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Tube is placed.

Tuesday, January 24, 2012

 {EDIT: Mary Mac, no the ER doesn't know us by name yet but all of our other doctors and nurses sure do. At this point, I think it's only a matter of time before the we have permanent name badges at the ER. :)}

Well, a middle of the night ER visit is no excuse for sleeping in.  The kids jumped out of bed right on time and my alarm went off early so I could call our doctors.  I had two goals today: take Oliver to the doctor for his residual cold and take Bennett to the doctor for his missing g-tube.


Fortunately, we were able to take care of Oliver first.  We held him back from school today due to cold-like symptoms that weren't improving.  It turns out he tested positive for RSV, an upper respiratory virus.  So, he won't be able to return to school for another few days.


Then, on we went get Bennett taken care of.  This is a picture of the foley that the ER doctor placed in him last night.  The foley is a long soft thin plastic tube that was placed in the spot where the g-tube fell out.  Because the feeding tube stoma spot so quickly fuses itself together, time is of the essence.  So, the ER doctor put in a foley to prevent the spot from healing up.  The foley was taped to his belly to prevent it from coming out.

Previous to our ER visit, I was under the impression that the Children's Hospital ER had the ability to replace feeding tubes when they came out (this is why we traveled 30 minutes to go to that ER).  However, the ER doctor at the Children's Hospital told me that they neither had the access to g-tubes nor could they put them back in at the ER.  Instead, he said, they could give Bennett only a placeholder until we could see the Pediatric Surgeon during clinic hours. 


Last night, the ER Doctor placed the foley catheter in the hole where Bennett's g-tube was and told us we would have to come back tomorrow to get the g-tube replaced when the Pediatric Surgeon was in the office.

I was surprised.  I thought, "aren't there Pedi Surgeons on call?  Isn't this a 24/7 hospital and ER??  Is there not a Pedi Surgeon Med Student on rotation who could help?"  But instead of asking questions, I just assumed it was what it was.  I took his response as protocol since it was in the middle of the night and I hated to have to wake someone up anyway.

But I wish I would have pushed harder.

Late this morning, we met our Pediatric Surgeon at the Pediatric Surgery clinic.  It was good to see her face.  I knew she was going to be able to help.  She is such a very very nice woman - so competent and caring.  But the first thing out of her mouth was, "I can't believe the ER doctor last night didn't call us!!  I have already sent off an email instructing all ER doctors to call Pediatric Surgery when a g-tube issues arise.  They had the ability to help you last night and they didn't.  I am so sorry you had to drive back and forth twice for this!"

I was bummed to hear this.  It would have been so nice to have not had to come back down to Temple for another appointment only hours after I was there.  But I appreciated so much now knowing this information.

This is how these things work when you have a chronically ill child.  As much as I feel like I know a hospital/medical process or system, I find that there is so much I don't know.  When it comes to medical care for my child, it's all about learning through trial and error.  It has been only through trial and error that I've learned which doctors are most helpful, which hospitals are best, ways to save on medical bills, which medical products work and how to get the help I need most efficiently.

It's a bummer that someone didn't do their job last night by not calling the Pediatric Surgeon on call.  Sure, the ER doctor didn't have access to the g-tubes and couldn't put a g-tube in...but he could have called to find someone who could.

Nonetheless, I have learned that, ultimately, it's my job as mom to push the doctors to get what Bennett needs.  And now that I know this information, next time this happens, we will get it taken care of at the ER.  I am just satisfied to know our doctor is going to make sure this kind of thing doesn't happen to other patients in the future.

The top of Bennett's g-tube.

The bottom of Bennett's g-tube, where the water is placed to make a bubble to keep it inside.
Nonetheless, putting in a g-tube in the office meant no pain medication, which was hard.  If we had been in the ER, they could have given him something to make him loopy and relaxed (one more reason I was hopeful the ER could help us).  However, they don't have the ability to monitor his heart rate in the clinic so we had to go without pain medication.  I gave him Tylenol beforehand, which worked well (something I learned through trial and error during our last experience with the g-tube falling out).

This shows the g-tube size: 14 French (the size of the top of the tube) and 1.5cm long (the length of the bottom part of the tube).  Our last one was 14 French, 1.0cm long.  Bennett kept that same size since he was an infant, so it doesn't surprise me that it was time to go up in sizes.
Before the g-tube was placed back in, the doctor and I talked about why it may have fallen out to begin with, especially after we just placed it in a few months ago.  She and I discussed changing the type of g-tube completely but the decision was eventually made to simply put in a longer g-tube.

