Frustrated

[alparen]

For like 2 weeks now that Samantha has been off cpap and on and off low flow oxygen she still has desats. Some nurses are saying it's reflux others are saying it's not shes just all over the map.
FIGURE IT OUT!!!! HOW HARD IS IT TO FIGURE OUT!
this nurse that i talked to today who also had her yesterday thinks it's reflux and said they are supposed to write down when she has a desat and figure out if it's feeding related. They think she might hold her breath and push her food back down when it starts to come up and they are again talking meds if that is the case... a few days before that it wasn't reflux it's just swinging and her way.. few days before that it's reflux..
Why are they to stupid to just write it down!!!! Serisouly they know when she is fed write the time when she has a damn desat so you can see if it's during a feeding time or shortly there after she eats and then voila you will get your answer!!!
She hasn't had a desat yet today with this nurse. They upped her feed again from 19ml to 21 ml and the nurse said she'll stay at that for a little while seeing as is gaining weight.
They upp her feeds so damn fast to let her tummy adjust a bit! Today they are measuring her tummy to make sure it's not getting to full. The nurse made a comment abouth ow big it is right now and laughed but said it's ok she is handling her feedings.
I can understand she is 34 weeks and 3 lbs 6 ounces they want her to gain an ounce a day which she has been doing if not more since being taken off my breastmilk and put on full formula. ( they had to add calorie supplemnt to my breastmilk cause she wasn't gaining any weight hardly and then my breastmilk dried up)
But seriously how hard is it for them to just sit down and figure out if it is reflux or not?? This is so maddening. The sooner they can figure it out and she stops freaking desating and can go on bottle feeding the sooner they will ship her down here to the hospital by my house. I'm so frustrated! I can't wait to go up Sunday I will be having a major chat with a dr. and something will be done to figure it out. I'm sick of these stupid asses dragging their feet with her. I have hated her being at this hospital from the moment she got shipped there. Worst decision ever. I should have had her shipped back to the other Toronto Hospital.

 

[25weeker]

my los oxygen swung all over the place until 38 weeks. The nurses that knew her always left her to self correct but when a new one looked after her they were up and down like yo yos because when she desatted they upped her oxygen and 2 mins later it was too high.

None of them listened to me when I said she self corrects so left them to run themselves ragged!

I hope she stops soon xx

 

[alparen]

She always self corrects so they never bother with turning anything up or down. Ir's just the nurses all have varrying opinions on wether it's reflux or not or bothand keepsaying the dr might try this or that but nothing ever gets tried or done. She also had blood work done a few days ago and it showed something was super low in her blood that is making her really susceptible top infection so they have to be really careful with her until it self resolves. The nurse told me tuesday she was to have more blood work wednesday to check see if it was resolving.. i called yesterday and there was no blood work ordered and the nurse had no idea what i was talking about.
It's like they all have an opinion or they know absolutly nothing. So I want to know exactly whats going on.

 

[25weeker]

It's might be her Hemoglobin that is low which can also cause them to desat more.

Around Samantha's gestation they like to try and leave it so her bone marrow kicks in and she produces her own red blood cells. My lo was borderline for weeks but they held off in giving her blood transfusion and thankfully she eventually started producing her own.

Sorry to hear theyare so disorganised. It's a stressful enough time without them making it worse

 

[AP]

Oooh reading that ^^^ that whole scenario seems familiar!! and we did end up with another transfusion in the end, which was nothing really, and perked her up!

 

[alparen]

The drs opinion is her lungs are just still underdeveloped as she is still a premie. she said if it is reflux they aren't toconcerned as 70% of babies have reflux and seeing as she is still steadily gaining weight it's not concerning. Her feedings are supposed to stay at 21mls for awhile. She said if she is still staying with desats and bradys by the time she is closer to term or above term then they look more into reflux and then trying out maybe a thicker stay down formula or meds if needed be but for now just to let her eat and grow. She said she is making great progress slowly but surely.
She is also going to be weened down on her feeding time starting next week. |Once they have her feeding full feeds in 30minutes then they will start her on bottle feeding. So within the enext 2 weeks she should be starting bottle feeds.
She also had a blood test on monday that came back that she was super prone to infection. (bot sure the word for what they saw) and it was not something they could fix it is something that your body regulaes on it's own so it had to come back up on it's own. So when i called yesterday i asked the nurse about it and she was supposed to have repeat blood work to check and the nurse had no idea what i was talking about. So when the dr called me back i asked her about it and they gave her blood work this morning and her levels had come abck to normal. The dr said she was shocked when the blood work turned up bad because that has never happened to Samantha yet for that particular thing. it's some kind of blood count thing. luckily that came back normal today.
So i'm still kind of frustrated but happy to have gotten some answers on what is going on. I'm more frustratedat the nurses for saying all those things when it's just their big fat useless opinion. this is the last time I ever listen to a nurse about her desats and bradys being reflux or not.

Her hempglobin has been good i had mentined that last week when i was up there because she has had those issues ( 3 transfusions so far) and she does desat more when her bloods low.
All i wanted was some concrete answers. Why can't the dr's just get ahold of me and let me know? why do i have to chase them?

 

[alparen]

omg i am so sorry that was a stupidly long post lol

 

[25weeker]

Dont be sorry for long posts. That's what this forum is for to vent and ask questions and sometimes to have a laugh as we are all tough cookies

 

[alparen]

lol thanks hun. I forgot to mention along with her low blood she desats and always turns right pale and the whites of her eyes turns blue and she acts listless with the nurses so she is good at tipping them off to that. They always noticed that about her. at least the are smart enough to see that in her lololol
Wow I worked myself into a state to the point i have a small headache now lol.

 

[Srrme]

Elias was on oxygen during his entire stay in the NICU (and came home on oxygen). He was on 21 percent until ONE week before discharge, then they literally jacked it all the way up to 100 percent because he had a few spontaneous desats. He was only on it during his feeds when he came home though, and that only lasted a week. He had reflux, and just like you, they couldn't make up their damn minds if it was reflux or not at first, but IT WAS because he only desatted during his feeds (we talked the Doctor into taking him OFF of the oxygen, and only trying it during his feeds, which helped, and stopped the desats completely!). Have they tried spreading her feed out to 40-60 minutes?

The Doctor's NEVER let us know anything, unless we asked. No one would tell us anything. We had to read his charts ourselves, or listen to the Nurses whisper to each other to find anything out.

 

[alparen]

Her feeds are over 60 minutes. they are dropping the time in a few days to 45 minutes to see if she can handle it. She was 1:30 minutes a few weeks ago as she was desating like crazy everytime she ate. then upped the time and she was fine within a few days. So they put it back down to an hour.
They want to start taking her time down now to get her started on bottle feeds and/or some sort of gravity feed.
the dr simply thinks it just her not being developed enough yet but is not ruling out reflux yet.