What they don’t tell you about g-tubes Part 1

Confession.  Oral feedings use to be a huge battle for us with LJ. 

It’s really not uncommon for children with spasticity or even low tone.  We would spend many hours trying to get as many calories into him as we could.  We finally started limiting our feeding times to 30 minutes because beyond that, we would both end up in tears and he would be burning more calories then gaining.  No matter how often we tried to feed him, any weight gain was measured in ounces.  It was a slow process, but he wasn’t losing weight.

The biggest reason we decided on a g-tube (feeding tube) for LJ was because everytime he got sick, he would lose any progress we made.  Then, for some unknown reason, LJ starting gagging.  The GI doctor originally thought this was a viscious cycle of being a little malnourished (which started to occur after two illnesses in one month).  With both of these issues, we felt we didn’t have many other options.

I asked questions.  I talked to other moms.  I knew we weren’t doing it as a convience to us (although it has been a huge stress reliever).  We discussed fundos (fundoplications- a “treatment” for reflux) and after some testing and consideration, decided against it (it’s a more invasive surgery then the g-tube).  We made sure to stay 5 days in the hospital so he wouldn’t develop refeeding syndrome.

I didn’t realize the concerns we had before would be replaced by new ones.

In the hospital, we gradually increased his feeds until he was at 6 ounces of Pediasure, 5 times a day.  Sometimes we fed him while he slept and he did very well.  After a few weeks of being discharged from the hospital, we were told to increase to 7 ounces a feed.

That seems to be when the problems began.  He started vomitting after the 3rd feed of the day.  I thought his feeds were too close together so I cut two feeds down, one to 5 ounces and one to 6.  The vomitting continued and even started after his morning feeds. 

This is where we figured out how to vent him.  Venting is basically taking an empty syringe, attached to a tube, that you hook up to his button (g-tube) and let the air out of his tummy.  Like burping, but faster.  This helped a lot, but he was still vomitting.

We tried staggering his feeds, trying to have more time inbetween to digest but we always ended up feeding him at least once while he was asleep.  And this is disasterous since we can’t raise the mattress as high as we could in the hospital.  I was so freaked out that he’d vomit in his sleep and not turn over or wake up.  Unfortuneatley, insurance will probably not cover a hospital or sleep safe bed.  Heaven forbid it be convienent for him not to choke on his vomit.

We tried to reduce his feeds back to 6 ounces a feed, but his vomitting persisted.  Finally, we took out a feeding all-together and the vomitting greatly decreased (we also increased the other feeds to 7 ounces).  He’s not getting the calories a nutritionist might say he needs, but the way I see it is he’s getting more then he was before the g-tube and maybe just as much after getting it because of the vomitting.

I was never told that a little bleeding from the g-tube site was normal (they finally told us after a frantic phone call).  Or how much the actual button could move (quite a bit).  Or the granulation (extra skin) that could develop around the g-tube site if the button moves too much.  Or that oozing would be the normal.

I’m just frustrated that ALL of the medical professionals made it out to be like it would solve all of our problems.  If it wasn’t for reading other blogs or talking with other moms, I wouldn’t have known about these issues beforehand.  I think if I hadn’t known that there would still be issues we needed to manage, I’d be furious.  I hope this better informs parents of what to expect.

Despite some of these (minor) issues the doctors failed to warn us about, I’m happy with our choice.  LJ has gained 8 pounds since the surgery.  He’s filled out, has more energy, and when he gets sick, we’re able to give him the fluids he needs.  The downside is his oral feeding skills have decreased, but I think he may have been on this road before the surgery.  We’re still working on it and hope to one day not be so dependent on it.

Please note that I am not a medical professional.  This post was written based on personal experience in hopes to guide parents to be able to ask the right questions of their doctor.

Advertisements

Wheelchair and insurance blues

We had a wheelchair evaluation yesterday.  We actually had the DME Supplier (Durable Medical Equipment) come out in July to adjust LJ’s kid kart and do the evaluation then, but he informed us at the appointment our insurance required us to go into the seating clinic.  I thought this was a little ridiculous considering the professional we’d be seeing in the clinic know nothing about my son.  He could be having a great day where he’s having excellent head and trunk control when they see him.  Which means he probably wouldn’t get the support he needs during his bad days.  But whatever makes sense to them, right?

As I listed some of the options I researched, I could tell we weren’t going to get anywhere.  We discussed the different options in chairs.  Wheelchairs vs strollers vs pediatric chairs.  I guess we came to the conclusion that the chair we have is the best option for another year or so.  Considering my animosity towards the kid kart, you can imagine my frustrations.

We talked about future options.  The most frustrating part was how insurance kept coming up.  It really ticks me off the we have to think about what insurance MIGHT cover instead of what is best for LJ.  That’s secondary.  And with insurance, nothing is guaranteed.  Even if you have a pre-approval, they can still refuse to pay a claim. 

