The Hunger Games of Tube Weaning Update #4

UPDATE #4:

Yikes...10 months later.  Maybe I should have just waited a year.  A lot changes when your child just eats, whereas before it was such a process to feed her.  Without the tubes, syringes, blending, freezer bags full of food, recipes, coolers wherever we went, the vomit, the button, the back up button.  A lot changes, as in you don't have to worry about ANY of that ANY longer.  It's life changing.

Until March 2020 Lydia was still getting medication through her tube until I decided to try out Zyrtec chewables.  She likes them.  Winning.  I am still playing around with iron tablets because, eww, but she's doing better with them.  We can honestly say we haven't used her tube for anything since maybe March.  It's still there because I am a rule follower and the Dr. has to tell me we passed the test before removing it. 

No food, no water, no meds for an sustained period of time, balanced diet, weight gain = passing the test...I just need to know how long sustained period of time is. 

I'll let you know after our GI appointment on the 21st of August.  Oh and I'm obsessed with taking pictures of her while she's eating....I just now realized that.  

UPDATE #3:

On October 1st we stopped blending any food for Lydia and stopped feeding her through the tube entirely.  She still takes morning and nighttime liquids through her tube with her medications.  We've stopped her vitamin d and part of her iron via the tube because she eats a chewable vitamin every night.  We've also switched a med from powder dissolved in water to a chewable tablet that she eats every night.  

Lydia continues to eat her morning and afternoon snacks and lunch at preschool.  She is eating breakfast earlier each day and sometimes before the ride to school.  She's still eating and asking for a lot of vegetables, she doesn't like fruit, and she drinks only water.  Lydia asks for Ritz crackers, shredded cheese and salami at every meal.  Last night she ate 4 oreos and I loved every minute of it as much as she did. 

Lydia's weight dropped a little more and then plateaued again after a little gain.  We're on the uphill climb again, just moving very slowly.  She is currently 27.5 pounds.  30 pounds by Christmas?  It is the holidays after all!

UPDATE #2:

On August 13th we had a check in with Dana, Lydia's dietitian.  Lydia is now eating all of her food orally except for 1 tube feeding a night after she is asleep.  She still takes liquids other than water and all medication through her gtube.

Lydia is now eating entire snacks and meals at preschool!  She's eating granola bars on the way to school and sometimes before bed.  She's found her sweet tooth and is particularly fond of mini marshmallows, mini m&ms and mini Oreos.  She eats broccoli, brussel sprouts, carrots and corn just as well as sweets.

Lydia has lost a total of 7% of her body weight and we hope it plateaus again and we don't hit 10%.

She is a rock star!

Original Post:

On July 1, 2019 we started a tube wean. Lydia is still 100% dependent on her g-tube for feedings and medicine. A tube wean means withholding 1, 2, 3 or all 4 of her tube feedings and letting her eat orally. The first week we withheld a snack, the second week a snack and lunch, and now breakfast, snack and lunch. We are only tube feeding her dinner after she's eaten dinner orally.

Lydia's oral consumption of food has gone from less than 1/8 of a teaspoon a day to at least one meal's worth of food every single day. She's learning what it means to be hungry and that eating food makes the hunger go away. She's exploring more food than ever before and is not picky.

Over the course of three weeks Lydia did lose 5% of her body weight and we will need to stop the Hunger Games if she goes beyond 10%. When she does hit 10% we will hold steady and see if she can maintain that weight for about a week before adding tube feedings back. Then she'll have to gain by eating orally and take her meds orally. She also has to go several months with absolutely zero things through the g-tube before it can be removed. She's by no means there but she has taken great strides in just three weeks.

We are so proud of her and continue to be amazed! Everything revolves around food right now so here's a bunch pictures of Lydia eating!

Warning, it's long. Annual Medical Update

Height: 37 inches - shorty and she's not keeping up with her curve
Weight: 30 pounds or so - she's proportionate so that's something

Ear, Nose, Throat: Dr. Arganbright was on maternity leave, happy for her, sad for us.  She's our favorite.  Lydia's right ear tube was out of place and the left was gone...and that could be reversed.  Either way, there was very little vibration on the ear drums meaning there is fluid behind them.  They'll see us in a couple months and we'll probably have to get new tubes.  Lydia has had zero noticeable apnea since her Inferior Turbinate Reduction in October, so all is good there.  Good news about new tubes is that we can probably combo her CT Scan of her heart and not poke her multiple times.  Keep reading.

