Monday, January 28, 2013

Ugh.

Sorry for the dreadful and ambiguous post title. I'm feeling defeated today and coming up with a positively cheery title isn't in me. During the last week, I've had conversations with several people who were concerned about Jax's weight. His pediatrician asked if he was going to be seeing the feeding team at Childrens Hospital soon, and I said it was in a week. She was happy to hear that otherwise she was sending us in early (and she hadn't done that since Jax first came home from the NICU). Then I got a call from Jax's teacher on Wednesday voicing her concern, then the chiropractor and Mr Nick brought it up on Friday during his appointments, so my anxiety was really building up for today's appointment (and probably explains my need to post a random disclaimer on my blog a few days ago).
Jax had his full Feeding Team/GI specialist appointment today. His last full team appointment was in July and he usually just checks in with the dietician, feeding psych and therapist every few months. Of course the GI specialist was bummed to see Jax still struggling with food and more importantly, his weight. I think he was expecting (as I was last July) to be discussing tube-removal.

The appointment started like they all do with a weigh-in and measurement. When Jax stepped on the scale, I got pretty upset. He weighed in at 24.4lbs.

ugh.

I put my face in my hands and had a million thoughts run through my head when suddenly Jax put his hands over mine, I looked up and he was about to cry asking why I was sad. I knew right there that I had to pull it together and buck up. I told him I was not sad and everything was completely fine. He knew that by standing on the scale, I was upset and I do NOT want him thinking that he is doing anything wrong. We loaded him up with stickers and walked his skinny little legs to his room.

The dietitian, feeding psych, feeding therapist and GI nurse came and sat with all their laptops. I knew they all saw his weight and no one said anything. The nurse started with all her typical questions and we discussed his latest behavior during meals and what kind of food and textures he's accepting and how private therapy is going. Then they asked about any recent illnesses and that may have affected his weight. And that's when the real conversation began.

When I saw some of these ladies 6 weeks ago for a follow up, I cried when talking about Jax's struggles to move forward with oral feeding, and they left me alone about the weight. But now with a weight loss to an already unhealthy weight, it was time for a talk. The dietician started, and I could tell she was treading very lightly, so I told her it was okay, and that I wasn't going to cry because Jax was sitting in front of us, so I needed to hear them say what they needed to say and figure this out.

She said Jax is currently at 80% of his ideal body weight. That puts him 1% away from moving from the mildly malnourished category to moderate. She said it definitely needs to be addressed immediately and it is officially the number 1 goal moving forward. Even though technically... this is all a gigantic step back.

I have to double his tube-feedings every night (I mean.... ouch... SO ouch) and continue with what he intakes during the day. I shouldn't focus on his biting and chewing, but he should continue his once-weekly sessions with Mr Nick (our private therapist).
The Feeding Psych gave some suggestions to some other smaller issues we've been having with feeding (like Jax not wanting to attempt to feed himself at all, pocketing food in his cheeks and lingering with a straw in his mouth and not drinking - all making a feeding session take way too long).
The feeding therapist did a session with him to gauge where he's at with smooth foods, drinking capabilities and then chewing. He had some peaches today! Well, she mashed them up, so it was kind of peach puree, and he really wasn't great with it, but it was officially in his mouth and some in his belly ;) He is definitely really struggling with any solid foods...

After all of that, we met with the GI specialist who was updated by all the gals. He thinks the doubled up formula through the tube will really help with catch up weight and that's the first and only goal right now. Malnutrition can lead to a lot of problems, and he feels that one more bad illness can really put him under with weight. He thinks Jax's asthma plays a big part in weight loss during illness because he breathes so fast and works hard. I told him that Jax's asthma has been really controlled this year, so I'm just so confused why this kid is struggling so bad with weight. The doc agreed that the diet I have Jax on is already very high calorie and fat, but he thinks Jax's need for calories is higher than Brady (he used him as an example since he's a logical comparison) and will just always need 'more' for energy and growth.

The doc said that once we get Jax's weight under control, and he feels confident it will, then we'll refocus on why Jax is struggling so bad with oral eating. He said we may have to do another inpatient program to get back on track. I asked if it could really help his biting/chewing and the doc said it can 'help' but it's impossible to learn how to bite and chew in that short of time. But Jax learning to comfortably intake all calories by mouth and thrive without his tube would be a goal.

I felt like that was our goal one year ago. And while I'm not disappointed in Jax that we're still here, I can't help not feeling a little bit like a parental failure. I think that's probably the most human emotion I can express in words about the whole thing.
My kid is malnourished. To the point where medical intervention will take place if it's not turned around... in TWO WEEKS. We have two weeks to get out of the red zone. No pressure.
They want to weigh Jax and see how he is then and then 3 weeks after that, he has to see the entire team again, including the GI specialist. Wow, Jax hasn't been this closely monitored since he was 'Failure to Thrive' as an infant, which I guess is essentially the same thing.
At least we have a team helping us who I can call at any time, so I do feel good about that. I just wish this child didn't always have a struggle.


I took Jax to Trader Joes on our way home from the hospital and I let him participate in picking out food. I figure it can only help with his relationship to food. He loved it. Those greek yogurts in his cart have 320cals and 18g fat in 8oz - wowza! It's like winning the loto to find healthy food with these kinds of calories and fat. Love it!

Then he helped check out the food. They sure are sweet at this store!

You can imagine how helpful he was...

3 comments:

Merks said...

Many thoughts and prayers being sent your way. I know he'll turn around with the weight gain! Stay strong, mama!

Karol said...

It's been awhile since I checked in to your blog. This is not the news I was hoping to hear. I am so sorry that eating is still suck a struggle for sweet Jax. I'm praying that the double feeds get his weight up out of the danger zone.

Much love to you, sweets.

Michele said...

Oh boy. I'm so sorry it wasn't good news. I won't tell you not to worry because, well, he's your son and that's your job! I can only offer a bit of perspective that I've developed raising my own 2 special needs kids, which is that things never improve in 1-year increments, at least not that we can tell at the human scale. You have to compare now to 2 years ago - that's where you look to see improvement.

Four years old is such a difficult age in many ways - there is still so much they don't understand (WHY does everyone want me to eat?) and so much that they want to be in control of (NO, I WON'T swallow this, because you want me to but it's MY decision!). Five years was a big turning point for both my girls, maybe it will be for your little guys too. You've all sure had your share of struggles, I think you're past due for a break! Here's to no more illnesses this winter, and hearty weight gain for Jax. :)

PS I know it may not be your cup of tea, but I sometimes find inspiration in autobiographies of people who had hard times as children, yet thrived despite it. Angela's Ashes and its sequel are the first that come to mind, and I'm sure there are others.