Day 771 - Longest Day Ever‼️ 😲🚗 🛣️ 🏥
Thursday, February 9th, 2023
🤕 Again, James had 25 sensors attached to his head, face, and chest. They monitored his brain waves, oxygen levels, heart rate and breathing as well as eye and leg movements while he slept off the ventilator. We have no idea what these results will show. On one hand, Mom had to suction him throughout the night from 10pm until 5am, which we normally don't have to do. (Mom did not sleep, but James was able to sleep through everything.) On the other hand, he did not need any oxygen last night. 🤷🏻♀️ This is the longest he has been off the ventilator and just on an HME; a whole day and a half! Both our pulmonologist and our ENT let us know that they don't rely on the sleep studies to provide very accurate information. These two doctors have always been up on the latest research and studies have found that sometimes the results will come back saying there's a sleep obstruction, which ironically sometimes is just the trach itself. 😂 We won't have the results to the sleep study for several weeks. Our follow-up with our doctors isn't until late March (even though we are hoping to get those moved up). 😬
🏡 We got home from the sleep study at St. Joe's Women's around 6am. Shortly after we received a call from the nurse letting us know that we left our sound machine there 🤦🏻♀️, so Mom scheduled a time on Friday to pick it up. Mom took James upstairs to the bedroom (where it was dark) to see if they could get in about an hour of sleep before PT. James had physical therapy at 11am and Mom still needed to give James a bath to get all of the goo from the probes out of his hair as well as get James back on the ventilator to administer his nebulizer treatment. Mom brought him downstairs with his suction machine but was unable to carry the to-go bag which contained the emergency bag. She figured that since we never need it she could just go back up and get it later. It's always when you think you don't need it...
😲 During therapy James was doing great standing up at the new kitchen chair but then all of a sudden he fell down to his side and his entire GJ button came out on the floor. Mom lifted his shirt and saw just his stoma. 😫 This is a feeling that we have had too often recently. The panic feeling knowing that you will be headed to the ER, again! Our therapist was a huge help letting mom know she would watch James and to do whatever was needed. Mom ran stairs to get the emergency bag that contained our backup G-tube. There was blood coming out of his stoma, fresh red blood that we have never seen before. Mom stuck the G-tube right in the pool of blood and got the G-tube in just fine. James immediately sat up and then wanted to play on the chair again standing. The therapist was amazed at how James wasn't even phased by the accident. At this time James was getting fed water into his J so Mom just continued running water into his G at 45ml/hr. Mom looked around not understanding why this button came out, because it didn't feel like it was pulled. She took a syringe full of air and pushed it through the button which made the sound of a deflating balloon. There was a hole! It is crazy that this button only lasted one month! 😟
The therapist continued PT with James while Mom tried to figure out which hospital we were going to go to. Dad was on back to back calls so Mom needed to wait until he got a window. When he stepped out of the office Mom was already at his door waiting to go in and said "We have to go to the ER, the GJ popped". The look on his face said it all. "Really?!" (Like I can't believe we are already doing this again!) Mom thought that going to St Joe's in Tampa might be a better option since it was almost noon and Wolfson's IR in Jacksonville closes at 4pm. It is about a 4 hour drive to Jacksonville. So not only would we need to get scheduled for a same day appointment we would need to specifically be scheduled right when they close. Mom tried calling Wolfson's Direct IR line a few times but no one picked up. This phone number is literally just for GJ replacements! Since no one picked up Mom ended up calling James' pediatrician to let them know that we would be heading to St. Joe's ER and that they should call the ER to give them a heads up (we were told to do this). The woman that she spoke with was a receptionist who did not quite understand why mom was calling. We had a feeling she wasn't going to call the ER. While mom was on the phone, Dad also tried calling Wolfson's and got through immediately. Different area code! They said they could schedule us for 3:30pm today. Dad said "Challenge accepted!". That means we would need to get in the car right now and drive super fast because there is always traffic. Our therapist ended up leaving because her time was up. Mom made the executive decision to pack up supplies as fast as possible to stay the weekend in Jax. Mom has a very detailed, color-coded, sorted spreadsheet of what needs to be packed for a trip in regards to medical supplies. She thought she could pack for a few days without looking at the spreadsheet by now since we have traveled so much. 🤣
It turns out we actually made it 30 minutes early and arrived at Wolfson's at 3pm. If we had not made it in time we would have had to take James to the ER and get admitted to the PICU, just like we did on his birthday this year on New Year's Eve. Since we did make it in time James did not have to get an IV. Mom and Dad were both able to gown up and go in to the surgery room. This time was a little different than previously since the entire button came out and it was not taped down. The surgeon needed to use fluoroscopy to feed the camera down to his intestine. James did excellent as Mom and a doctor held his hands up and out of the way. Dad was ready with the suction, just in case. We don't think he even cried this time.
We were actually in and out of Wolfson's from registration to the parking lot in 22 minutes, which is absolutely amazing! They are so efficient and it makes so much sense to have GJ replacements set up like this instead of clogging up the ER or PICU. Plus they have a Starbucks! ☕ While we were at Starbucks getting Mom caffeine James recognized that they were playing Alabama Shakes and started wiggling. This one lady couldn't stop watching him dance. 😆 Just to give you an example, even if we were to drive straight back to Tampa instead of staying overnight in Jax we could be home by 7:30pm. If we stayed in Tampa we would just be getting admitted into the PICU. He would also need an IV and not get scheduled with radiology for a day or so. So nuts! Is it worth the drive? Absolutely!
Did we mention that James' adorable 2008 Notre Dame shirt is unlucky? Even single time James wears it something happens... tubes come undone, medports leak, things explode. Mom thought that maybe it was just a coincidence, but after the bath this morning mom put the shirt on. And the shirt wanted to prove a point. 😳
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| Leaving the sleep study at 5:15am |
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| Waiting in the lobby at Wolfson's for one whole minute. |
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| Super excited! |
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| Starbucks! |
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| On our way to Juju's |
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