2am - Early Morning BPD episode. In the middle of Mom's pump, James had bradyed down to the 50s and desated into 40s. After that we did hands on and trach care. He lost some weight at 4215 grams (9lb 5oz). The night before he weighed 4220 grams.
3am - Looks like James is ready for some sleep.
9am - Hands on. James had a BPD spell and a massive diaper. The episode happened during the bowel movement, which is pretty consistent with BPD.
10:30am - Time in the swing
11am - Doctor updated us that James is doing well with his weight even though he lost last night. Overall for the week he is up. He also needed to get the rest of his 4 month vaccines. He only just had his 2 month vaccines at 3 months. Towards the end of the Doctor's examination while he was in the swing James had a really bad episode where he desated and bradyed into the 40s. 😥
2:30pm - BPD spell with brady and desat.
3:00pm - Checked blood (heel stick) for level of antibiotics pre IV dosage. Then ran IV with antibiotics over 30 minutes.
3:30pm - Checked blood (heel stick) again for level of antibiotics post IV dosage. They do this to see exactly how much is going into his blood and if they need to increase or decrease the amount of antibiotics needed to kill the bacteria.
3:45pm - Received his Dtap and HIB vaccines at the same time. Mom used a syringe to give James some drops of breast milk.
4:30pm - Trach care. Change trach ties and gauze.
5:00pm - Mom held for a little over an hour and then James had a pretty explosive diaper and BPD spell.
Starting at around 10pm James starting having back to back events, not really BPD episodes but acting irritated like he was trying to pass gas but couldn't. This carried on until 1am...
Then the night gets much much worse...
2:00 am - James screaming and crying at the top of his lungs. Mom hears the nurse teaching the intern about putting gauze under his g-tube. They had just finished dressing it. Mom gets up to check it out and notices that the G-tube was ripped out of his stomach with a partially inflated balloon hanging by a stitch. 🤬😡😠😢😥 WTF. The most disturbing part was that they had just done a dressing change, are standing there, and hadn't even noticed that is was outside of his body. They didn't know what they were looking at! If Mom hadn't gotten up and looked at the G-tube no one would have noticed.
We contact the on-call doctor, the nurse practitioner, the physician assistant, and the on call GI Doctor... We are waiting to hear if any of them would like to fix this or if they would like the nurse practitioner on call (who let us know she was not familiar with g-tubes) to figure it out herself. At this point the red rubber emergency catheter was put into his stoma to keep it from closing. (Yes, Mom knows what to do in an emergency situation now. Only positive of tonight was having this emergency situation happen while we are still in the hospital.)
We now have a room full of RNs.
Meanwhile Mom has one of her hands behind James' head and he is holding her finger on her other hand. (Did we mention that she hasn't slept yet and is on her second round of antibiotics from a UTI... and also has to pump and dump for a week because of the antibiotics 😢). So now James is sleeping because he is so exhausted from crying and screaming for several hours with a room full of people. The nurse trainer is holding the G-tube Mickey button with a piece of gauze outside of his stomach so that the stitch does not rip.
3:00 am - At this point we noticed that a purple liquid was still in his G-tube extension. 🤔 That was his Tylenol given to him at 1:00 am. It is now 3:00 am. Hmm 🤔 that's odd that Tylenol should have been pushed through by his feeding of breastmilk that he got at 1:00 am also. What's this?! Mom's breast milk is sitting in the hanging farrell bag (venting bag). The new intern never unclamped the tube so his feeding went back up into the farrell bag instead of going into his G-tube and stomach. How come no one noticed this?!
Finally the answer from the doctors. The answer was "let the nurse practitioner put it back in". 🤯 This literally took forever to get this answer.
First, she reinflate the balloon so we could see if there was an issue. There was. The balloon did not stay inflated, there was a hole. Therefore we needed a new G-tube Mickey button. We finally got one of those. She then snipped the stitch and took it off completely. She was able to easily put back in a new Mickey button and inflate the balloon to 2.5ml. But now we need to send James to Radiology so they can put in a contrast make sure it is in the right location!
4:00 am - The first we are not sure if James needs to go all the way over to the PICU across the street or if there is someone from Radiology downstairs. We hear back that there is someone able to help us downstairs in this building. This still means James needs to go in a transporter. This is always a scary ordeal being that James is completely dependent on oxygen. The transporter is a little tiny plastic box on wheels that whistles like a train with a battery operated ventilator. James needs to be disconnected from his vent carried over to the box and reconnected. It needs to be done quickly there are a lot of cords and tubes people are handling. Mom is not allowed to go and has to stay in the now empty room. Lots of tears from exhaustion and stress. She is just ready to go! 😢 This wouldn't have happened at home!
One of the RTs called us with good news that everything was successful. They were on their way back. We got him back in bed at 5am, finally got James his food and drugs he fell asleep in 30 minutes or so.
Just like to mention that the NP and all of the nurses and RTs were super nice and helpful. Everyone wanted to do what was best for James. Unfortunately this was just a fuck up by an inexperienced and over confident intern who never apologized.
We understand people need to learn and sometimes this is how they learn but ownership goes a long way. Everyone makes mistakes, and as awful as it feels when it happens, people recover and move on. If handled right (like owning up to it), a mistake can do more to impress than tarnish someone's view. Don't place blame elsewhere or make excuses.
James has had his G-tube for over a month and we have never had any issues with tummy time.
It is now 5:30am. Good Morning. 😳😩😫
P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com
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