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.
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.
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).