I found out the other week that when LJ’s insurance was switched to having straight Medicaid instead of having a provider through Medicaid, that coverage DID change.  First off, no one bothered to tell me they were switching his coverage.  I found this out after we had trouble getting one of his prescriptions filled.  But no one would talk to me since they failed to put me on his case when they made the switch.  I finally was able to talk to a medical liaison who told me that nothing would change in our coverage.

She was oh-so wrong.

Now we only get 20 visits for therapy per incident.  And less coverage for DME.  Oh, and we don’t get a case manager, which is insane to me, since according to what I heard, anyone who is switched to straight Medicaid probably needs one more than anyone else.  For those of you who aren’t sure what a case manager would do, basically she would know who we are.  She would know our story and she would be my go-to person if I had any issues.  Instead, I have to wait 30 minutes to get a customer service agent (who have been less the helpful) and then I get to spend time telling LJ’s life story.  Over and over.  And over. 

I know these issues are minute.  But when I think of other parents who struggles are greater than mine and I get worked up again.  There are so many struggles we work through on a daily basis.  So many battles we have to fight.  And we will stand up to the plate, over and over again.  But I can’t help but think it shouldn’t be like this.  Not everything should be a fight.

And yet, I expect it now.  I expect everything to come with a battle.  Every doctor’s and therapist appointment.  Every IEP meeting or school review.  Every time there’s a new prescription or a change in medical care.  Every time someone suggest a piece of equipment that could be seen as a convenience. 

I’ll continue the fight, as I know other parents will.  We do what we need to, for our children.  I know these posts can seem whiny and can come off like we’re trying to play up sympathy.  But it’s a reality we live in.  And you know what they say about a squeaky wheel.

Anyone got some WD-40?

Special Needs Link Love

I have discovered so many special needs web sites this past month.  It’s exciting and a little overwhelming!  I’d like to continue this edition of Special Needs Link Love (SNLL) every week, but I need your help!  Please send me sites you’ve discovered or even your blog link, with a little description, to OurYellowBrickRd@gmail.com

Roa Jo’s Journey– I relate to Roa’s mom, Jennifer, so much!  Apparently I had the wrong feed link on my blog and haven’t received the updates, but I’ve fixed everything.  Roa Jo is about a year younger than LJ with Quadraspastic CP.  I love watching him grown and his mama has a great writing voice!

TherExtras– Dr. Boucher site has a wealth of information that I’ve only begun to delve into.  She provides information on everything from child development to wheelchairs and standers.  You can tell the she works very hard to provide accurate and useful information.

The Stir– I love this Cafe Mom site, but I’m mostly there for Amy.  Her son, Noah, has Sensory Processing Disorder.  Her humor in these often stressful situations is a relief.  I’ve laughed and cried with her in the same post.  Even if you don’t follow her at her main site (you should!), you should check out her posts here, every Thursday.

Living with Special Needs– Shameless plug!  This is actually a fairly new site that I was asked to contribute to.  There are many other contributors, all of them with children with special needs.  Keep your eye out on this site as it continues to grow!

Parenting Children With Special Needs– This is actually a local magazine that launched its first issue in Aug/Sept by, who else, a mom of a sweet boy with special needs.  It’s the first of its kind in our area (KC).  I’ve been really excited about the next issue.  You can check out their issues online or support them and receive them at home for $10.  Be sure to read her story here.

Updates

It’s been a busy couple of weeks!  Here are a few reasons I’ve been MIA and some updates! 

  • We finally have a nurse!  It took going through one nurse and three different interviews to find her, but I think it was worth the wait.  She’s organized, flexible, and very helpful.  She’s open to learning therapies to do with LJ and isn’t afraid to push him but also knows when he needs a break.  It’s been a huge stress off my shoulders, giving me more time to work.  Now if only there were more hours available…
  • My dad moved.  I took it harder than I thought I would.  I think it’s because I realized he wouldn’t be within a few minutes drive where I could escape.  And complain with understanding and without being judged.  I’m proud of him, though.  I know he’s just doing what he needs to do.  I miss him though.
  • Insurance change.  We’ve almost always had Medicaid for LJ but we had a provider through them.  Well, when LJ got his G-tube, someone decided to switch him to straight Medicaid, without anyone telling me.  No letters or anything.  I finally figured this out after spending hours on the phone trying to talk to anyone because whoever had switched him, failed to put any of his parents on the case.  So no one would talk to us!  Finally, someone fixed it.  But I was told nothing would change about my coverage.  Of course, a few weeks ago I find out this is completely false. 

