Friday, December 30, 2011

Medical Update

So, if you're not friends with me on Facebook, you may not know about our little trip to the ER on Wednesday.  Yes, we were just discharged the day before...almost exactly 24 hours before we went back to JHH. 

Abby tolerated her feeds all night (she is fed continuously at a slower rate) but couldn't handle her daytime feed--much more food in a small amount of time.  She got sick three times in 5 minutes and it was bubbling out of the trach.  After a call to our pediatrician, we were instructed to go back to the ER.  Unfortunately, the ER doctor just kept saying, kids throw up.  That's what they do!  Yes, but kids do not throw up from their trach!!!  She failed to see our (and our pediatrician's) concern.  They ran all of the tests again to see if anything was missed.  They attempted to start and IV, but couldn't get it.  They drew blood, but it clotted.  After an eight hour stay and a lot of arguing with the doctor, we were sent home.  It was pretty much pointless, although we really feel like she should have been admitted.  Our pediatrician did too, and said as much when we followed up with him the next day.

They still don't know what she has!  They're calling it viral at this point, but we seriously doubt that it is viral because Abby was around a lot of people the few days before Christmas, and us every day...no one has gotten anything that are similar to her symptoms.  I really think they're just saying that it is viral because they don't know what else it could be.

She got sick again today, so I called GI to see if they had any recommendations.  The doctor was none too happy with the ER doctor that she was not consulted about Abby, and said that her rate should have been slowed way down when she first started to be sick.  Now, Abby is only taking pedialyte at a very slow, continuous rate.  She'll not go back to full feeds until Monday, at the earliest.  The goal is to try to keep her from getting sick anymore.  (In case you don't realize, throwing up is really dangerous for trach kids because they have a hole that leads right to their lungs.  Vomit can get into the lungs and cause aspiration pnemonia very easily.  You really want to avoid getting sick at all costs!)

We're also all worried about dehydration because there are other tummy issues going on that have resulted in numerous clothing changes each day!  Her wet diapers have been minimal, but I'm hoping that this continuous feed of pedialyte will help.  We are keeping an eye on it.

My poor girl seems fine when she isn't eating (regular feeds--pedialyte is fine), but she is absolutely miserable when she is getting sick.  She fell asleep almost immediately after her stomach was emptied.  So sad!

So the saga continues...just what does Abby have????  She'll have been symptomatic for a week tomorrow.

4 comments:

Anonymous said...

Hi Julie,

I think you're doing a great job with your situation. You are you're child's advocate and you might be able to help these docs figure out what's going on...you're absolutely right kids with trachs are at high risks for aspiration...I hope the hospital did a chest x-ray at least. Don't know what antibiotics your child is on but a side effect of most is that explosive diarrhea she's been experiencing. While in the ER were you seen by a resident or a fully licensed MD, were their consults made? When it comes to little one sometimes it is necessary to be the pareHi Julie, 

I think you're doing a great job with your situation. You are you're child's best advocate and you might be able to help these docs figure out what's going on...at least I hope so. You're absolutely right kids with trachs are at high risks for aspiration especially when laying down and receiving feeds, and that's why the head is to be slightly elevated during sleep periods. I hope the hospital did a chest x-ray at least. Don't know what antibiotics your child is on but a side effect of most is that explosive diarrhea she's been experiencing ESP if she's been on it for a while. While in the ER were you seen by a resident or a fully licensed MD, and if not an MD were their consults made? When it comes to little ones sometimes it is necessary to be the insistent parent with a billion questions than simply trusting the experts because Just because one is an expert does not mean they know everything. The medical field is a continuous learning process, treatments change, new disease emerge, new diseases and bugs are identified and so on. For anyone to tell you that kids just throw up cause they're kids is not acceptable, and feel free tell em that "I'd rather you tell me that you don't know but you're doing everything to find out" and if ever you feel that your child should be admitted, tell em, they will admit her. Again I think you're doing a great job and i don't want to bring about anxiety or worry just want to keep you informed you probably know all this already but if not then now you know. If you can check out this site about Josie King a 18 month old and the care she received at a well- known hospital that failed to take the mother's concerns seriously. I wish you all the best. You are one amazing strong woman, i don't know how you do it but Rock on Woman! Many blessings to you and your family, God Bless.el 
http://josieking.org/page.cfm?pageID=10 nt with a billion questions than simply trusting the experts because Just because one is an expert does not mean they know everything. Again I think you're doing a great job but check out this site about Josie King http://josieking.org/page.cfm?pageID=10

Anonymous said...

Hi Julie sorry about the iPad malfunction above here's what I meant:

I think you're doing a great job with your situation. You are you're child's best advocate and you might be able to help these docs figure out what's going on...at least I hope so. You're absolutely right kids with trachs are at high risks for aspiration especially when laying down and receiving feeds, and that's why the head is to be slightly elevated during sleep periods. I hope the hospital did a chest x-ray at least. Don't know what antibiotics your child is on but a side effect of most is that explosive diarrhea she's been experiencing ESP if she's been on it for a while. While in the ER were you seen by a resident or a fully licensed MD, and if not an MD were their consults made? When it comes to little ones sometimes it is necessary to be the insistent parent with a billion questions than simply trusting the experts because Just because one is an expert does not mean they know everything. The medical field is a continuous learning process, treatments change, new disease emerge, new diseases and bugs are identified and so on. For anyone to tell you that kids just throw up cause they're kids is not acceptable, and feel free tell em that "I'd rather you tell me that you don't know but you're doing everything to find out" and if ever you feel that your child should be admitted, tell em, they will admit her. Again I think you're doing a great job and i don't want to bring about anxiety or worry just want to keep you informed you probably know all this already but if not then now you know. If you can check out this site about Josie King a 18 month old and the care she received at a well- known hospital that failed to take the mother's concerns seriously. 
http://josieking.org/page.cfm?pageID=10 
I don't know how you do it but Rock on Woman ;) I wish you all the best. Many blessings to you and your family, God Bless.el 

Julie said...

Wow, I'm not sure who you are, but the link you gave me hit close to home, considering that is our hospital and the IMC is where Abby always is. I hope that nurse was fired!! Thanks for sharing it. BTW: who are you?

Anonymous said...

Sorry I started to write my name but got distracted. The thing about Sorrel's story is that sadly it happens more often around this country than the public realizes and it's not just nurses but all healthcare worker, CT scanners, dentists, doctors, and CNAs, it's an epidemic but it's gotten a lot better over the years but there always the possibility of human error when proper guidelines aren't followed. I first heard of Sorrel and Josie king from a newhire hospital orientation here in the great state of TX. Her story left every single nurse and doctor in tears literally...I left there in tears and wondered if I ever wanted to continue my career in medicine, the video (which i'm sure you can find on youtube) is so much more powerful.  Remain vigilant about all meds prescribed and the reasons for them, and for any procedure make sure her name/date of birth/procedure is verified before she leaves the unit and when she arrives in the new area ex. cat scan, OR or  x-ray, ESP if she needs sedation cause sometimes solutions are mixed up....urgh!  My own daughter almost got some work done on the wrong site....luckily when the doc was explaining what he was going to do i realized that the papers he was looking at was similar but did not have my daughter's name, that was a near miss I would have hurt someone over....your daughter is precious so I had the urge to share but not to scare, those are not my intentions at all.  I guess the best advice is do your research, ask lots and lots of questions, get second opinions if something doesn't sit right with you but above all simply pray pray and pray which I'm sure you do anyways.