Hope

Hope

Saturday, February 11, 2012

Day 6

Jax gained back his lost weight and is still at his admittance weight, so that's great. His blood sugar was back up to 128, but the doctor said he wasn't even supposed to get his blood sugar taken anymore, and he thinks the spikes are from the Pedialyte going past 5am, and this morning it did go until 5:30am because the nurse didn't fill the bag up enough in the middle of the night. I was woken up to the alarm going off at 4:15am and had to call the nurse in to start a new bag up. I hated the pump last night.  The alarm went off at 11pm, 11:30pm and 1:15 am before the final one. It was just wonky and kept saying the line was obstructed. Good thing Jax pretty much slept through it.

Today was still a step forward, although I admit, today I had the most anxiety of the stay so far. I haven't slept a full night all week, so that has added to my cold blowing up a bit, so I'm sure that all contributed to it.
This morning I had the feed all by myself with coaching in my ear-mic. We did great together, but Jax had a tummy-problem, and vomited all over himself. It was a good learning experience for both of us, because I just cleaned up the part that was in our way, calmed him down and continued with the feeding. Jax learned that the session did not end with him vomiting. I give the kid credit, because the vomit wasn't behavioral. The doctor and I agreed that he looked like he had an air bubble because he really fought it, but grabbed his tummy and couldn't keep it in.

The lunch meal had Jason sitting next to me at the table doing some praising, but really just getting Jax comfortable with dad in the room and some other distractions. I think we did pretty good. And I have to add... Jax had to take 5 tastes of puree'd HOTDOG. The fact he didn't puke on that shocked me because I had to hold back my own facial expression when smelling it!

The dinner meal had me start the meal, and dad finish the meal. It went pretty good, but I had to leave the room because Jax wouldn't finish his milk for Jason and started having a meltdown. The doctor coached Jason through and praised Jax during the drinking and promised to have me come back. It worked pretty good. Brady was QUITE the handful, and Jax did QUITE well considering Brady was running around and had a toy. Good practice for at home I guess! But it was great to see that Jax did well with Jason. We knew Jax would be clingy with me, but Jason is learning how to get Jax past it.

We have noticed that Jax is coughing and gagging  little more today, so we're dreading the thought that a cold is on the horizon to put a stick in our plans. We'll see, but Jay and I definitely got our faces splattered with a variety of puree's today.

We've decided to add a bedtime snack and realizing Jax goes to sleep just 2 hours after the dinner meal, we're going to move his meal times to 8, 12, 4, so we can do a 6:30 snack, which makes more sense. The nurse had our snack and let us into the feeding room. We were on our own!

Jason and Brady sat in the observation room and Jax took 5 bites of ice cream (something we knew would go over well for the first "snack" try) and 1 oz of chocolate milk, so I consider that a success for the first time. It was about adding another time of eating skills and not about a volume goal tonight.

Jax's fluid-need tonight is the same as last night. I can't imagine Jax is going to take much more volume-wise in a single sitting since he takes between 4-6 oz of milk (strawberry or chocolate made with heavy cream) plus food in a 20 minute time. The doctors said that it's very age appropriate. We need to work on varying Jax's tastes for food and for Jax to take the remainder of his fluid need during the day with water. So far he doesn't want ANY water between meals except when he gets his teeth brushed. I also think we'll do 4 smaller meals at home, rather than 3 bigger meals, and I think that would help with a little more fluid intake.

Jax actually said YES for the first time tonight when asked if he wanted to go eat - uh, YAY! The progress and surpassed goals are just amazing. I know I'm a bit stressed out right now, but I'm also amazed at this little boy. The doctors are all shocked as Hell, if I may say! They've been seeing him since he was a baby, and set the goal to what they truly thought was where he could get to - he passed that on day 3 :)

Jason had a long talk with the doctor at breakfast while I was feeding Jax, and of course there's chatter of Jax only needing his tube at night for supplemented fluid like what we're doing in the hospital, but the menus and continued therapy-like meals will still prove to be hard work on our end. The good news... that means Jax has moved into the world of oral eating, we'll take it! We're pricing out food processors and scales this week with anticipation.
Jax will learn like a baby learns how to move up with food textures. Slow and steady. Our goal of him consuming his dietary and caloric needs by mouth seems to be a major possibility!

Jason is sleeping at the hospital tonight, and I ran home with Brady. I need one full night of sleep badly. I got home to get Brady in bed, run a load of laundry, update here and now I'm hitting the HAY. We need to be back on the road by 7:45am.

** Of course I left the new camera cord connected to the lap top in the hospital room, so I'll try to download the photos tomorrow and throw them on here. The day really consisted of the boys playing, fighting, us taking long walks and my friend Valerie visiting with a gift from some MoMMY friends :) love them :)
Ok, off to run the humidifier and slam some decongestant.

4 comments:

Tiff Blakey said...

I'm so happy for you guys. Jax is just showing, once again, what a rock star he is.

Heather said...

This post made me cry because I am so happy for you guys and Jax. I love this program you're in and that it is available.

D. said...

Ah-mazing, Annie! I cannot believe the strides he has made and know it's only going to continue.

Michele said...

I have to say, he IS doing incredibly well for ANY 3-yo - lol! I swear mine learned to get by on nuclear fission from molecules strained from the air. Sometimes it amazes me that they grow at all given how little they eat any given day and how random their taste preferences are. Pureed hot dog? Neither of mine would have touched it. Seriously - air molecules. The eating habits of 3-yo's are bizarre under the best of circumstances, so I say he is doing VERY well indeed!