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Niff
04-25-2009, 07:12 PM
We brought Mac home from the NICU after 7 months. She lasted 32 hours before having to go back. :( We had a massive plug issue (due to humidity changes) which sent her into respritory distress. She also has some tracheitis going on. We're at our Children's Hospital in the PICU trying to work out vent settings and moisture stuff. Our home hospital only had her on her home equipment for 4 days before discharging her, and we don't feel the settings are right. We're also having to work out what to do in order to keep Mackenzie really moist since HMEs aren't cutting it.

I just feel like we weren't prepared in the HUGE difference between being in the hospital on their equipment and being home on different equipment. I knew she could react to the vent, but I had no idea she could react so severely to our heater-humidifier and HMEs. I feel like we weren't prepared and not everything was explained to us, but then again I feel like we should have somehow known anyway. Arg.

bryantem
04-25-2009, 07:20 PM
We were right there with you. Addisyn was home for 11 days and had to be rushed to the ER. A week later, she was back in the ER. The first time, the Dr told me I was late because we weren't back within the first week.
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Xedos 6 (http://www.ford-wiki.com/wiki/Mazda_Xedos_6)

kirafaesmom
04-25-2009, 08:16 PM
We too were back in the ER just 5 days after being home on the home equipment...and yes...it was plugs and respiratory distress. I truly believe that the failure is not ours as parents. It should be protocol to set up the family with the home equipment while still in the hospital and make sure THOSE settings are going to work. There's always going to be changes once you get home since the humidity is different, but at least we would be familiar with the equipment, and hopefully a lot of the bugs would have been worked out in advance, in the hospital. We had problems with "just" humidity; Kira isn't even on a vent. Just my opinion.

lynn
04-25-2009, 08:57 PM
When we first came home on the way out the door, the hosp trach RT called- see you soon!- He had already told us that more than 90% of trach kids end right back in hosp when they are discharged. but usually after the first snag of having to be readmitted, most arent seen again for a long time.
We didnt believe that we would be back, we played with vent settings, o2, humidity for more than a month before discharge--- but we lasted 9days at home before going to ER for respiratory distress, metabolic acidosis, and dehydration.-- we were in for almost another month but the second time we made it home was now over 2 years ago(as of March 15!!!) There are alot of changes at home that must be gotten used to. I think that it is more of an issue of hospitals discharging without the correct information/ and followup for the parents. (Bloodwork, ect was done routinely and we were usually never given results-unless we pestered the nurses enough to get a dr to come talk to us- and then to just let us go with out any followup checkups of labs, co2 levels, ect... we had no way of knowing that things were spiraling down until full resp distress/ and arrest happened. )
Dont be so hard on yourself. Let Mac settle into her needed settings, and make sure she is healthy and comfortable on her vent before being discharged again.

T-bone
04-25-2009, 09:00 PM
So the vent that she is on at home is different then the one she is on at the hospital?? Did I get that right? From my experience not all kids are able to tolerate different vents from what they have been using. She might need some adjustment time to go from one to the other.

It might have been the hospitals fault for just changing her vent at home and not letting her get adjusted to the home one.

She will get back on her feet shortly.

Tess

rea74
04-25-2009, 09:10 PM
I'm surprised the hospital didn't do a room-in with you, her and the equipment you'd be using at home! I know we did...

We started on a Friday. Our medical supply company came with /everything/ that we'd be using at home. Helped us set it all up in the room that we were using in the hospital. Showed us the ins and outs of the equipment - some of the NICU nurses were in and out, oohing and aahing over her stuff that was newer than some of the things they used. :P We spent the weekend there, doing everything for Mikayla, and using all the equipment so that if we had /any/ problems at all, the nurses were but the push of a button away for us.

It also gave staff a chance to make sure the equipment would work for her as well.


I thought this was normal procedure! Perhaps it should be, if nothing else. I know we didn't come home with near the equipment some of you on this forum go home with.

drct1245
04-25-2009, 09:54 PM
It's not your fault and you aren't a failure... by any means... :hug: the experts (RTs, Drs, etc) are the ones that should ensure that you are ready. We were told that the majority of kids who go home, especially on vents, end up back in the hospital in the first month. That is what our PICU drs told us....

You are correct, they shouldn't have just tried the home vent 4 days before going home. We were on the vent for I think a month before we went home.

As others have said, don't be so hard on yourself... although our preemies are strong, they don't always adapt well to new equipment and changes.

WeAdoptKids
04-25-2009, 10:31 PM
You are everything BUT a failure. Never ever say that again. Our kids just can't do things sometimes and it takes a little longer to figure it all out. I bet you will be at this home thing again soon. Just hang in there.

