Madness, I tell you... Madness.

Yesterday was a day I would not like to repeat.  I could just scream... oh wait, I already did plenty of that.

It started off with the chaos of picture day at dance with Lulu.  Let's just say, trying to get 6 little 3-4 year olds to be super adorable on demand... in itchy costumes they had never even tried on until that day because the shipment barely arrived on time... was filled with bribes of popsicles and who know's what else I threw out there.

After pictures, I was able to sneak in a shower before heading to Zoe's appointment with the Pediatric Gastroenterologist.  Can I just say... I love Emanuel, I really do.  But the commute is getting old!  I don't think I've spent more time in Portland EVER... and I have lived almost my entire life.  I'm pretty sure Portland has more to offer than a hospital.  Maybe someday we'll find out.

After Zoe's appointment, I was really upset.  Every unpleasant emotion in the book.  Since I knew Dr. King had talked personally with Dr. Riley (GI doctor), I thought everyone was on the same page. Basically, our need for seeing him is because Zoe's oral feeding is not improving, her weight is not increasing at the rate we would like and she is struggling to keep her feeds down.  As many HLHS babies struggle with feeding, it is not uncommon for a gastrostomy gube to be placed due to the long term complications with nutrition.  Blah blah blah... we're all on the same page, right?  WRONG.  When I first started talking with Dr. Riley, he asked what we were there for and the problems we were facing.  I told him everything and that Dr. King had been prepping us for a G-tube since we were discharged from the hospital.  The entire time I was talking, he repeatedly made it very obvious that placing a G-tube was not his intention at all.  I was so confused because I thought that was why I was there and why Dr. King referred us to him in the first place.  Dr. Riley explained that the problem is keeping food down and that a gastrostomy tube would have the same result as her current nasal gastric tube.  While I realize this, it is the long term issue that I am more concerned about.  Zoe pulls her NG tube out from her nose at least once a week... the poor thing has not been without something in her nose and on her face since the day she was born.  A part of me wonders if she is so opposed to her NG tube feedings because she hates the stinkin' tube in her nose!  I would protest if I were her.

As for "other options," Dr. Riley's recommendation was to start her on a continuous feeding schedule.  Continuous feeding would be done using an enteral pump which she would be hooked up to for 10 hours at a time from 9am-7pm and then 9pm-7am.  Her current diet is 70 mils every 3 hours, which works out to be 560 mils in 24 hours.  With the continuous feeding, she would get 280 mils with each 10 hour feed.  That works out to be 28 mils every hour.  The continuous feeding is just about the only recommendation that Dr. Riley made that I really felt good about.  I think that Zoe struggles with the large amount of volume being dumped in her tiny belly every 3 hours and she might be more comfortable with a slow and steady continuous feed.  We will see how that goes as a nurse will deliver the enteral pump tomorrow and teach me how to use it.  We will know very quickly how she feels about it.  The only downfall is that she will be hooked up to a pump 20 hours a day!  My hope is that if this works, she will plump up... and gain more strength and energy to work on her oral feeding skills.

The next recommendation was a nasojejunal tube.  The NJ tube is fed through the nose and down to the small bowel.  The procedure is done by a radiologist, using a fluroscope and contrast.  The difference between the NJ tube is that it bypasses the stomach completely, taking the food from her nose to her small bowel... whereas the NG tube takes the food from her nose to her stomach.  His hope is that this would allow food to go down and stay down.  The idea sounds fabulous but not ideal for a long term situation.  If she pulls this tube out, she would need to have a procedure scheduled every time.  I wouldn't be able to just put it down myself as I have been doing.  Since I trust Dr. King and his referral to see Dr. Riley, I agreed to go along with his plan even though I was hesitant.  We scheduled the NJ tube placement for Monday.

After I got home, I was beside myself and after some convincing from my mom... I called our case manager, Paula.  I gave her a not-so-brief rundown of the appointment and she was shocked.  She said Dr. King would definitely want to know about all of this before placing the nasojejunal tube on Monday.  She was also concerned that Dr. Riley decided that Zoe wouldn't need anesthesia for the procedure, which concerns me too!  I highly doubt that feeding a tube through your nose, all the way down to your bowel is a walk in the park... especially for a 2 month old baby.  Paula was confused as to Dr. Riley's understanding of how long term this issue is going to be.  She said that she wouldn't be surprised if Dr. King referred me to a completely different doctor within the pediatric gastroenterology group to get us that gastrostomy tube.

I hate to ruffle feathers between doctors, but I really and truly feel that something just isn't right about this whole situation.  All I want is for my baby to be able to eat, gain weight and have the Glenn surgery.

Dr. King is out until Sunday, so he will hear about this from our case managers and we will know more on Monday.  As for now, we will be trying the continuous pump feeding over the weekend.  The NJ tube placement has been cancelled until we get the okay from Dr. King.

Breathe.  One day at a time.... breathe.


LCM said...

If there is one thing I learned taking care of Maddy is that sometimes you have to be the squeaky wheel, even if it's not in your nature. Don't apologize, this is your baby and you know her better than anyone. It's alright to ask for a 2nd opinion from a different doctor (even one not in that specialty) if its what you need. Good luck and trust your gut!

The Leiths said...

Oh kacie I'm so sorry you're dealing with all that. I'm dealing with insurance stuff right now and that alone is driving me crazy, I can't imagine what you're going through. Hope something works though and your little girl starts gaining weight!

Johansons said...

we had the NJ tube for Tadd after surgery because the drs didn't want him to aspirate. it really isn't that big of a thing to get them placed it is more that it exposes them to more radiation. at PCMC they would prefer not to have NJ tubes. if i where you I would nix the NJ especially if she gets the tube out that often. I also think that it contributed to his NEC he got because the continual flow to his intestines didn't give them any rest. Tadd had a hard time keeping his feeds down so they put him on night continual feeds and decreased his amount per day bolus. he has done lots better and is gaining like he should. if I where you I would ask about the continual night feeds in my case i think it worked the best then you don't have to have a tube on your baby all the time and you wont have to get up so much in the night.
PS I am Jessica's sister Chelsey and my son Tadd has HLHS too.