Day 458 - Bacteria in Culture 🧫 & Bigger Trach?

Saturday, April 2nd, 2022

Since Mom slept at home, Dad had the shift at the hospital. This was the best sleep Mom has had in a long time.

Texts from Dad to Mom (our charting 😂):

9:00am "Overall a good night. We both slept from 9:30p-1a. Then the LOW PEEP alarm was nonstop. I redid the circuit setup - put him through the railing, lowered that hanging water bottle, lowered the table, and got a massive amount of water out the line. (I had RT in here with me while I did it). Then vented him for a bit from 7:45a-8:45a and diaper change since he wasn’t settling. Lowered the Farrell bag. Got done around 3am and just woke up now. He’s still in and out of sleep. Around 8:20a, the nurse, gave him the 7mL of Bactrin way too fast and he spit up more then I’ve seen. They’re doing rounds now."

Mom found out the day nurse is someone we had in the NICU. Nice but very incompetent. Definitely not our pick. We had several incidences in the past where she blew Mom's mind with her actions. Example, James was desating into the 60s. She looked and then walked away. Later she stated that she sometimes gets overwhelmed and is not good at multitasking. Dangerous!

Unfortunately the hospital has really bad service in the PICU, so Mom did not get these text updates for a while. 

10:00am "PICU Doc came in and says the ENT wants to see him outpatient. I requested they come while James is here so that way IF the larger trach isn’t the solution then we can continue troubleshooting and not have to go back through the ER for 6 hours. So … of course it’s (ENT Doc we don't like) who pushed back AGAIN and says that James is too small for a larger trach. So I requested the Pulmonologist to come by and for him to speak to ENT because the PICU Doc suggested maybe adjusting the vent settings and I said not until we try ENT idea first. So…we are waiting for ENT to speaker with Pulmonology. If ENT outpatient is the only option, then we will discharge today and see them next week. If ENT will see him today then depending on how that goes we might stay overnight again just to be sure that was the cause."

10:20am "I just did a wipe down, changed his outfit, did the trach ties with the RT, held him for a bit so the nurse can change the linens, and now he’s settling down for his nap. His Prevacid wasn’t ordered, so he didn’t get it until 10am. That could also be why he spit up the 7mL of medicine earlier. Overall, he’s doing great. Still retracting a bit though."

So we found that after about 30 hours the sputum culture is showing growth of gram negative rods. 🧫 This is the reason they have him on the Bactrim. They gave us the decision to be discharged which we agreed would be the best plan. We would give James his antibiotics at home over 7-10 days and then see where James is at with his retractions and respiratory rate. This possibly could be why James was having retractions but it doesn't answer the question why he can talk over the trach so much.

They changed the antibiotic to Cipro from Bactrim (couldn't tell you why) and add a Tobi nebulizer treatment (Tobramycin). The Cipro is a pill that needs to be cut in half, crushed, then mixed with water and given through his J-tube. The Tobi come in a vial that needs to be drawn out with a needle. The directions from the nurse and hospital pharmacy were all over the place. Supposedly the Tobi meds are on backorder so we were given the type given by IV. No needles were supplied (thank goodness we have some from left over IVF meds) and the Cipro was given to us with a handful of sodium chloride syringes which is NOT what it's supposed to be mixed with. 

Right before we left our favorite NICU Doctor stopped by to visit us in the PICU to see James all grown up! It was so nice for her to witness James' growth in person!

Mom & Dad got James home around 5:00pm. Tomorrow is Mom's birthday and Dad had planned for her very good friend to fly in tonight and for them to stay in a hotel and enjoy tomorrow. This means that Dad will be watching James for Day 2 after staying at the hospital. 

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