Endocrine: We saw Dr. Feldt via Teams and he is not happy with Lydia's overall growth.  He was very happy to hear she lost 5 pounds with tube weaning and gained 6 back in 8 months.  Her height is falling further off the chart and remains pretty linear right now.  Lydia's BMI is good.  We're hoping for a growth spurt, just a little Lydia, give us something.  Her labs looked good but they don't measure growth hormone well at all because it's kind of pulsed out into your system so they need to test over a 3 hour period.  Sigh.  We have a Growth Hormone Simulation test scheduled for Wednesday, September 2nd.  She is not going to be happy.  Line access, two medications, lots of blood draws, 4 hours.  

I'm not going to be happy if Dr. F ends up wanting to talk growth hormones.  He knows I'm going to fight him until he very clearly convinces me it's a must...kind of like that convincing it took to get the gtube, then the trach.  It took three people I had the ultimate respect for and trust in to convince me of that...I'm going to need her heart surgeon Dr. P, her retired ICU Dr. V, and the former ICU resident Sandeep.  Think Dr. Feldt will line them up for a conference call?  I'm only 65% joking.

Immunology:  We saw Brenda via teams instead of Dr. Raje and we like that!  She was happy with the tube wean, the shortness of Lydia's colds over the winter and her T cells rose again!  Yay!  She said her labs are in the normal range for kid her age with 22q11.  She still has lymphopenia which is essentially a low amount of white blood cells in your blood.  The ones she has are getting stronger, the T cell improvement, but it's still a bit tougher for her to fight infection since she has fewer.  

Gastroenterology: Dr. Cocjin wasn't there.  Sad.  Make that two years running.  We have a GI appointment with Dr. Abdelhadi on the 21st to consult about removing her gtube once and for all.  Yes, this is the Dr. that I literally walked out of the appointment with but that was like two years ago.  I've evolved.  She is between me and getting Lydia's gtube out.  I've got this.   

Speech:  The 22q11 speech therapist, Brenda, was happy with Lydia's progress and thought she was doing well.  Still listening for hyponasality in her speech but not hearing a whole lot.  That can be related to her palate, adenoids, etc.  If it continues and doesn't improve, there is a procedure but that's later on, if needed.

Cardiology:  Lydia has a congenital heart disease: IAA type B, VSD, s/p repair; h/o hypo-plastic LVOT s/p Konno; Lydia is doing well from a cardiac standpoint.  She had an EKG and echo-cardiogram.  All was pretty good, normal size, lower repairs look good, no significant obstruction, very mild accelerated flow across the aortic valve, trivial aortic valve insufficiency. Lydia has strong upper and lower peripheral pulses.  No restrictions.  Due to Lydia's trach and multiple surgeries she has a lot of scar tissue in the way of good imaging of her original arch repair.  There is no reason to believe or suspect any issues but Dr. Shah says it's time for a really good look.  That will require a CT Scan and that requires contrast dye and that requires line access.  Dr. Shah is a dear sweet person and doesn't want to poke Lydia if she's already getting poked, so we are waiting to see what Dr. Arganbright says about tubes and then maybe we can combo.  Dr. Feldt didn't want to combo the Growth Hormone Test.  

There are still two things that worry me, well three actually.  They don't keep me up at night with worry but I know we are watching them.  Are we watching them until we need to intervene?  Maybe.  Maybe not.  I can't predict that and a doctor won't answer that any more clearly.  These words aren't perfect in heart speak but for now they are good, not bad for the short term.  "VSD patch bulges in the right ventricle.  No evidence of significant obstruction.  Trivial aortic valve insufficiency."  And the third worry, what is that CT Scan going to tell us?

Last year in my update I wrote, "Please, could this be the year of no surgeries for Lydia?"  It wasn't, she had one. 

Now I'm writing, "Please, could this be the year of no surgeries and no covid for Lydia?"  It probably won't be, pretty sure she's getting tubes again.  I'll tell you about covid later. 

Labs...labs make any day at the doctor the worst.  She was a trooper.  She screamed and cried.  I held her down like a wrestler or maybe more like those MMA fighters that pin people and hold them for a really long time...only this time there were two phlebotomists drawing blood.  Lydia also had a few chest/neck x-rays but that was a piece of cake and all was good.

COVID Summer July Part Two

The second half of July (and I'm sneaking in the first week of August) was apparently filled with playgrounds!  We ventured out as much as we could to enjoy new parks, new playgrounds and new adventures.  Daddy came along to swing and carry scooters and bicycles.  McDonald's breakfast Saturday morning picnics are becoming a little too routine.  July brought many fun times at school for Lydia but it also meant saying goodbye to her friend Gage, or as she refers to him, Gagey. They have been in class together for 2 years and have really been good friends.  It's more sad for me to have them say goodbye, I'm sure.