Sunday, September 5th, 2021
Today James brought the luck of the Irish ☘️ to Notre Dame football 🏈 with a 41-38 win against FSU.
Last night Mom dumped out the water from James' circuit about every 3 hours which is an improvement from every hour. Our heater is still set to two dots (medium?) and his secretions are still thick, so we don't want to go back to one dot (low?). I guess this is the heater setting we will have to live with. Literally. Mom also changed the CO2 end tidal because it wouldn't stop beeping throughout the night. It's one of those beeps you can only hear when you're in the room.
In our previous post, we discussed how there were changes to his feed rate. Three different doctors, Friday, Saturday, and Sunday.
- Friday - increased his feed by 1ML every 12 hours
- Saturday - decreased his feeds back to 25ml/hr
- Sunday - wanted to increase his feeds to 32ml but they decided on increasing by 1ml every 6 hours
This weekend one of the doctors mentioned that James probably needs to get a Nissen fundoplication due to the amount of gastric drainage he has been having. He stated that he didn't understand why this wasn't done originally when James got his G-tube. A Nissen fundoplication is a surgery to correct gastroesophageal reflux disease (GERD). The surgery tightens the junction between the esophagus and the stomach to prevent acid reflux.
So Mom reached out to the Moms of Trach Babies FB group to get advice from those who have had the surgery and those who decided against it. This is the post below sent at 2am in the morning. In just 24 hours, we received 34 responses from Mamas weighing out the pros and cons. It is seriously the most helpful and supportive groups on FB. Mind you this is a GTube question, not trach related (NTR) yet Mom would rather ask these Mom's than any other group. Trach Babies typically all have G-tubes and GJs. This group also helped James when he was having his G-tube balloon pop every week. There was a Mom who recommended the Non-Balloon option that got James through his BPD phase. Thank the Lord that was a short phase. We got really lucky! 7,500 Moms in this group that are 24/7 caregivers to medically complex babies yet take the time to help others (~50 new posts a day). ❤️
Overall, the majority of the responses suggested to not get the fundo surgery and that there were more cons than pros. (Although there were some that said it was necessary for their child.) Today's PICU doctor and GI doctor did NOT think that the Nissen fundoplication would be the right direction for James. So that was a stressful 48 hours for Mom, researching something that is not even going to happen.
James started using the Farrell bag again and it's working! (Well we are having a little drainage from the stoma and at first James was irritated but overall having success.) This is replacing venting his G-tube into a preemie diaper. The PICU Doctor today suggested it yet the GI doctor thought it was not a good idea. 🤷🏻♀️ So Mom wanted to move forward with it. Executive decisions need to be made. 👩🏻⚖️ This is great that it's working for James. The Farrell bag allows his gastric drainage to run up the tubing into a bag and when his belly is relaxed it will go back down back inside his stomach, allowing him to keep all of his contents. This way he does not lose electrolytes and get dehydrated. This it's a huge step and getting us closer to home because we can manage a Farrell bag. What we couldn't manage at home is him losing over 350 ML in a 24-hour period into a preemie diaper > then getting dehydrated and losing electrolytes > then needing blood work done every other day > then needing his meds changed every day at home. That was not going to work!
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| Sleeping with one eye open. |
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. ❤️
P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭
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