So, Q went in to have her MRI and we were admitted last night (11/5) for observation. She did pretty frickin good and had super awesome saturations and even a low heart rate. I just wanted to SCREAM I was so frustrated that we see 80 sats but when she goes inpatient, we deal with 90 saturations! Like... REALLY?! Quinn... really! So anyway, Q does pretty excellent throughout the night and by morning, I knew it was time to go home. So the doc is coming in to discharge us and Q's stomach is only slightly distended, but she still hadn't pooped since Wednesday (it's now Saturday) but whatever, take her home, maybe get her a suppository or enema and hopefully things will start moving. But, something was itching me. I don't know if it's because Q is notorious for being discharged a little too soon and we end up driving all the way up the mountain 1hr 45mins back home only to end up back at the children's hospital within hours, or if I was just being a worry wart, but anyway... the doc was like I noticed in her records she is o2 dependent but she has had really great sats here, could you explain that to me. So I told her that i had NO idea but that she just has low sats, it's recorded in her pedi office and on my phone. her sats are low at home but everytime we come here they are usually pretty high and perfectly normal! <--- not always, but usually. Apparently, she overheard us talking to our really awesome roommate about living in the mountains. So she asks me... do you live at an elevation over 3000 feet?.... ummm... yes, it's 3500 feet. Hello! lights come on! she said that's probably why she requires o2 up there and not really down here. yes! that makes so much more sense! I told her how crazy i was feeling that I just wanted to throw in the towel and she said that her o2 should definitely be covered because she obviously needs it at the altitude we live at. Makes sense, right?
So, she hands us our discharge papers, we sign our discharge papers, Pull Q's IV, get Q dressed, pack up and start heading out the door, but when I pick up Q she is sweating, not waking up and hot. So I said.... hmmm... nurse, could you come take her temp? So she did and sure enough, Q had a fever. So, her discharge got delayed for a few hours. So we didn't give her tylenol because the doc thought it was just a fever from anesthesia (yes the anesthesia that she had 20 hours ago). So we wait about 2 hours and Quinn's HR is in the 160s, her breathing is very fast and her o2 sats start dropping. We put her on o2 and that seemed to make things better, placed her on some icepacks because she said she was really cold, but she was burning up and just wanted a blanket. and let her sleep all day long. By 630, her fever was only going up and so the nurse gave her some tylenol and informed us that we weren't going anywhere tonight. her tummy is distended and is hurting her.
So the attending for nightshift comes on at about 8pm and said that the day doc had asked that she check on us to see if we were ready to be discharged... i'm like... what? Doc, did you really read her chart? Did you even speak with the nurses? Do you know that she has had a fever all day, is now on o2 and is finally resting easy on tylenol? Have you felt her stomach? Because it's a bit distended... And she goes and touches her stomach and says... oh, yeah, it's probably best if you stay the night.... uh... yeah... gggrrrr!
So right now, i'm a little frustrated because for one, I feel like since I have a hospital at my house, I should automatically be able to take care of her, which I should, but since we are already at the hospital, I'd really just like to make sure nothing serious is brewing! They haven't even taken her blood or cultured the urine that was clear this morning but is now dark brown. And I don't care what her bowel sounds are right now, her stomach is acting up and I'd like for her to poop before we leave. I jsut think it's dumb that I have to basically hold the doctor's hands in order to get her as stable for discharge as she was upon admission.
If she has a fever by morning or needs round the clock meds to keep it down, i'm going to ask that they take blood and culture her urine and to be sure she poops before we leave... suppository or enema... whatever as long as we do not have to come back after we leave.
Plus, i need her HEALTHY for her surgery. It's been scheduled for the 19th of this month! So we need to have a really healthy Quinn. if it doesn't get done on thsi date, chances are it won't get done till 2011.
5 comments:
Have they run a UA at all? Brown urine can be a lot of things, one of which is myoglobinuria. Myoglobin can really damage the kidneys if she isn't on a lot of fluids to help flush things out. Probably not that, but I'd get it checked just in case.
FYI the only reason why I suggested that is because anesthesia can cause miligant hyperthermia which causes muscle damage. It is kind of delayed, but it is still possible. Inhaled anesthetics are the usual suspects but mitochondrial disease can cause some intersting reactions.
I hope Quinn is now feeling better!
Wyatt has also ran fevers a couple days after having anestesia...and they blame it on the anestesia everytime. And ugh! My biggest pet peeve is doctors (especially residents!) that don't read the chart and just spout off random things. DRIVES ME CRAZY!
I hear your frustration Sarah. I hope Quinn is able to break the fever and head home. She is in my thoughts and I hope they can do the surgery on the 19th.
Wow! You are one incredible mother! This is the first time I have been to your site and read about Quinn. What a journey you have been on. I am a NICU nurse in Canada and am so impressed by your level of research into your child's issues. I am sure you will soon get Quinn's official diagnosis. From my humble perspective, I think you have made it but now you just need someone with the "MD" after his or her name to confirm the details. It does often take longer when you are dealing with something so rare.
Just to answer your question about the "sparing" in your MRI research. Usually when there is sparing it means the disease has not affected that area (or not affected it as much...at least at that point in time). The area has been "spared" or rather has been left alone and hopefully intact.
Keep up the great work Mom, you are one smart cookie!
Hugs to Quinn!
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