Where We’ve Been

…at least for the last two weeks…

Two and a half weeks ago, Piper started feeling a little “punky.”  She was just mopey, a little quiet, and started getting a little cough.  I figured over the weekend, she could rest up and be good to go for school on Monday.  After all, the drop-off on Friday was the easiest one yet and she was finally settling into the whole school routine. 

Monday came around and she acted sick.  Not terrible sick, but sick enough that I wanted her pediatrician to see her and check her out.  Low grade fever for a few days and that same cough (which had gotten worse.)  They tested her oxygen levels (which were fine) and did a chest xray to confirm Pneumonia.  Fantastic.  She was sent home on antibiotics (first time ever) with hopes that maybe she’d be able to go back to school by the end of the week.

Tuesday I really thought she was feeling a little better; thought that, with a good night’s sleep, she’d be rebounding the next day.

9:30 rolls around and I go in to check on her before I went to bed.  She was definitely acting a little out of it (tossing around, breathing fast, etc) so I grabbed our fingertip pulse oximeter to check her.  Just for my own presence of mind.  First toe I checked said 70.  Knowing that it was false, I tried the other foot.  70.  I picked her up and took her to the living room- surely our oximeter was just not working.  Tried the fingers.  Both of them.  70.  She was dusky, breathing really fast and through her belly.  I tossed a coat on and ran her up to Urgent Care figuring (hoping) that the O2 level wasn’t reading correctly.  We checked in and they put her on the pulse ox- 70.  She was considered “critical” so as soon as we stepped out of the check-in room, we were swarmed by over a dozen physicians, nurses, respiratory therapists…  Piper, of course, was terrified.  It was ugly.  After a good hour, we finally got oxygen on, an IV in (who knew that a 23 pound child in significant respiratory distress who’s been sick for several days could actually out-muscle a team of EIGHT trained professionals???), and an xray taken.  They said that her xray didn’t look much worse than the day before, so they were hoping that maybe she was just dehydrated, which makes pneumonias worse.  We were admitted for the night with hopes that the next day would be better.

She didn’t do terribly that night; but then again, she didn’t get to go to sleep until almost 2.  They started on IV antibiotics and watched her oxygen.  We were given the choice of staying there at the outpost ER for Children’s (which is great- but it’s not a true inpatient facility) or transfer to the main campus.  Once her O2 requirements started increasing, I opted for the transfer since I figured she’d be there for a few days.  Her pediatrician is at that campus, and I really like having them around because they have direct say in her care.  Besides, the accommodations, although further from home, are a little more homey. 

We didn’t end up getting there until after 5 (thanks to a terrible wreck on the highway) and she settled in for the night.  They actually got her O2 down a little overnight and I was feeling better about things.  In all the hullaballoo, they lost her IV first thing the next morning, so she had to be poked again, which, of course, was awful.  That afternoon they did another blood draw to check her levels and something (I have no idea what at this point) was pretty off, so they wanted another that night.  The nurse tried to pull it from her IV (the IV that was less than 12 hours old) and blew it.  Again.  Long, horror, story short, she screamed her little lights out for a LONG time that night.  They finally got her back to her room and put her on high flow oxygen, and things started going downhill.  Quickly.

Thankfully Respiratory was there setting up the new oxygen system so he was watching the whole thing go down.  She went down so quickly that we thought something was wrong with the oxygen tank.  It was finally decided that they’d call the Rapid Response Team (think 911 within the hospital) and a team from the PICU was rushed up to evaluate her.  Once they got here (a team of about 9) she evened out some and her O2 was teetering on the edge of needing to go to the PICU.  We decided that she could stay on the floor and try to get some sleep instead of going downstairs.  Right as they were getting ready to leave, Piper started dropping again.  So, our decision was made for us and we headed to the PICU.

PICU digs- and death-warmed-over Piper…

We stayed there for a week.

A solid week.

The Mask- and one of the first times she was willing to sit up in about four days.  Didn’t last long, but it was still good to see!

She ended up being pretty heavily sedated because she was so terrified of everyone touching her.  She would burst into fits when someone even came near her with a stethoscope.  It was entirely heart wrenching.  The next morning she was given a PICC line, put on CPAP, and given an NG tube since she wasn’t allowed to eat with the CPAP.  She was also started on a stronger antibiotic.  She slept for almost 36 hours straight.  She had chest xrays at least once a day checking out the pneumonia.  On Saturday they decided that she wasn’t making any ground with the CPAP and decided to switch her to BiPAP.  She stayed on that through Wednesday.  They also started a second broad-spectrum antibiotic, which actually ended up helping.  Thursday, after a few trials with nasal cannula, she was finally given the go-ahead to ditch that darn mask!  She even got to get her hair washed; I spent an hour and a half (no joke) detangling that horrific matted hair at the back of her head from the mask (note: if your child is ever on CPAP or BiPAP for an extended period of time, always comb their hair when you can!  GOOD GRIEF!)

Yeah- everything that’s NOT combed is a giant knot.  A GIANT knot.

First cannula trial to high flow oxygen- it was SO GREAT to see those little eyeballs again!

Feeling good enough to sit!  (…and, of course, wave at everyone walking through the halls; we had every single employee of the PICU walk by, just to tell her “hi”.  That’s my girl.)

While we were there, she had her NG tube replaced I-don’t-know-how-many times, had close to 15 xrays, an EKG for funny heart rhythms, a dozen blood tests…  Looking back now, she was one sick kid.  Those first few days on the CPAP and BiPAP they had to keep upping her pressures.  I heard several times that if they couldn’t sustain her, they were getting close to the threshold of intubation. 

Child Life brought her a puzzle (amongst tons of other things!)- she loved it!  You could tell she was doing better when she decided she’d sit up for longer than a few seconds at a time!

First smile in over a week!  How great it was!

First meal in the PICU- she only ate some of the macaroni, but we took it!  She was pretty pleased, too!

You know how, when you’re in the midst of something, you just roll with the punches and take one thing at a time?  And then when it’s done, you can’t believe what happened?  That’s where I’m sitting right now.  Tomorrow is two weeks since we were admitted and we’re still here.  She’s officially off the oxygen when she’s awake, but she can’t seem to keep her sats up when she sleeps.  And since we were inpatient for so many days after her tonsillectomy last month, we know that this isn’t normal for her.  We’re not really sure what to do with her at this point; we could go home on O2 (which I’d really hate to do because I have no idea how I’d get her to keep it on…) but we’ve yet to figure out how far she COULD drop if she took the cannula off and we didn’t notice (insurance in CO, despite our high altitude, doesn’t like to provide an oximeter- nice, right?)  I’m hoping (more like praying) that she’ll snap out of it quickly and just not need it any more so I don’t have to decide what to do.

It’s easier up here on the floor because Addy can actually come visit (you have to be 2 to get into the PICU.)  It’s quieter (and darker!) than the PICU, but she’s still on isolation because she may have had something that was contagious (I get it- I really do- but it still stinks…) so all the providers that come in have to gown-up and wear masks and gloves when they come in.  She can’t leave the room at all, and we’re all starting to get rather stir crazy. 

Needless to say, this is not how I envisioned the month of September going.  Feels like I can’t remember a time when she was really well; she never really got over the T&A before this all hit (which is one piece that everyone thinks contributed to the severity of it) and I’m ready to have our little girl back- in full force!

Anyone live at sea level who’d like a visitor for a few weeks?  Piper and I could use a little vacation, and maybe the lack of elevation would do the trick!