Day 224 - GI Procedure Part 1

Wednesday, August 11th, 2021

😷💉💰Covid Test Nonsense

So yesterday in the evening they mentioned that James is going to need to get another covid test prep for the procedure. Dad let them know that he did not need another one because he just had one 2 weeks ago. After some back and forth the GI doctor said he didn't realize that he had just had a test 2 weeks ago and was okay with him not having another one. Well it seems as though that conversation never happened because this morning mom was bombarded by nurses, nurse practitioners, doctors (mainly the endoscopy team) demanding that James gets his covid test. Mom explained what she thought went down yesterday with the doctor being okay with it, but now they are saying that the hospital policy is that before a procedure a patient needs to have a covid test within the last 5 days. It is a little ridiculous that James has been quarantined to his room and was just tested 2 weeks ago and Mom was just tested 2 weeks ago. With all negative results. Yet they insist on giving a baby a lobotomy. Mom understands a lot of these people are just following policies and protocols. But the fact is there are incentives for hospitals to make money from covid, which should make you question if the policies set in place are for the betterment and safety of the patients or for financial gain. Period. So James ended up getting his covid test and screamed bloody murder. 😢

8:00am 💉 The IV team did not show up yet. The procedure is scheduled for 10:00am. We ended up giving him morphine 💊 through his G-tube because mom wanted him to be relaxed for his IV. As you know James is a hard stick and no one ever believes Mom when she tells them he is really strong and we typically need three people to hold him down.

👩🏿‍⚕️👩🏼‍⚕️Although our nurse today is a really good nurse, we are having a charge nurse take over James' care this morning while he is being prepped for his procedure. This way our RN can focus on her other patient while James has a lot going on. 

🩺 Weaning and WAT Scores

During rounds they decided to wean his clonidine today. They're weaning his sedation meds (methadone and clonidine) everyday. Mom thinks it's kind of ridiculous since he's having a procedure done today, but she doesn't really have a say since they are basing it off of his WAT scores only. The doctor made a comment about how "James has been tolerating his weans well". Mom just responded saying that "James does vomit a lot though". (To get specific... James has been vomiting every day, he yawns and sneezes insane amounts, sometimes it takes more than 30 minutes to console him. His WAT scores are much higher then what is being charted, but typically Mom is the only one in the room.) The Doctor just says, "Well we know the vomiting is something else". Really? How do we know? We don't. We are just guessing. James has methadone due at 9am, but she overheard the doctor say she did not want to give it. James has been NPO since 2:30am but we have still been giving him his meds and flushing with water, since it's very little quantity. Up until now at least.

8:30am 💉 IV team is finally here. To make a long story short there were two pokes even though they were using an ultrasound machine. They couldn't hold him down and the first catheter came out like Mom warned them it would. It is beyond frustrating. The morphine didn't do anything. James was inconsolable screaming and crying. It really is ridiculous that they can't give him gas or Versed or something more when he gets an IV. 

10:00am 👨🏻‍🍼 Dad came to the hospital to switch with Mom so she could go home and get some sleep since she has been pulling all nighters. He has been really helping out Mom a lot recently with being able to give her a few hours here and there.

10:20am They kicked Dad out of the room. He went down to the cafeteria before heading to the waiting room, because in this hospital the cafeteria is massive. A huge difference from the cafeteria in the NICU. It just takes a little while to get there. 🧭 You can definitely get lost if you don't know where you're going. In November, there was $126 million expansion to the hospital. The PICU is in building E give you an idea. 💸🏨🏥

10:55am 🥼 The procedure was a success! The doctor was able to go endoscopically through the mouth, cut the bolster, and extract it using a net retrieval device or a "basket". Then he measured the stoma tract length as well as the length to the Jejunum. The new measurements are 14FR 1.2cm tract length with a 22cm length for the Jejunostomy. They looked to see if they had that GJ available in that size so they didn't have to order it and they did have it available! Unfortunately interventional Radiology was not available to do the procedure right then, so this was scheduled for tomorrow morning. Until then they put in a regular MIC-KEY balloon button 14 FR 1.2 cm. This is an increase in his track length from a 1.0 cm. The doctor said that the 1.0 was rubbing against his stomach wall which could be really bad for his lining. Over time the thickening of the stomach lining will increase as he gets older.

Interventional Radiology scheduled for tomorrow morning at 7:30am. He will be NPO starting at midnight. We signed a consent for sedation meds. James received propofol through his IV given by the PICU Doctor. 

After the procedure James was pretty sleepy. Then he woke up fussy. Dad vented him and then changed him. While changing him and wiping a little smear on his butt, he exploded a giant 💩 all over. Luckily Dad was prepped with the diaper underneath, the wipe over his penis, and double wipe in his hand to block the basket. He just kept going! It was all over. 

In the evening, James was pretty agitated so we gave him a PRN tylenol. Then in the early morning he ended up giving him a PRN morphine due to a higher WAT score.

On a side note James has been on the LTV since Saturday night! He has officially fully transitioned.

Temporary MIC-KEY balloon button.

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. ❤️