Roberta

Niff
04-25-2009, 11:39 PM
Tess - Mac was on her home vent for 4 days prior to discharge. Because of hospital/NICU policy they aren't allowed to have the home equipment in the unit, but they made the exception for 4 days.

Teresa - We roomed in for 48 hours straight. Unfortunately we only had 1-2 hours of training on the home vent before going in the room. And we found out 24+ hours in that Mackenzie's peep wasn't set correctly (it was set higher than our goal).

Thanks ladies. I needed a bit of reassurance.

JWorthington
04-26-2009, 04:04 AM
You are most certainly NOT a failure. You have had to learn an awful lot in a very short space of time. It is incredibly hard coming home after the security of the hospital, and it is the responsibility of the hospital to make sure that you know everything you need to before discharge. This is a big thing for Mac and will take time to get used to. don't beat yourself up:hug:

Julie x

Alex's mom
04-26-2009, 04:51 AM
:hug: Please don't beat yourself up over this. Your posts have always impressed me. I think you are far more educated now than I was at the time we brought our daughter home. Your hospital didn't seem to do you or Mackenzie any favors - maybe it was just inexperience in discharging trached kiddos. Hopefully you are in better hands now.

KJKK8437
04-26-2009, 07:29 AM
Alex came home on a Friday, and my husband had to go away that evening for an all-nighter. Long story short -- there was an equipment malfuction in the middle of the night. Alex was adjusting to the new humidity (cool versus warm), but the quipment malfunction meant no humidity at all. We fixed it after blowing cold air down his trach for hours.

The next day I called the doctor and ended up speaking to one of the on-calls I'd never met. He was great. He got me the heater for our humidity to use PRN -- especially if the equipment stuff ever happened again. He also told me something you should hear, because it is true. He said, "You are a great mom and a tremendous advocate for your kid. Most children find adjusting to the transition home very difficult indeed."

Failure? Absolutely not. Not even close. :hug:

Baby1107
04-26-2009, 01:37 PM
You have not failed! You have done what some parents never even have the courage to do, you took your baby home machines & all. That is a HUGE step!! Just consider this a little setback. And call it what it is, another learning experience. ((HUGS)) I hope she is adjusted soon and goes home quickly this time.

sarah78
04-26-2009, 01:43 PM
:hug:

Don't beat yourself up. You are doing a wonderful job! We had the same problem with Nadia in terms of dryness when she first came home and all I can say is that it got better over time.

Fingers crossed that this is just a little blip and that you are all home again soon

xx

JacobKaden
04-26-2009, 02:27 PM
We were home for 3 weeks and Jacob kept having blue spells - the hospital discharged us too soon - he was supposed to be clear of these before we went home! Don't be hard on yourself - this is NOT an easy life we lead and a difficult blow for a first time Mom, as I was........not quite what we imagined!:hug:

Ainsley's Mom
04-26-2009, 03:32 PM
As all have said, you are not a failure! It will get worked out and she will come home again and all will be fine. It might take a bit of sorting out, but it WILL happen. It's a tough adjustment coming home but it will be okay and one day you will surprise yourself with how much of an expert you've become. You've already learned a ton so you're well on your way.

libby1205
04-26-2009, 07:14 PM
Of course you are mommy so you are going to feel guilty. We are mommys but we are not built to know how to take care of a trach baby, we have to be taught. I feel like 1 to 2 hours of vent teaching is not enough. We had our home vent for 3 months, which included teaching every night- getting quizzed by nurses and respiratory and also our DME company sends therapists at least once a week to do teaching on the vent. I just dont think you were given enough training. We dont know what we dont know! Also we only lasted 3 weeks at home and got rhinovirus and had to be readmitted for respiratory distress, high hrt rate and 102 fever. So it happens to all of us- if we have learned anything in our journey it is that we cant control everything really. And just a thought- we dont know if its working or not but we had a central humidifier put in our heating/air conditioning system- idont know if its doing anything but we figured it couldnt hurt. Hope you get home again soon!!

Andrew's Mommy
04-26-2009, 07:46 PM
It's not your fault I believe it's the medical teams. My son's medical team refused to put a trach in him the first time. I remember right before i signed the papers i asked well how will i know if he is having trouble breathing. they informed me that he will retract so i could see his ribs and nostrils will flare and when i pointed it out that he was doing that they said well he will also turn white. He was home for only 8 hours before i couldn't handle it and rushed him to the ER. Then my husband and I had 24hrs of fear not knowing if my son was going to make it through the night.

And i agree my son went back in and hasn't been in since.