The doctor theorized that the reason the g-tube fell out in the first place is because he out grew it.  The doctor believes that the current g-tube had not been sitting as far down in his stomach cavity as it should have been.  Instead, it was likely just resting in an insecure place where it was only a matter of time before it came out.

So, she very quickly put in a new longer g-tube, which she believes is going to be much better for him.  It looks the same but sits up only slightly higher than his last one did.  The hope is it is much more secure in the stoma and will not be able to be pulled out again anytime soon.


So, I am hopeful this issue is now resolved.  Between ER visits due to g-tubes and rectal prolapse, I'm about done.  My confidence is we have now resolved both issues, which is good because I'm tired of going to the ER (the novelty wore off really quick).

The reality is, though, ER visits for rectal prolapse and g-tubes are stressful and inconvenient.  But it's not the ER visit we really fear.  I am more and more aware of what we face in the future with Bennett: ER visits due to lung issues.  This can be more life threatening and, ultimately, that's what I dread most.

We are monitoring Bennett for RSV.  I didn't even think about having him tested this morning but we think he likely has it too.  RSV is very contagious and there isn't much you can do for it.  Breathing treatments tend to help so we can increase our treatments from twice daily to 3 or 4 per day.  But the reality is, viruses just have to take their course and work themselves out.  I am praying that there are no complications with this for Bennett and for there to be no lung damage because of it.

In the meantime, I'm so proud of my other little guy, Oliver, for getting some medical attention today.  It's about time he gets to be the center of attention at the doctor.  He was so brave today getting his weight, temperature and blood pressure checked. I joked with the Pediatrician that I'm so focused on Bennett's health, I'm afraid I'm going to completely miss something significant with Oliver's health.  But she reassured me I would not. :)

I think both boys will be fine.  G-tube is in.  RSV will be watched.  Oliver should return to school soon.  Bennett is back to normal.

The highlight of my day today was having our beloved babysitter Margaret take the kids for a few hours later this afternoon so I could take a nap (three hours of sleep last night didn't cut it).  It was really wonderful.

And to cap it off, Oliver (with a little help from Margaret) brought home some flowers from the grocery story for me.  It was very sweet and a great cap to a day that that didn't start out quite so rosy but ended well.

4 Responses to “Tube is placed.”

  1. Hi, don't you have a new button at home for reserve? We have a new button laying around just in case this one she has will fall out or stop working for a reason. I do replace her buttons myself every 4 or so month without painmeds at all, she does not at all complain other than from the pressure from me pushing and screwing it in place.
    We also have this thin tube like thing to use in case the button will fall out at night and the hole is starting to close up before detected,It's called: "AMT balloon stoma measuring device". you can also use a straw or a pencil or what ever you have in hand to keep the hole from closing up (Just have to be clean) and use that till the button is ready to be put back in place.

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  2. Thank you for sharing your story through your blog. I came across it while researching the g-tube and CF and was glad to find real photos of what a g-tube is as it's all new to me. I have a 2 year old daughter Olivia, born just 1 day after Bennett, on 10/1/09 with CF who has always struggled with her weight. We were informed about the likely possibility of a g-tube in her future at our last CF clinic visit and I've been trying to rest my nerves by finding other CFers stories regarding their journey with CF and the g-tube.

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  3. Hi there. I've been following your story for a while (ever since my daughter got her CF diagnosis last April), and I have to say that I really admire how you stay so calm during all of these events that happen to Bennett! I also love how you share your experiences here - I have taken many mental notes of things to keep in the back of my mind for clinic/hospital visits, and other things that may crop up.

    I hope this g-tube stays in place for Bennett, and I'll say a little prayer that Oliver's RSV symptoms clear up quickly and that he doesn't pass them on to Bennett.

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  4. Brian,
    This is Brian Blank's mom. Hi, haven't seen you since the wedding. Ran across this blog on their blog again and am touched by what God is diong in your life with yourself and you family. I would like to encourage you that I am believing that this is the year that God is going to raise up His endtime army who will come out in His full power and authority healing millions of people and performing other great works of mercy. We shall certainly ask that both little Bennett and your 85 year old grandmother both be healed this year. I know that God is keeping my 89 year old mother alive for this event also. . . and your child shall raise up and bless the Lord and share his testimony with many. . .all three generations shall be involved in this. Receive the blessing when it comes! Jane M. Blank (Pointblank777@gmail.com).

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