Fever, bad ER visit, vent, ugh!

These past three days have been really tough and emotionally draining.

It started a few days ago.   Since about Sunday, Hannah had just not been acting like herself.  Very clingy, not wanting to play, just not feeling great.   She was a bit more gookier than usual in her trach, but it was still white and not yellow/green/brown (which would lead us to believe it was trachiitis).

Thursday was more of the same.  But then in the afternoon, her nurse came in to tell me that Hannah was running a fever of 102.7 on top of everything else.  Immediately we gave her Tylenol.   Even after an hour, it only went down to 102.3.   Then she started going into respiratory distress.  She was starting to have problems getting good breaths, so I made the decision to take her down to the ER.

Oh, and did I mention that Daddy just happened to be out of town for work that night?

My inlaws came to the rescue and picked up Ethan and Abby, and then Hannah’s nurse and I headed down to the ER.  Her oxygenation was decent at that point, still feverish, so we packed her up in the car and took off.

It was the ER visit from HELL.  Same hospital we have been going to since we moved here over a year ago.  Long story short, I could tell that the physician on call had no clue what to do with Hannah after all her bloodwork and chest x-ray came back normal (ruling out bacterial trachiitis and/or pneumonia).

Also, Hannah was poked and prodded so many times I was ready to tell them to back off!   First Hannah’s IV came out, blood pouring everywhere.   Then they got the second IV in, and then respiratory had to do some additional bloodwork to check her oxygenation efficiency — it took then THREE times with three separate finger/toe pricks and two different respiratory therapists to get blood that would work to be tested!

Finally, the ER doc was ready to discharge us, although I could see that she wanted to admit Hannah just because she didn’t know what else to do because she was thinking it was a virus.    But as I told her, unless you have something you can look for, observe for, or have a gut feeling as to what is going on, there is nothing that they can do with an admittance for observation that we can’t do at home where she is comfortable (as we do have a mini hospital here!).

Then when they took the IV out, we noticed that Hannah’s hand was completely puffed up and turning purple!   The vein had blown and the IV saline (fluids) that were being given had infiltrated!   Hannah’s left hand was four times bigger than her right and very scary looking!!   I even took a picture of it there because I was so worried about permanent damage (but Daddy won’t let me post it because he doesn’t want to see how bad it was because he is afraid of being more even more stressed out).

All the ER doc did  was continue to apologize, but I was expecting more.   Tell me how to make it better.  I kept offering ideas like should we put cold on it?   Should we elevate it?   “Oh, yes, you should do that.”   UGH!

We left the ER (5 hours later), and I felt horrible for Hannah because we left with her in worse condition than when we got there!

Fortunately, after 24 hours later (and keeping her arm above her body while she slept), her hand was back to normal.

Yesterday and today, she was still feeling not so great, fevers in the 101 range, etc., but manageable with Tylenol and Motrin overnight and then she was pretty mellow during the day.

Then around 4 pm today, Hannah’s nurse woke me up (I had crashed because I was exhausted) because Hannah’s temp had hit 104.5!   Immediately we started with the Tylenol, cold shower, cold washcloths, fluids, etc.  It was a constant race to work to get her fever down as fast as possible.

It took us a good hour before her temp went down to 102.3 (all her temps are rectally taken for a core temp – not fun!)   But that entire time, I was debating whether or not to take Hannah to the ER or call the paramedics to help us better access her (our pulse ox was acting weird!)

The scary part was that she would desat quite a number of times into the low 80’s.   We had broken out the oxygen and that kept her in the upper 90s.   Once we got her temp down into the high 101s and lower, her oxygenation started to go back to normal without the need for oxygen.

Finally, a few hours ago, her fever broke and she has been sleeping comfortable for about 4 hours now.  I’m still monitoring her oxygen saturations and breathing, but for now we are under control.  Although I just have a feeling we are not out of the woods with this virus or whatever it is.

NOW for my vent…  It is so friggin’ frustrating not being able to have someone who can help us figure out what is going on with her!   The entire time, I sit their weighing whether or not to take her to the hospital by saying “what would they do that we can’t?”  I feel like no one ever knows what to do with Hannah. and *I* have to be the one to tell them what to look for or explain in great detail to docs who sometimes don’t completely listen.

It sucks that we always have to be the ones “in the know” as to what to do and never get a chance to rely on the expertise of someone else because Hannah is always “so different” than what they are used to seeing.  I feel like if I go back to the ER (since we got all the bloodwork and chest xray done already, results not back on the viral panel), *I* would have to give them other things to look for or test for.

So emotionally exhausting and friggin’ frustrating!!  Worst of all, I still am not convinced we are dealing with a virus (WBCs are normal) and these high fever spikes a few days later, but I’m not sure what else it could be and really don’t have a physician who is really willing to figure this out.   (Although we have an appointment on Wed with her pediatrician to go over the viral results that should be back by then).

For now, she is fever free and sleeping.  I hope it continues.