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.

So much for taking some stress off

Well, we’ve already been through 1 nurse and 2 agencies.

From the start, I knew I’d want to meet the nurse before having them assigned to us.  I’m glad we did because the first nurse they sent us lived 80 mile away.  At the time, we were asking for 10 hours a day, 5 days a week.  It’s a lot but financially we’ve been hit pretty hard with all of LJ’s therapies, annual appointments, and his surgery.  Right now it’s a busy time at my work, so I was hoping to try to catch up on some hours.  When school started, we would reduce the hours. 

We decided to go with a different agency, since the first one didn’t seem to use common sense (hello, what would we do in the winter time when it snowed?). They said they’d send someone out Thursday but they weren’t sure what time, so they would call before hand.  No one showed up.  No one called.  It wasn’t until the next day that the agency called and explained that he didn’t have all his paperwork in, blah blah blah.  Ok…

So Monday rolls around (the day of LJ’s EEG, so we were sleep deprived) and I get a call early in the morning.  The lady asks, do you not need a nurse today?  I’m like, what is going on?  No one told me you were coming and I told them I had to meet the nurse before signing up with her.  She apologizes and I feel bad for her coming out for no reason.  But really, I was not with it that day.

We finally meet her the next day.  She’s perfect.  Plenty of experience in pediatrics, plenty of home nursing care experience, has kids, seems very sweet.  I tell her about the schedule change when school starts and she nods.  She didn’t start until Friday, which I find odd, since she was suppose to start Monday, she should have had her whole week free.

Everything seems to be going well.  She tends to do things her way, which is alright.  There are a few things that we’d like to do our way, for consistency and so LJ can anticipate what’s happening.  I start talking about school, routines, therapies I’d like her to start working on, after she’s had some demonstration with our therapists.

Last week, LJ had to have a follow-up GI appointment.  His button has been moving too much which has caused the skin to grow weird (I wasn’t there for the appointment so I’m really not too sure about what I’m talking about). They sprayed some stuff on it to get it to fall off and instructed us how to clean it and use tape to keep the tubing from moving the button. 

Louie’s pretty accurate when he relays information to me from doctors.  Sure, sometimes he forgets to tell me things, but what he does tell me, is usually correct. Even if I’m there, we tend to have different perceptions of what the doctor says, and he’s usually correct.  It doesn’t bother me like it once did; he’s just better at science then I am!

Anyway, the point of that was that he was showing the nurse how to do some of those things, and she would talk over him.  He’s get a little irritated but would get back to the point.  Then she said, well I don’t know how much longer I’m going to be here with the school schedule.  Ummmm…. okay.

Needless to say, that upset us a bit.  First of all, we mentioned this to her and she didn’t make it seem like a big deal.  Second of all, we wouldn’t be spending all this time training her if we knew we had to do it all over again.  The agencies had offered a temp nurse until we got a permanent one and I said no, because training in itself takes a lot of time.

She was off and on the phone that day with the agency, even after Louie told her it wasn’t her job to get us another nurse and that we’d take care of it.  Later, after she’s off, she calls me and tells me that she really is in love with LJ and our family and that the agency called her to tell her that we actually wanted more hours then she thought.  I told her I’d talk to Louie about it and I’d see her tomorrow.  Louie just said he would talk to her about the hours we needed.

This morning, I realize it’s pretty quiet and notice it’s 10 after 7 and our nurse isn’t here.  Ok… I give her some more time then I call her.  She tells me that she took herself off our case on Wed and finished out the week (she left early on Friday) and didn’t they send someone else?  I told her that I was upset because no one told me AGAIN what was going on.  She said do you need someone? And I start to talk, although I’m not sure what I was saying but she just starts talking over me again.  Finally I said, don’t you worry about it and hung up.

The thing is, I feel bad about this!  I mean, obviously she wasn’t a great fit with our family, but I liked her and I hate that our relationship ended like that.  At the same time, I’m furious that no one told me what the heck was going on!  Don’t they think it’s important to inform the families?  We were even going to use the same agency, but Louie was just like, forget it.  We’ll use one our therapist’s recommend.

We have 2 weeks left with our Early Intervention therapists and one week with our Rehab. Institute (R.I.) therapists.  Luckily, the therapists at the R.I. are putting together some stretching guidelines and therapies to work on.  I really wanted our nurse to have a good understanding of LJ and his disabilities so they could better understand him.  School starts in 3 weeks, which seems to be our deadline now.

Obviously, there was a huge communication issue, regardless of how many times I tried to clarify it with her.  Did I miss something?  What do you guys think?

G-tube and help

Ok, mamas, you were right.  After a week of being at home with the new g-tube, I admit one of my thoughts was, “I wish we’d gotten this sooner.”

On Thursday, we had a follow-up appointment with GI, just to make sure feedings were going well.  They are.  We aren’t even up to our target goal (8 ounces, 5 times day) and LJ had gained 2 pounds since Friday.  2 POUNDS!!! Granted, it’s the 2 pounds we lost this past month, but still.  2! POUNDS!  It’s a huge deal for us.

I can already see a difference.  His ribs aren’t protruding as much.  His delicious cheeks are even rounder, fatter.  He seems to have more energy.

The best part is, we don’t have to fight at meal time anymore.  I downplayed eating time with him a lot.  It was stressful trying to make sure he ate enough.  There were battles when he was too tired.  At one point, I was practically force feeding him.  Many times, we would all end up in tears at the end of the meal. 

But there were times he did really well, too.  Like the past few months.  And this made me really question our decision.  But after 5 illnesses this year, his eating and drinking habits suffering a little more after each one, and after the last illness where he lost 2 pounds, we knew what we had to do.

