Acid Reflux

Oh My Goodness! 

I'm so glad that these appointments are over. 

We started out with an ultrasound on his kidneys and adrenal gland. We learned that the hemorrhage has gotten smaller meaning that it's resolving itself.  YAY!  His kidneys still look a little enlarged, but the Urologist isn't too concerned about it yet.  We'll just keep watching them.

After that we headed over to ENT.  Carter has been doing well with his breathing, but occasionally he gets a little whistle in his throat and whenever that happens it seems like his breathing gets a little heavy too.  I thought for sure that he had Laryngomalacia, and Carter's Pediatrician did too.  The ENT did a Laryngoscopy which is where he took a long wire which is about as thin as spaghetti and pushed it through Carter's nose and into his throat.  It has a tiny camera on the end that showed us what is going on in Carter's throat.  It turns out that the whole area was VERY red and inflamed proving once and for all that Carter definitely has acid reflux.  We added another reflux med (Zantac) and are going to try getting him off of the continuous feeds at night.  The ENT pointed out that if your stomach is being continuously fed, it will continuously produce acid.  Hopefully this works.  Honestly, Carter has been doing well, but after seeing how red and inflamed his throat was, he must really be miserable.  I hope we can help this with medication and no surgery is needed.

I am a little bit mad at myself over this whole thing.  Way back when Carter was in the NICU, he had another Laryngoscopy done which showed similar results.  Things are a little fuzzy for me, but I remember that at some point they took him off of one of the medications and after another test the NICU docs decided that he actually didn't have it. I fought to keep Carter on the Prevacid, but I should have fought to keep him on the Zantac too.  I remember Carter's nurses telling me that he needed to be on both, but I gave up the fight at one medication.  At least now we have proof, and can move on.

Doctor's Appointments Yuck!

Tomorrow is the big day.  We're taking Carter to see what the status is on his Adrenal Hemorrhage. We have an appointment to have the ultrasound done in the afternoon followed by an appointment with his Urologist and ENT.  The ENT obviously has nothing to do with the Hemorrhage, but they had an opening so we decided to try and kill two birds with one stone.

Have I mentioned lately that I really hate doctor's appointments?  I mean, I know that they are what is best for Carter, but I still hate them. Among many things, I hate the nervousness that I feel before we go to them. Our little experience with the plastic surgeon last week is exactly what I'm talking about. Not knowing if we're going to find out something new about Carter's condition gets to me every time. It scares me to think that he'll have to have additional surgeries.  I'm not naive... I know that new things are going to come up, but it's the feeling of waiting for the other shoe to drop.

These next two weeks are full of appointments that I'm especially nervous for. Tomorrow, I'm nervous for the ultrasound because I REALLY want the hemorrhage to have cleared up on it's own.  Nervous for the Urology appointment because I'm hoping that his Kidneys look better from the last ultrasound.  Nervous for the ENT appointment because I plan to talk to him more about Carter's airway. I'm ready to move on from here.  Wish us luck! I'll update tomorrow when we get home.

BAHA ~ Bone Anchored Hearing Aid

I met with the new ENT yesterday, and was very impressed by his plan for Carter.  He thinks that it would be a good idea to get Carter started on a BAHA implantation during his next surgery.  The doc thinks that even if Carter has perfect hearing in the left side, it would be an advantage to him to have this placed as well.  So far, Carter would be the perfect candidate for this procedure, but we won't know for sure until after the big hearing test next week.  Here is a link to the information about the surgery: Bone Anchored Hearing Aid .  If you scroll to the bottom, there are pictures to give you an idea of what it looks like.  There is one little negative to this which would be that Carter will have to wear a very soft headband to hold it in place until he turns 5 years old. It's not as bad as it sounds, and I wish that I could find a picture online, but I can't seem to find one.

I also talked with Carter's Pulmonologist today.  He's been doing much better since the steroids, but still struggles at times.  I explained to her what he was doing, and she's decided to put him on an inhaled steroid.  It's a type that they typically give to Asthma patients and will be administered through a puffer with a spacer.  Hopefully this will help him.

Not much more going on.  Carter's been giving his Daddy smiles all night which Michael is just loving.  He's also increased his feedings from 80 ccs to 140 ccs (which is a little over 4 ounces). Holy cow!  He's really starting to pack on the pounds now!

Nothing New

There really hasn't been anything new going on.  Carter's still working on trying to get his hands to move where he wants them.  He has an appointment with the ENT tomorrow.  It's a basic appointment just to check the tube they placed in his ear during the surgery.  I'll try to update afterward.

Thank you for your continued prayers and support.  We know that they are helping!