Questions for RT in pediatrics

My baby girl was born a micro preemie at 24/3. Spent 7 months in NICU and two months in a transitional care unit so dad and I could learn everything about Trach, ventilators, and everything that goes along with it. She has CLD/BPD (same thing) because she was born so tiny and early. We are supposed to be off the vent and possibly decannulated in March.

My question for y’all is this:

When my baby girl is on her ventilator and heater at night there is a ton of rain out in the circuit; what can I do to prevent so much rain out?

She’s only on the heater at night because during the day she moves to the kitchen or living room with me and we take the ventilator to the other room but not the heater. We use an inline HME during the day.

My baby girl is on the Vivo 45LS ventilator and her heater is the 850. It’s a single circuit so there’s one probe that goes in the circuit on the heater and another probe up near my baby girl. There is a whisper swivel. We just recently switched from the Astral 150 to the Vivo 45LS ventilator I never dealt with this issue with the astral. Hopefully you can give me some insight. I’ve tried covering the probes so the air won’t blow on it and there’s still a ton of rain out. I also put quilts on the outside of her crib to try to avoid the air blowing directly on the circuit. We have a window AC unit in her room and we live in Texas so it’s not quite time to quit using the AC.

Thanks in advance and if you need any more info I’m happy to share c and/or post photos of setup if needed.

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u/MrsReynaRocha — 8 days ago

Wildfire N. Texas

The wildfire here in Texas is about 8 miles from my house. My house is not threatened at all and it’s not moving towards us but all the smoke is. It’s finally began to take a toll on my sweet baby girls lungs and we have started a round of steroids at home.

The steroids will take 2-3 days to fully take effect and I have been giving PRN ibuprofen and Tylenol and have added an extra nebulizer during the day. Anything else I can do to make my baby girl more comfortable? I hate seeing her coughing and gagging up boogers.

u/MrsReynaRocha — 2 months ago

Teething

When did you former 24 weeker start teething? My baby girl is 9 1/2 months, 5 months adjusted and has been so agitated today and fussy. She won’t sleep for long and wakes up crying. The only time she won’t cry is when we’re holding her. I don’t know if she’s teething, or if she’s just having a bad day?
I’m a FTM and I just brought her home so I don’t know what to expect

Her temperature, and her monitor is reading great. I haven’t had to go up at all on her oxygen needs. I just want my baby girl to be comfortable and hate to see her crying and I don’t know what to do to fix it.
Also we weaned her sildenafil yesterday and we are also weaning her gabapentin every three days. Maybe that could be it? I reached out to her pulmonologist and she said to continue the weaning as scheduled.

u/MrsReynaRocha — 3 months ago

Hooks for crib

So as you all now my baby girl came home with a Trach and g button. I have a carrier “hook” thing I found in Etsy for her milk machine but it’s tearing up the wood on her crib.
Does anyone know where I can find a hook or something that I can attach to the bed and hook her milk pump holder on so it will quit tearing up her crib? And also something similar for her suction rope??

You can see where it’s tearing up the wood on the crib in the photo and also how I have her suction rope “tied up”
Thanks in advance 😊

u/MrsReynaRocha — 3 months ago

280 days later WE ARE HOME

We made it home today!!! Such a happy, busy, crazy day!!! But I have my sweet baby girl in her crib next to me at home and it feels AMAZING!!!

u/MrsReynaRocha — 3 months ago

Discharge date set!

After 9 very long stressful months in the hospital we have a discharge date of July 21st! Bittersweet moment incoming!

u/MrsReynaRocha — 3 months ago

Trying out the stroller

We have began using the stroller because it has the necessary storage for all my baby girls equipment and she LOVES it! 💗💗💗

u/MrsReynaRocha — 4 months ago

My baby girl will be on home vent within a week! 🎉💗💗💗

We only have one wean left in two days on the hospital ventilator and then my baby girl will go from the hospital ventilator to the home ventilator! Then we can FINALLY begin our CPR classes for Trach and then planning her discharge date! Can’t believe it’s almost here. After 8 months in the hospital. We will get a discharge date soon!

