Day 219 - Poppin Collars

Friday, August 6th, 2021

James had OT and a bunch of stop-ins with their clinical notes below from the hospital portal.

No issues overnight. Tolerated LTV x8hr x2 yesterday and overnight. Remains on same respiratory medications. No changed to methadone and clonidine. WAT scores reported as 0. Fluid balance +289mL. 1BM. Tolerated feeding regimen. No changed to calories/protein as of yet. 

Update Notes from Nutrition, GI, and ENT

Nutrition Designation : Pt meets severe PCM criteria for length z-score. However, per pt's length history, pt has always been in this range. Stunting vs h/o rickets and bone fractures

Nutrition Recommendation :

1. Recommend change to previous feeding regimen of EBM 20 kcal/oz with 2 daytime feeds of Neosure 22 kcal/oz. This will provide additional protein 0.3 g/kg for growth and provide additional calcium and phos due to continued rickets

--Neosure 22 kcal/oz, 120 mL over 45 min at 12pm and 4 pm, and then continuous feeds of EBM 20 kcal/oz at 35 mL/hr from 6pm-9am (15 hrs)

--Provides: 765 mL feeds, 107 mL/kg, 75 kcal/kg, 1.4 g pro/kg, 43 mg/kg calcium, 25 mg/kg phos

2. Pt continues with rickets, recommend doubling amount of calcium and phos to provide additional calcium and phos for bone accretion. Recommend Calcium carbonate 4 mL/d and Na Phos 2.2 mL/d (with 2 feeds/d of Neosure with EBM 20 kcal/oz will provide: 99 mg/kg calcium and 54 mg/kg phos with Ca:P ratio of 1.8:1)

3. If want to continue on current feeding regimen, recommend adding 1 TBSP complete AA mix/d to add additional protein

--provides additional 4 kcal/kg, 1.1 g/kg protein

4. Continue to monitor daily wts or as able. Pt has been meeting growth goals and not exceeding at this time.

GI

1. to continue present regimen and monitor closely for rapd weight gain

2. refluxing still present regurgitation cough and vent settings on ees and acid reducer no emesis but clinical gerd seen by nursing staff alternatives addig reglan, changing gtube to a gjtube and bypassing the stomach , or anti reflux surgery.. continue gerd precautions.

ENT

8/6: Stomal granuloma slightly smaller today; I think responding well to the silver nitrate. We will reassess next week; may benefit from second treatment. 

He is all smiles now!

This is Mommy rigging how to stabilize the G-tube. Mepilex with a Grip Lok

Lightweight teether

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. ❤️