Wednesday, February 15, 2012

Day 10

Jax's weight is pretty steady and went up .1kg (please don't ask me to translate to oz, I'm suddenly Euro with my measurements!).  He entered the program weighing 11.0 kg and is at 10.8 today, so that's a 2% weight loss, and is all pretty much expected.

Today was rough on Jax with gagging and puking. Jax is learning how to calm his gag reflex, and today was a challenge. He puked at breakfast but held it in for lunch and dinner just barely. It's so hard to watch him get so nauseous and sick when a gag is triggered. Jason and I are learning how to turn off the puke when it's about to happen, which isn't totally full-proof, but definitely helps. This isn't behavioral puke, it really is Jax getting sick from food that is either too thick, or a gritty texture, or an air bubble because he doesn't know how to make himself burp yet.

Jax was good in a behavioral sense today and did what was asked of him for each meal. He still cries going into the chair if I'm not in the room, but is calmed easily within moments.

The floor resident came in our room this afternoon and told us that Jax would get a can of formula in his fluid-feed overnight tonight. (!!) Woah, that threw me off. When I asked the doctor why, she didn't really know (she's not part of the GI feeding program). She said she assumed for weight reasons.

We asked the psychologist who we did dinner with and he was rather upset to hear this so he made some calls. The order for formula was pulled away and we're meeting with the doctors and dietitian tomorrow to discuss it all. The sense is to NOT give Jax any formula feeds unless his weight dips to 5% below his original weigh-in. Since Jax is here being monitored medically, we want to take every opportunity to see what he can do orally. The feeding psychologist (there are 4 that we see here) said that may impact his intake and we'd lose all the efforts in the past 10 days.
So, we'll have the meeting tomorrow and discuss the plans for home/discharge including trouble shooting plans in case of illness and all that good stuff.

Otherwise today was pretty standard. Jax decided he didn't want to do art at his class today, and played with the toys there instead. There was a "Caribbean" party after lunch (yes, I bribed him with it) where he did some GREAT art for Daddy.

I had quite the "perspective" run in this morning while making my breakfast in the parent lounge on our floor. Jax was on a chair watching a cartoon while I tooled around the kitchen area. Another mom was in there washing out baby bottles. We chuckled together how much work that is and she said something about her son. I asked how old he was and she paused. She acted a little embarrassed and said he was 18 months old, but quickly followed up with the fact that he had GI issues. I waved my hand in the air and told her there was no need to explain. I pointed to Jax and said he never finished a bottle as a baby, and actually ate his first meal last week, so need to be embarrassed from one GI-mom to another.

She looked relieved, and then asked why Jax had a feeding tube. I told her a quick rundown of prematurity and low blood flow and the puking and lung issues and suddenly I said the word "motility study" and her face went totally blank. I stopped talking and she said her son just had that study done last month. I asked if he had Pseudo Obstruction and her mouth hung open saying she's never met anyone who even knew it existed. Her son is on TPN (the IV feeds) and a colostomy bag. He has a fever so he's inpatient trying to find the source and hoping it's not his central line.

I told her there's hope, and she broke down SOBBING. I ran and got tissue and hugged this woman. A complete stranger and I stood in the lounge while she cried on my shoulder. She is so scared and so overwhelmed and looked down right exhausted. She described to me what we went through with the non-stop nights of screaming and puking. She said she quit her job to care for him and she wakes up every morning scared to look in his crib to find that he choked or was just not alive somehow. Wow, it really brought me back.

She sat down by Jax and she sort of pet the hair on his head, and Jax promptly said, HI, and she smiled. Then she cried again. Ohh, this poor woman. It was time for us to get to Jax's morning therapy and I told her I'd leave my email and blog address for her. I still don't know her name, but oh my gosh... I just want to put her in my pocket and comfort her!

Jax opening up treats sent to us by some awesome friends!

He thought they were so cool that he actually did lick a little frosting! (I think he looks like his brother here!)

Here's Jax with a few volunteers coloring some wooden lizards. He's pretending to roar at the guy next to him.

I just thought this photo of the boys was cute since it looks like Jax is eating a big chicken dinner. (He did lick some sauce and mayo all by himself).


Valerie said...

Oh that story brought tears to my eyes. So glad you were able to comfort her. I love the pics! So, so cute. :)

Jamie said...

Wow, that is wonderful you were able to give some hope to her!! I love the pics, too and those cupcakes look amazing! xoxo

Wiley said...

Such amazing progress! And so glad she was able to make a connection with you.

And go Jax on the licking of cupcakes and mayo and awesomeness!!!

(And go momma for sticking to your guns and getting to the bottom of the tube feed).

Jenn said...

Usually I can tell them apart but in the last photo they look SOOO similar to me! :)