u/MrsReynaRocha — 4 months ago

Update: Resp therapist

If you guys read my last post you know last Friday a floater RT played with my daughters vent and sent her into respiratory distress because she didn’t read my daughters chart.
I spoke with the RT manager yesterday… all I can say is wow. 😨

the RT manager was a COMPLETE bser and said they did nothing wrong. I told him that if it happens again I won’t go to him. I’ll go find the higher ups and speak to them. He said it’s not the RT fault and that it was okay to take my baby girl with BPD/CLD from 35% to room air in a matter of 2 hours and it’s my daughters fault for satting good until she showed respiratory distress. Pissed. Me. Off. But I told him if it happens again that he won’t be contacted and it will be taken care of. It was negligence on his employees part for not reading my daughters chart and not knowing where she was working and somehow it got turned around on us.

The nursing staff was not happy and gave me names and number to reach out to if it happens again. This is suppose to be one of the best children’s hospital in TX. How is this sort of negligence allowed? Especially sending my sweet baby girl into respiratory distress.

u/MrsReynaRocha — 4 months ago

Just wanted to share 💗💗💗

My baby girl loves her bath time and takes the cutest photos. I’m convinced she poses for these pics on purpose.

u/MrsReynaRocha — 4 months ago

Floater respiratory therapist

Today my baby girl had a floater for her RT. From my understanding this lady has never worked in the transitional care unit. I was told by my daughter’s pulmonologist that we won’t go below 30% on her fiO2 until we go from a hospital vent to a home vent.

Today at about 1 pm my daughter and I both took a nap (had a late night last night b/c days & nights confused) and the RT came in turned my baby girl from 34% to 21% and told me oh she was on room air but then started desatting so I turned her to 25%.

I’m so mad right now. My baby girl has had elevated heart rate and now will need some type of PRN med to help her fully recover from this RTs stupidity.

Should I go to the RT boss? What do I do in this situation. It makes me wonder if the RT was in here playing with my baby girls ventilator how many other babies did she do the same thing to today???

Very irritating. Am I overreacting?? If I am please tell me

Help!

u/MrsReynaRocha — 4 months ago

Rewatching

So I’m rewatching SLOMW after everything that has happened to see if I can spot any red flags I looked over before. And OMG. Taylor is insane beginning in s1. Jessi just gives me the ick throughout all the seasons. She 100% let the fame go to her head and she acts like that s*** don’t stink. I can’t stand Jessi now. What are yalls thoughts? I actually see why Whitney stepped away multiple times. Not worth the mental torture of being in that crowd.

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u/MrsReynaRocha — 4 months ago

Such a big girl

Crazy to think she started at 1 pound and 3.9 ounces and now my baby girl is all rolls!!! 💗💗💗

u/MrsReynaRocha — 5 months ago
▲ 278 r/predaddit

Just want to show off my husband. He doesn’t have Reddit but a great dad!

We spend 7 1/2 months in the NICU. 218 days. But our baby girl has her dads strength and resilience 💗💗💗

u/MrsReynaRocha — 5 months ago

Transitional care before home

Anyone with a trach/g-button baby..
How was the “transitional care” and learning everything for you?

I have been trying to do one “session/class” a day because it also involves my baby girl and I don’t want to overwhelm her.
Will my nerves ever calm down? I’m a nervous wreck changing her Trach ties or anything with her Trach.
I want it to become second nature to me.

Advice!!! Please! 💗💗💗

u/MrsReynaRocha — 5 months ago

NICU grad today 💗💗💗

Today after 218 days in the NICU we are graduating!!! We aren’t going home yet, we have to go to the transitional care unit for Trach Boot Camp for Dad and I. BUT WERE GRADUATING THE NICU!!!
Literally have tears while writing this. I’m so proud of my sweet baby girl! Such a strong resilient little baby. 💗💗💗

u/MrsReynaRocha — 5 months ago

Finally starting to hold her head up 💗💗💗

My baby girl has been in bed her whole life and now since she has her trach we are able to do more and more with her. She held her head up all by herself finally! So excited! She really enjoys looking around at EVERYTHING!

u/MrsReynaRocha — 5 months ago