             I called the Rehabilitation Institute to schedule a day with the therapists to teach our new nurse some good things to do with him.  That’s when I learned that LJ is limited to 20 visits per “incident”.  Meaning Botox, which is complete horse shit.  I’m sorry, but every time I think about this the words WTF scream in my mind.  My son will forever have this disability and it’s much easier to intervene and teach him things now then it will be when he gets older.  As he get’s older, he’ll only get bigger and heavier, and it will be hard to learn new things because he won’t be used to supporting that weight.  He only get’s Botox like twice a year.  Maybe three times at most.  I almost wish I had never done it so they couldn’t use that crap against us.

            So I call to address this issue, demanding a case manager.  We had one when we had a provider, although she was fairly new.  But guess what, they don’t provide a case manager.  So every time I call in to appeal a case or discuss anything, I have to go into LJ’s life story to some customer service agent that only knows the basics of his coverage.  I’ve been trying to look for one I can hire (hopefully to be covered by Medicaid) but I’m really unsure of how to go about this.  I’ve been pretty unsuccessful.

  • LJ has been doing so good in school.  He’s been more vocal and I know he’s always doing something there.  They built him his own play area under a table where toys dangle that he plays in when he gets to school, before they start the day.  He loves listening and even looking at the other kids!  You might not think this is a big deal but LJ use to freak out in unknown social situations where there were more than 5 people.  He also never really looked at others because he couldn’t make out faces.  I can tell his vision and even comprehension has grown.  I’ve had two therapists this week tell me they swore he’s said hi back to them.
  • Kansas City Power and Light (KCPL) is the worst company I have ever dealt with.  I won’t go into detail about the story because it really doesn’t matter.  They obviously don’t care how their customer service agents treat their CUSTOMERS like dirt.  It’s sad because I know plenty of people who could use their job and would do it better.  The first chance I have that I don’t HAVE to use KCPL, I’ll take it. 
  • I have a really exciting opportunity that I’m not going to talk about yet.  I don’t want to jinx anything, but once it’s done, I’ll be posting it here!
  • Noah is walking steady!  He’s also been saying “ba” “da” and “mum”.  He’s getting so big.  I love how he’s starting to engage with LJ.

Everyone’s been sick in our household.  I’ve held up till this past week.  Here’s hoping I don’t get it as bad as everyone else did!

Special Needs Link Love

I’m always looking for new links for special needs.  So in order to keep y’all informed, I thought I’d do a Special Need Links Roundup with a little description of the links I’ve found.  Some of these are old news, but I thought since some might not know about them, I’d better start from the beginning.

To The Max!  This was the first CP blog I stumbled upon.  I don’t remember how I got there, but I’m glad I did.  Max is such a lovable boy and his mama, Ellen, is an amazing woman/writer.  She talks about many subjects including equipment, confessions of a special needs mom, and some subjects that may be a bit controversial (like use of the R word).

Bird On The Street Katy is a former special ed teacher with an adorable son, Charlie.  She has some great units on teaching your child and activities to reinforce the lesson!  Charlie is about LJ’s age, also with Cerebral Palsy.  I discovered her blog through Love That Max!

Elijahland! is another one of my favorites!  Elijah is also about LJ’s age with Cerebral Palsy.  Another adorable boy with some great parents, Lisa and Andy.  Andy also has a blog about CP treatments.  Elijah’s CP is similar to LJ’s, a result of oxygen deprivation.  I love watching videos that Lisa post about Elijah and celebrating his accomplishments! 

Special Child Exchange is probably one of my least favorite names for a group because, well, it sounds like your exchanging your child!  But really, this is a wonderful Yahoo! Group.  It’s actually two groups, but this site will lead you to both.  The board is just for parents to ask for advice, exchange information, and provide support.  You will find a great group of moms here and sometimes even find someone in your area.  The Equipment exchange board is for parents to post equipment.  You can find a lot of good pieces for reduced prices, many items used.  Some parents even post discounted clothes and toys that they find that really helps other parents out, especially during the holidays.

Danielle’s Foundation This is a wonderful resource for parents of children with Cerebral Palsy and/or Brain Injuries.  After submitting my information, they called me very quickly to talk about LJ.  The same day, I was sent an email of a list of local resources.  They also sent me a book on therapies, which I’ve only had a chance to glance through, but it looks like an amazing resource.  They provide links and guides to fundraising and the volunteers there are so helpful.  They also just started a grant program where you can apply for things that insurance won’t cover!  Or even just those “convenience” items like, oh, I don’t know, a high chair.

If you have any links you’d like me to check out, please email me at OurYellowBrickRd@gmail.com 

Emotions when your child with special needs goes to school

When LJ was a baby (he STILL is my baby) it was easy to overlook his special needs.  It was hard to tell how much his hypoxic-ischemic encephalopathy (brain damage) would affect  him. 

Even as he got older, since he was our first, it wasn’t difficult for us to turn a blind eye.  We simply avoided others with children similar to his age.  I stopped reading baby milestone books and removed myself from milestone websites.  I created a faux shelter for us.