It's not your fault your doing a good job.:):)

aydenava
04-27-2009, 07:58 AM
Dont feel that way,she needs you to feel confident,you can do this!Ayden was in nicu for 4 mo. & at home on day 6 he turned blue,called 911 ,so scared but he pinked up before they got here,then the next day same thing ,we were bagging him,air was going in but he couldnt exhale,rushed to ER & there they pulled 6 oz of air out of his belly....thats why he couldnt breath,his lungs were squished by his belly,nicu only told me to vent for 15 min after a feeding,so,so,so wrong,we werent prepared but after that we knew how to properly vent.Also he only wore HME when we went somewhere & we brought our neb. mach. & did nebs of sterile water because Ayden would dry up so fast.Hang in there its very scary but you CAN DO IT!!!!..Angie

Mom2TwinsPlus1
04-27-2009, 08:56 AM
Wow only 1-2 hours of training on the home vent!? I can't even begin to understand that, we had to go through 4 solid weeks of training, which honestly after about 3 days was a big waste of time, but still 1-2 hours? Wow.

Don't feel like a failure. If I have learned anything from having a trached and vented child is everything is trial and error. Constantly having to change this or that to see what works, but you will find something that works for her.

We made it home from the NICU about 3 or 4 days until we were back in the hospital, with pnemonina. We were told there is a high risk that during the first week you will end up back in

kadiera
04-27-2009, 10:22 AM
We only had a couple hours of training on the vent, but frankly it was more than we needed (engineer/computer geek parents means vents look like new toys). Still, our DME had planned 6-8 hours of training if need be.

I think it sounds like your problem is that they didn't work out the settings on her new equipment before sending you home. We had to be on the home vent long enough for them to be *sure* Alexander was good - the first week was obviously not enough time to tweak things, and while he was pretty comfy at 2 weeks, the little boy who went home with a trach right after Alexander was trached was there more than a month while they adjusted settings on his home equipment. The docs and nurses all said that 2-3 weeks is typical, sometimes more depending on the child, and that Alexander adapted more quickly than they expected. He's still not quite as low on his O2 as he was on the hospital's vent, but it's a minor issue, all in all.

I think, if it were me, I would express to the patient advocate at the hospital how much of a *liability* and *safety issue* it is that they didn't allow your child to adapt to the home equipment before sending her home. Make sure to use those words, because they seem to get a lot done in lawsuit-adverse hospitals ;)

Our "home" hospital's biomed office needed to check out all of our equipment (even the pulse ox) before it could be used on Alexander in the hospital. But doing so meant that it was all certified for hospital use, and they could use it as long as it took to get him situated.

The one good thing about our trip downtown (Alexander's first post-NICU admission, 11 days post discharge) was that they use LTV 1200 vents, which meant that the settings transferred directly back to his 1150 with no changes.

Kaylie
04-27-2009, 06:38 PM
Oh Please dont blame yourself, its not your fault that this happened. i think i posted before in regards to another one of your post how the home equipment is different and working out the adjustments would take sometime.i am sorry that she is sick tho, and hope that things are getting better. i remember when you first joined the board how i too was impressed with the knowledge that you brought with you, i could see that you were doing your homework, so if its anyones fault it forsure isnt yours. i think you have been a godsent to your family

Niff
04-27-2009, 08:35 PM
Thanks ladies for all your support. We spent much of the day today coming up with a personalized care plan for Mac and I feel much more confident in being able to handle things should they turn "ugly". The one thing we need to do before discharge is bag Mac, which we'll be doing tomorrow.

bryantem
04-28-2009, 01:11 AM
Good Luck! Unfortunately, we have had to bag Addisyn when she came home. One thing I have learned is to take the Ambu bag with you every time she is admitted into the hospital. They will just throw it out anyway and you can have a spare for wherever you need it.
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Rd48 (http://www.yamaha-tech.com/wiki/Yamaha_RD48)

Wooders80
04-28-2009, 05:28 AM
Don't feel bad about this. It's just so hard to predict what these children will do. We had quite a few trips to the hospital when Dominic was first discharged (a lot just due to us panicing over nothing too). We even started to get to know the local paramedics (ambulance staff), such was our tendency to call for an ambulance when we were worried.

Alethia
04-28-2009, 02:56 PM
:hug: :hug: Angus was home for a weekend before becoming ill with an infection. He was back in hospital for another month after that. I think these things are sent to try us.

Other than that, I find it odd that she had such a short introduction to new equipment prior to going home. Angus had been on all his stuff for ages before he was discharged. HOpe it all gets ironed out soon, and you are totally NOT a failure!

Myself
04-28-2009, 08:38 PM
Niff you are Mac's mom, and completely doing a wonderful job at it!!

You are definitely not a failure, just think in a couple of weeks, you will be looking back at this, and patting yourself on the back for going through one more "thing," to already add to the list of "things," you have been through.

:hug: :hug: :hug:
Lisa