Day 222 - X-ray, 2nd Hearing Test, and Bloodwork

Monday, August 9th, 2021

😫 James needed to be suctioned every hour last night from 12am to 8am. Mom also vented him and changed diapers as needed. He had a few spit ups throughout the night where his face and neck would be wet. 😥

8:00am 🤮 Projectile vomited even though Mom was venting his G-tube nonstop with a syringe. 🤷🏻‍♀️

8:45am He was supposed to have labs done by the IV team but they needed to tend to an emergency. James was also supposed to be scheduled for an x-ray but supposedly GI never put the order in (?). We waited all day for those things to happen. It's pretty hard to schedule a trach care or feeds when we don't know when a procedure will happen.

9:30am 🏋️‍♂️ Physical Therapy worked with James and did a new position where they rolled up two chucks to make a really thick bolster and sat him on top as if he is riding a horse. This way James gets pressure to the bottom of his feet and strengthens his core. Our homework for this week is to make sure that James is getting pressure on his feet, arms, and hands, so that he can start lifting himself up.

11am Dad relieved Mom since she pulled an all-nighter again. She drove home to sleep and got a good 2 hours in before heading back to the hospital.

11:30am 🎶 Music Therapy - She showed Dad the chords on the guitar for the James Weston lullaby. She's going to work on it herself! Exciting!

1:30pm 👂🏻 Hearing came by again for a second test. This one was much better but we are still going to do a follow-up on Thursday. 

RESULTS: Neither ear is filled with wax. No fluid in either ear. Echos came back good. All positive signs. Nerve response is present in both ears. Due to him moving, wants to come back and double check his left ear. 

3:00pm  James finally got his X-ray and went down to Radiology. They allowed Dad to go down with James. He only had 30 ml of his 12pm bolus feed since he needed to have an empty stomach for the x-ray.

RESULTS: James is negative for pyloris stenosis. This just means that we need to move forward with the GJ. 

Honestly, having pyloris stenosis would have been something we could have fixed whereas getting a GJ is more of a long-term solution, not permanent but a lot to handle. We will discuss the pros and cons in a future post.

4:30pm Mom talked to the GI Doctor about how he would like to do the GJ. First, we need to remove his current button. Second, we need to measure the track length of the stoma and the length of the GJ tube into the jejunostomy. Third, we need to order that specific GJ button. But for now we'll be temporary putting in a regular MIC-KEY balloon. Fourth, have Interventional Radiology put in the new GJ. Mom was very concerned with how he wants to remove James's Mini ONE balloon-less button. 

Background: James has a special AMT Mini ONE balloon-less button. Not a lot of people are familiar with this. In fact, mom had to request this button be put in since James popped five MIC-KEY balloons in 6 weeks (due to BPD we suspect).

The GI doctor said he did not feel comfortable removing this button the way it's intended due to the fact that you have to use a needle-like removal tool. The needle goes into the button and stretches the bolster. He is afraid of puncturing James's stomach since it is so small. Thiswas originally put in by a GI surgeon at the end of June. However this procedure of removal will be done bedside. He said he wants to go through his mouth, snip the ball (bolster), catch it in a basket, and bring it out through the mouth while the rest of the G-tube button would fall off on the outside. This sounded a little crazy to Mom. Also she asked a bunch of hospital staff they've ever heard of this procedure and no one said they were familiar. This just seemed way more invasive than removing the button in like the video below.

5:30pm 💉 Finally the PICU IV team came to draw his blood for his labs. Even with the ultrasound machine they had a hard time finding a vein, but they did get it on their first try. Since they drew an extra vile of blood Mom asked them to test for Factor V Leiden.

Sleeping with his arms up in the air!

He got blood drawn by the PICC team using ultrasound machine for his labs.

James loves putting his fingers in his mouth!

P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