  We only waited about 20 minutes, which surprised me, because with our “standby-for-an-opening” status I expected to wait an eternity.  However, we got in the room, the doctor came in, looked under Lizzie’s bandage, and said, “Looks like we have a small abscess there.”  No, really?  Why did he think we were there?  We just happened to have an appointment, and oh goodness this abscess just cropped up.  I mean, really, did I need him to tell me what it was?  We made the appointment because there was an abscess.  I needed him to find out what is causing it.

So, he says, “Do you live nearby?”  I thought, Why?  Are you coming by our house later to take care of this?  Then he says his next patient was being put to sleep, and asked if we could come back Friday to have the actual digging and cauterizing done.  I mean, as if that wasn’t horrible enough the first time, now I have to anticipate it for three days?  It’s times like this that I am grateful that there are things Lizzie cannot understand.  How horrible would it be if she had to anticipate this for three days?

The assistant tells me, “We’ll just give you back your co-pay and your referral, and it’ll be like today’s visit never happened.”  Maybe for you.  But you weren’t up late last night with a sick dog, who you weren’t sure would make it, only to get up, get ready, get your kid ready, get her feeding ready, get her medication ready, load her in her wheelchair in the car, and head to the hospital (wasting gas and money), breaking your neck to be there by 9 am, only to go to an appointment that on the books never existed.  Really?  I wish we hadn’t gone.  Why couldn’t they have just scheduled us for Friday in the first place?  The last few times, when our pediatrician called to get us the appointment and the abscess was really angry-looking and draining nasty stuff, did they care about us coming in right away?  Did they break their necks to get her in?  No, they told us the doctor was on vacation, and how would it be if they fit us in a week and a half from now?  Now, when the abscess wasn’t that bad, we called to make our own appointment, and they had no time to see us, they squeeze us in only to be basically rescheduled?  Does that make sense to anyone else?  Because it sure doesn’t make sense to me.

I’m hoping we finally make some progress and get to the bottom of things on Friday.  This is getting to be a nuisance, and Lizzie and I are so ready to be done.

Lizzie has had a g-tube (gastrostomy feeding tube) for many years.  It’s been pretty easy to use, and we haven’t had much issues with it, until recently.  Within the last 3 months, she has had repeat infections in her g-tube area.  The stoma, which it the circular opening that surrounds the plastic tube, has been getting a bubble on it, which then fills with pus and drains.  We have done multiple courses of antibiotics, and had it opened up by a surgeon more than once. It just keeps coming back.

The last time it cropped up, back in June, we visited a surgeon, who cauterised the infection.  This is the worst experience I have ever been through with Lizzie.  They gave her a shot of lidocaine first, which I’m not sure did anything really.   Then after a few minutes, the surgeon used a pair of scissors to cut off the top of the bubble.  That wasn’t really the bad part, Lizzie was mad about being held down, but not about the procedure.  They cleaned out the pus, and looked around inside the wound (the theory being they would find a surgical stitch or some other foreign body in the wound that was causing it to fester).  When they didn’t find anything, they took out the silver nitrate sticks.  I thought they were going to just burn off the edges of the wound.  I was caught off guard when the doctor stuck the stick into her wound.  She let out a scream, like I’ve never heard.  And a few thoughts went through my head: 1: Thank, God, her brother wasn’t with to watch this., 2: why would they make me help hold her down for this, 3: (and most importantly) poor Lizzie.  It was horrible, and seemed to take forever.  She screamed through the entire procedure, as I tearfully apologized over and over again.  I was shaky afterward, and my heart took a while to return to its regular beat.  Lizzie slept afterward, obviously because she was exhausted from the ordeal.  The ironic part was, Lizzie has been to the hospital for much lesser events, and given stuffed animals and toys, this time, after her horrible ordeal, she didn’t get as much as a sticker.  It seemed wrong somehow, like adding insult to injury.  I mean not that they should give her something every time she goes, but with something that awful it seemed she should have something to make it up.

The scar looked black and burnt for a couple of days, and then slowly healed.  At first it didn’t come back, and I began to think that at least the trauma had been worth it.  Until this week, when the bubble returned.  I took Lizzie to the pediatrician on Friday to have it looked at.  She didn’t even give us an antibiotic this time, just a referral back to the surgeon.  I couldn’t even bring myself to make that call on Friday.  I’m not ready to put her through that again.  Don’t get me wrong, I will call first thing on Monday morning.  In the mean time, I’ll be praying it resolves on its own again.