And it was the right decision for us.

We don’t have to worry about changing his schedule because of all the therapies we have, daily.  We just hook him up to his backpack and go.  We still feed him by mouth when we can… which brings me to an exciting part…

We’ve qualified for an in home nurse!

I’m nervous about bringing someone in my home, into my family (we have lots of hours) but I’m excited to have help.  I’m excited that someone will be able to do with LJ all the things I don’t have time for because of Noah or trying to work.  I’m excited he’ll have more individual play time.  I’m excited to have another person I can talk to about our life that will get it after a few days with us. 

We decided to meet the nurses before just signing up with one.  I’m glad we did because the first one was kind of bomb.  Then again, we’ve had such great therapists and have sought out great doctors, that our expectations may be kind of high.  I know that anyone will fall in love with LJ, but we want someone who’s passionate about him and their job.  Someone that will be a part of our family.  Someone that will relieve stress and not add to it.

G-tube

It happened a lot faster than I expected.  Last week, we went to our very first G.I, after a small battle.  See, our surgeon already gave us the approval for surgery, but he wanted us to be sure of our decision, so there’d be no regrets.  Well, the day before, the Nurse Practitioner calls Louie and tried to finagle out of the appointment (ok, so it wasn’t on purpose but it ticked me off).  Long story short, she cancelled our appointment, without telling us.  It was pure chance that I caught it the evening before.  Then they tried to move the appointment to a different time, but I wasn’t having any of it.  At the end of our conversation, she told me frankly, “You know you’re seeing NP, not a doctor.” Yes, I knew this.

It was obviously an important appointment, since the doctor did indeed end up in the appointment with us.  We discussed the PH Study (surprisingly, normal…), his feeding habits, his recent gagging issues, his other conditions that would affect decisions regarding surgery.

In the end, we all agreed to do the G-Tube (feeding tube through the tummy).  It was scheduled the following Wednesday.  As in 2 days ago.  It was quite a scramble to get everything together. 

The surgery went well.  The first day was the hardest.  Typically, surgery sends you home the next day, but G.I. was concerned with re-feeding syndrome, which basically would lead to heart problems.  Surgery wanted to send us home the next day, even before the surgery, regardless of the note.  I made sure that didn’t happen, which got us switched to the G.I. team the next day.  They’ve been a lot more cooperative. 

I was nervous, scared, and excited.  I doubted myself even though I knew it was what we needed.  To take the pressure off, to have enjoyable meals, not worrying about calories.  But surgery is scary.

While we waited for him, I couldn’t help but feel this was only the beginning.  We’ve already been told by orthopedics that we need to do some tendon surgery for his hips but we postponed, wanting to give Botox a chance.  But mostly, we felt he was awfully young for such a procedure and would mark the beginning of many surgeries to come.

It’s a little unnerving to think how accustomed to hospital stays I am. 

Tomorrow, LJ will probably be discharged.  Tomorrow is also the 3 year anniversary of the first time we got take LJ home from the hospital, 2 weeks after he was born.  From the same hospital.  Just thinking about it fills me with mixed emotions.

A prayer was whispered everytime the chopper took off for the child they went to transport

 

PH study

Last Saturday, LJ and I went in for his PH Study, which basically tests reflux levels.  We were sent there so we’d have the results when we go to our GI appointment this month and discuss if we’re going to be doing a fundoplication (fundo).  Fundos are a bit more invasive than say a g-tube (feeding tube through the tummy).   The week prior, we had an upper GI done to make sure all of his insides are in the right place.  Don’t you love my medical terminology?

The doctor told us that when they did the upper GI, they noticed he aspirated a bit.  Funny they didn’t mention that at the time.  I mentioned it could be a coincidence, since LJ doesn’t normally drink lying down, but then again, I have noticed he’s been gagging quite a bit lately.  That’s a little disheartening since he’s never really seemed to have an issue.  She told me that she’d have someone call me to set up a swallow study, but I’ve yet to receive a phone call.  I knew I should have got their number.

They started out by placing a tube in his nose and then sending him to have an X-ray to make sure they placed it correctly.  They didn’t, but it was easily fixed.  LJ, needless to say, was quite unhappy about the procedure.

We had scheduled feedings at every 3 hours (from the beginning of the meal) during the day.  For the most part, we would lay him down afterwards.  Throughout the night, we were allowed to extend those feedings to every 4 hours.  Let me just tell you that 4 am feedings are not really practical. 

The best part about the whole experience was ordering food for him.  It really sucks when we go out, we’re limited to things like mashed potatoes.  At the hospital, they had a menu of things we could order, pureed.  At home, I’m so concerned with his calorie intake and nutrition that I don’t puree his foods separately.  He gets a mosh posh of meat and veggies and some kind of soup to make it taste better.

I discovered he loooooves chocolate chip cookies and chicken nuggets.  And he loves real bananas as much as the jar kind.  BBQ beef was a little strong for him, but he didn’t mind green beans with sour cream.  He didn’t eat as much as he normally does, although he doesn’t normally eat every 3 hours.  He had also been off his reflux medication since Wednesday and off his Mirilax since Friday (which is a daily thing for us).  He did really well, considering, with minimal complaints.  Except at 4 am.  But mommy was cranky too.

I am a little upset that the past two days he’s been spitting up quite a bit when he’s done so well this last month.   I mean, couldn’t he have at least done that while he was being tested?  I cannot figure out why his body would be doing this.

We’ll know the results when we have our GI appointment.  I’m interested to see just how bad his reflux really is.