Day 223 - Advocating for James & Procedures Scheduled!
Tuesday, August 10th, 2021
Last night we had a nurse that took it upon herself to come up with an improved breastmilk prep process to help everyone get on the same page. In the PICU, they do not have a "milk room" which is a team of team solely responsible for providing breastmilk to the RNs when needed. The PICU nurses need to count, thaw, measure, and prep all of the breastmilk. Sometimes this can be time consuming. There is a fine line between prepping in advanced and wasting milk. There are strict guidelines from the CDC regarding breastmilk. Once frozen breastmilk is thawed it has to be used within 24 hours, even if it's in a refrigerator. The key word is "thawed".
In the middle of the night we changed the end tidal CO2 and it drenched James' onesie. So Mom put him in just a top. At 8am, James projectile vomited a lot of his feed all over himself. Time for wipe down bath, trach care, and 2nd outfit change!
They decided to wean methadone again today. They are really going strong with the weans. Everyday they are weaning either methadone or clonidine.
Today is the day of training. Both our Day and Night nurse were training someone.
Mom called the company that makes James' balloon-less G-tube button talk to customer service and her concerns regarding how the GI doctor would like to remove the button. They ended up giving me the number to the nurse practitioner for Florida for the company Mom left her a message. Within 10 minutes she called back and said that it is perfectly safe to do what he wants to do with bringing the button up through the mouth. She also said to save her number if we have any future questions and that the doctor can also call her. It was amazing to get that resolved so quickly.
The nurse practitioner for GI came by to talk with Mom and then the doctor also came in afterwards to clarify what is going to be done tomorrow. He will just be taking out the button bedside through his mouth, measuring the track length, and length down to the J. They then need to order the button. They will do the GJ procedure once the button comes in. Until then they will just put in a regular Mickey balloon.
OT worked with James and had him lay on his side on forearm, posing. We rotated him facing backwards on the bed so that way he can start turning his head more to the left. The Doctor came in during OT, and Mom updated her on GI. Then ENT came in and said that she doesn't think we will do a second granuloma cauterization.
Our pulmonologist came by he said he would talk to the doctors in their Tuesday 3pm meeting. Mom asked if we could go home on the 12 PEEP and he said he would be okay with it. So that is hopeful! If we can get everyone all on the same page about going home on a PEEP of 12 we could be closer to a discharge date. IF we still need to wean ventilator settings then we could be here a while.
James was super fussy in the afternoon. Mom did all the things but he was still upset. So she just leaned on the bed and held him close and he immediately fell asleep.
James is scheduled for his procedure tomorrow morning at 10am. The plan is to get an IV put in early in the morning for his sedation.
At bedside, remove his current button. Measure the track length of the stoma and the length of the GJ tube into the jejunostomy. We'll be temporary putting in a regular MIC-KEY balloon.
Procedure #2 Thursday Morning
Interventional Radiology puts in a GJ, down in Radiology.
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. ❤️
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