The Gastroenterologist.

On Tues we saw Logan’s gastroenterologist.  I was NOT excited about this appointment for two reasons.  One being I felt very blown off by him in the last couple weeks and the second reason was that his main area is NUTRITION.   Thank goodness I got Logan to gain that pound when I did because ever since his last respiratory illness he has completely refused ALL food.  I keep trying about 3-4 times a day to feed him hoping he will just snap out of these aversions….nope.

Not a chance. 

He lifts his hands to his mouth, squeezes his lips closed, and whines.  He wants nothing to do with eating. 

Ahhhhhhhh………………..

If only he knew what the alternative was…..

So we started off by clearing the air, and I told him that he was a very hard man to get ahold of.  I explained what happened and he kind of shook his head  “from now on you call me, don’t talk with Fellows or a nurse you call me.”  We worked out a plan for future  situations and moved on to the next big elephant in the room.  Logan’s weight. 

L

Logan is way below the 1% mark for weight.  If you can picture this I would say he is about

-50% on the weight chart.  (Thank god, I packed that pound on him when I did.)  After going over various options he said he wanted to speak with Dr. Patel.  So while he spoke with Dr. Patel I met with his preferred dietician.  She did all the calculations that they do, ideal body weight, calorie consumption, daily needed calories, ect… Turns out for Logan to just get on to the weight chart at around 1-2% he needs to weigh over 2 more pounds.  I told this nutritionist all of the things we have tried and failed at…. increased calorie formulas, thickeners, rice cereal, ect… I explained how there was a one two-week period where he ate and I fed him very rich food and he gained a pound.  She had one more idea that we hadn’t tried yet….

Supposedly this ridiculously expensive can of overpriced cornstarch, is supposed to add undetectable calories to formula.  It is not supposed to change the flavor or texture but it is supposed to ass 14-28 per bottle feeding.   Then the doc came back into the room with this….

It is ALL TO familiar to us heart Mom’s but to those of you that have the privilege of not knowing this an NG tube.  A nose to stomach feeding tube.  He said that he really wanted Logan to just have one now but the hospital policy has changed and now it is very complicated to give a child an NG tube.  The nurse has to do, and then a chest x-ray must be done, home health care must be set up…. So instead he said that he would give the nutritionist 2 weeks to work her magic on Logan but at the end of that two weeks if Logan had not gained 4 oz per each week his recommendation was going to be a feeding tube.  He said that he wanted to start with an NG to make sure that his stomach and GI abnormalities could handle the increase in amount and if it does then he wants to put a G-tube (a surgically placed tube in the tummy).  He said that at Logan’s age and NG tube was not a good long-term solution anymore. 

We also discussed Logan’s rectal prolapse and his rectal bleeding.  He said the prolapse is just a nuisance but nothing serious and that the bleeding was not concerning unless it was dark-colored, had clots in it, or was happening very often.  I showed him the big tear and he just grimaced.  Poor Logie….

So we are now on a frenzy to get him to gain weight.  I do have to say that  I am getting a second opinion from another GI specialist this coming Tues.  This was a doc that was recommended by the pediatrician so I thought I would give him a try too.  I am sure that he will have similar recommendations but if I like him he would be more convenient to get to.  Going to the Cleveland Clinic is a hassle.  Parking is so expensive, traffic is horrible, and the hospital is just Mammoth, its like its own city. 

The thought of putting Logan thru another surgery right now is just gut wrenching.  I am really hoping that he puts some weight on.  I don’t understand why he won’t eat??? Its so simple…. Please baby just eat….

Today we are off to see Dr. Patel (the cardiologist).

9 thoughts on “The Gastroenterologist.”

  1. Sending you hugs. I’ve never commented here before, but I so understand. I beg my daughter to eat everyday. She is three now, so I have been doing it for years. I don’t understand it at all. Who doesn’t want to eat? Yet, my daughter’s favorite play activity is her kitchen and to cook, and she loves the idea of food, asks for all kinds all of the time, but she won’t eat. We’ve tried everything to get her to gain weight and she has always just done enough to prevent the tube, but it is still a struggle. I hope the nutritionist helps Logan gain weight, but if he needs the tube, it will help him. I haven’t been following very long, so I don’t know, but has Logan gone to OT for feeding therapy? I totally understand him not opening his mouth when he is sick. My daughter refuses anything when she doesn’t feel well, but feeding therapy helped us move past those instances quicker. Good luck!

  2. I’m sorry…we had a dr appt yesterday for my heart baby. He’s off the charts too in weight, and its beyond frustrating. Same thing, just squeezes his mouth tight and starts fussing. I hope it gets better with the duocal.

  3. You know I am right there with you on the feeding issues. It is so hard because it is something I enjoy a little too much.

    BTW: The clinic is its own city…even has its own zip code!

    See you all soon.

  4. I haven’t posted on here before but I have followed Logan’s story from the begining via FB/1in100 posts and coming to the blog. My daughter also has a CHD and was 9 weeks premature weighing only 3 lbs at birth. She has never been on the charts, once she came close for head circumference but the next visit back down below the line. So far we have not had anyone express the need for a NG or G-tube, mostly because she does follow the growth curve she’s just riding her own curve. She’s now almost 2 and still hasn’t been able to break the 18 lb. mark. She does on our scale at home but not a the doctor’s office.
    So getting to you feeding issue – it seems every time Laura has been intubated/extubated for a surgery/procedure she is very slow to getting back to eating and last year actually stop drinking completely – no bottles, no sippies, nothing. We had to add milk to everything just to keep her hydrated. I know it’s a stuggle but the only thing I found that worked was to keep pushing the food at her and eventually she got back into the habit of eating and eventually even drinking. We have a friend that has great success with the Duocal, so I’m praying it works for Logan too.

    1. I admire your stamina. The only thing that is making me think he needs the tube is that he can barely hold his head up at 10.5 months. He is so behind and the cardiologist doesn’t want him to not develop properly. Its so frustrating. And when they don’t eat I feel like I have failed.

  5. Kristen, I am not an expert on getting kids to eat. Mine ate everything, have you tried giving Logan popsicles, once you get them past his mouth, he might like them. cherry might be a good start. Once you got him to eating these, maybe the next steps would come.
    I think of you guys so much, and pray for Logan.

    Jan

  6. I want to know if your son had the surgery and if he did how long was the recovery my son ha almost the same heart conditions and also the stomach and malrotation of the intestines my baby is only 2 weeks 6 days old hes never seen a day outside chu!

    1. We decided against doing the surgery. I have seen too many kids get into big trouble from abdominal surgery. We decided to not do it prophylactically. We decided that we arent going to fix something that isnt broken. We also live 20-30 mn from 3 pediatric hospitals and if he develops symptoms we know to take him in emergently.

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