Day 226 - 💉 Blood Work, 🤟 Sign Language, & 👂Hearing Success!

Friday, August 13th, 2021

💉 Mom requested that James get Versed for his blood labs. It takes 15 minutes to kick in. Unfortunately they didn't wait and immediately started with sticking him. Mom sounds like a broken record everytime they need to do labs, letting them know that James is a hard stick, his veins are branched out, he is strong, that they will get the catheter in and then he will pull and you'll lose it if there aren't enough people holding him down. Every single time they have to stick him multiple times and say, "Man he is strong". Yes, now can someone make a note in his chart after 8 months? He was stuck 3 times. The first tube clotted so they needed to draw again. Mom asked if they could check for Factor V Leiden which is a clotting disorder that she has; there is a 50% chance that it gets passed down to James. 

😷 Covid is rampant here in the PICU. Our neighbors have it and the staff has to where isolation gowns when entering. 😬

💩 Gave James a glycerin in order to get him to have a bowel movement. Immediately went with the glycerin at all, so we did not count that as being administered.

GI Nurse Practitioner came by answer our questions concerning what's going on with his GJ. She let us know that she does not want us putting any split gauze around the stoma. We can use aquaphor when needed. She said that the gauze causes granulomas however we have had split gauze around his G-tube for 4 months and have never had a granuloma and his site looks really good. This is conflicting information from our GI surgeon. She also wants him to sit up all the time, which is the opposite of what physical therapy wants. 

🤘 Then Speech therapy came by. This is actually the same woman that we used to see in the NICU, well one of them. However at this time James was not awake so she wanted to come back. But before she left and came back she wanted to have a really long discussion with Mom about something she said a month ago that she thought Mom misconstrued or something. Either way mom is trying to stand there and listen to her while she is on no sleep. LOL 😩

🫁 Mom and Dad did trach care and changed James' ties without swaddling him. It was actually lot easier because he wasn't trying to fight us. This time we also had him sitting up which is not Mom's preference but Dad felt that it worked well. It's kind of dangerous once the ties are off.

👩‍⚕️ Our doctor came in to assess James and he immediately started screaming and crying. It was hilarious. She said she would come back when he calemd down. Mom noticed that she accidentally did not unclamp his G-tube that was venting into the preemie diaper. His G-tube was leaking from his stoma and had soaked through his shirt. This was the second time that Mom had changed the preemie diaper and forgot to unclamp. It's kind of crazy that and that short amount of time James is already having severe reflux. This seems worse than before the GJ. The doctor came back in she didn't really provide an update. Mom asked if we needed to wean the PEEP to get discharged because we're sure that they probably discussed this in their Tuesday 3pm meeting that they have every week. She did not have any answers.

👂 Mom then got him back to sleep, but as soon as she did the opthamologist showed up to redo James' hearing test. He stayed asleep for a little bit but the test was fairly long and as you can see by the pictures below they were a lot of wires, clamps on his earlobes, and things in his ears. There was no way he was saying asleep for this. Good news is that after the third attempt of a hearing test James passed with flying colors! She said that everything looked great and that we should follow up once he is 1 years old outpatient. I think the key was that we had an actual ophthalmologist do the test instead of some intern like we had in the NICU. The equipment was completely different and it was way more in depth.

🤟 Speech came back in to work with James after the hearing test was over. Literally today has been back to back with people coming in the room. Since Dad had stopped by Mom used the opportunity to take a shower down the hall in the public bathroom that everyone gets to share. 🛁 Speech worked with James teaching him some sign language and giving him some tastes of sterile water. He seemed to tolerate it fine. We are teaching him words like "more", "bye", and "all done". The idea of having speech therapy with a trach gtube baby is that you don't want them to have an oral adversion and down the line we would try for swallow study outpatient. James will eventually eat by mouth and we want this to be an easy transition. Sometimes with trach babies it's easier to skip bottle feeding and go right to purees because these are thicker and they don't aspirate as easily. Learning how to suck swallow and breathe all the same time is really hard for a baby that has not been doing this since birth. That's what he would need to do in order to bottle feed or breastfeed.

😭😡 From about 5pm to 8:30pm James was completely inconsolable. His diaper was clean, Mom had suctioned several times, and his G-tube was being vented to a diaper, but Mom also tried venting to a syringe to see if that would help. Mom patted him on the back for several hours. We gave him a Motrin right when it started because it just seemed like he was really irritated but after the hours went by we also gave him a rectal Tylenol. He was completely drenched in sweat, screaming, eyes were bloodshot. Mom was getting concerned so the nurse asked the Physician Assistant to come in to take a look. As mom was patting him James let out a large burp and he seemed to calm down after that. So did him needing to burp cause all of those symptoms or was he having withdrawal and also needed to burp. Who knows? But of course the doctors don't think that he was going through withdrawal at all. Have you ever drenched yourself in sweat because you needed to burp? 

Tonight we actually had a really good nurse from cardiac. It was surprising. She came in when she saw James had a spike with his heart rate. Which makes sense because if his heart rate is normally below 80 when he's sleeping but on the monitor it shows 180 yeah probably a good idea to come in the room and see what's going on. It also allowed Mom to actually get a few hours of sleep. Most nurses don't ever come into the room because there is a note that says James is "hands off" night. But what that really means is that we don't want x-rays, blood work, unnecessary temperature checks, or blood pressures done throughout the night when he is supposed to be sleeping. But it should be pretty common sense that when James needs help there should be a nurse coming in the room. He may not brady or desat anymore but he does scream bloody murder and more importantly needs to get suctioned frequently or he will get a mucus plug. It's fairly easy to recognize when those things need to get done because his heart rate will increase to let you know he's awake. 

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! 😭