Today, I dropped off some things at LJ’s school and sat in for an hour, just to observe.  I had to leave as I realized I was getting upset.  Don’t get me wrong, he’s in great hands.  I am confident, despite my pushy-mom attitude, in the teacher, paras, and therapists.

As I choked back tears on the drive home, I tried to figure out why I was so upset.  I went home and had a good cry, but I still couldn’t quite articulate why I was crying.

And then it hit me.  This was a scene I have been avoiding LJ’s entire life.  In the beginning, I had an excuse because he didn’t like crowd.  But now that he doesn’t mind so much, I realize it’s just me. 

I don’t mind that he’s different.  I was never part of the “in” crowd.   But I know how hard life is going to be for him.  I know he is going to have to struggle everyday.  I worry that he won’t have any friends (although he does have one in his class).  I worry that I’m not pushing him hard enough.  That maybe, if we do that hardest work now, it will be easier later. 

Today, during story time, they brought LJ to the circle in his stander.  He was a part of the group.  Yet, a part of me was thinking, why?  He has no interest in stories.  Couldn’t they be working on something more relevant to him at the same time?  But then I thought, well, I really like how they’re including him.  I was torn.

I’m really glad I don’t have to make those decisions every day.

It comforts me to know that the staff loves him.  That they see him and not just his disabilities.  That he has a cute little friend in a walker that adores him. 

But it really sunk in today.  I’ve known for a long time now that I would have to fight for LJ to have the best.  I would have to put a lot of work into finding out what works for him and to make sure he is getting the care he deserves (I’m not just talking school here).  I’ve known, watching him in therapy, with the other kids around, that life for him would be a struggle.  That life in general wouldn’t be easy.

Seeing it, though, made it hit home with me.  Seeing him, alongside his “typical” peers, really showed how different he is. 

It’s not that I feel sorry for him.  It’s not that I hate his disabilities or wish he was “normal”.  It just hurts.  It hurts to know that nothing will be easy for him.  It hurts to know that he’ll probably be excluded from many things because he just won’t be able to do it.  But it really, really hurts to know that one day, he might understand that he doesn’t get to do certain things because his body won’t let him.  Or that he might be excluded because he’s different.

Parenting Children with Special Needs Magazine Event

Saturday was a launch event hosted by Parenting Children With Special Needs Magazine.  I’m so excited about this magazine.  It’s going to provide so many resources to families and spread awareness.  I hope the magazine will make it easier for parents to find resources they need.  I know it wasn’t easy for me.

ANYWAY, the event!  One of the first things I really noticed was that I didn’t feel like everyone was looking at us.  Really.  I feel like people stare everywhere we go.  At the ranch, where the event was held, it felt like we belonged.  No one was judging us.  Everyone had a smile for us.  Volunteers weren’t afraid to talk to us or ask about LJ’s disability. 

We let Noah hit the “train” with my parents (Louie was out-of-town) while I got LJ’s feed ready.  I don’t think Noah really cared about it, but he didn’t NOT like it and it gave me time to get things ready, so it was a win.  LJ had a photo shoot while we waited.  It was quite bright out, so I’m not sure if she got a good picture.

Next, we hit the goats.  I was going to see if I could get the boys to pet them but the goats were too busy taking food from everyone.  I realized later that there was actually a petting zoo inside the barn that we walked right past. 

Then I thought it would be a great idea to get Noah (who, remember, is about 15 months) to have a pony ride.  We watched some kids go before us but as soon as I put him on the horse, he was twisted around, looking at all the other kids on the other ponies.  The volunteer was a good sport about it.

Afterwards we headed back to the crafts area.  I would have helped Noah make a crown, but he really hates wearing things on his head.  Plus, I’m pretty sure he would have eaten some glue or something.  So instead, we had the boys put their handprints on a poster with other kiddos and he had a little paint instead.  Good times.  

LJ's is the smeared brown one LJ’s is the smeared brown one at the top.

Next, they got to try playing with some shaving cream.  I really loved their sensory ideas.  I’ve been wanting to do more craft like projects at home, but was weary on how Noah would react.  I’m glad we got to test these things out because I know I’ll probably wait on things like finger-painting and chalk.  And shaving cream.  And glue.

He really didn’t like it at first, but then it wasn’t so bad!  Way to sneak in the OT!

I also got to meet the editor, Kara Cowie.  We exchanged information and I told her about the Facebook group I created for parents of children with CP.  Maybe one day they’ll feature a story about our family!

What a great event!  It seems like this month alone I’ve gotten 3 invites to different events pertaining to special needs.  It seems like they’re popping up out of nowhere!  I’m excited to attend the next couple of events and hopefully have more time to connect with other parents.  It’s really, really nice to know we’re not alone.

%d bloggers like this: