Night and Day

Well, after my post last night, I was looking forward to and praying for a good night's rest with few interruptions.

Silly me. It is a hospital, after all.

Lilly did sleep soundly from about 11pm-2am. So did I. Around 2am her O2 sats started to drop and the alarms started ringing. Didn't disturb her, but no way could I sleep through them. After a few minutes, her sats would go back up. (and I know how to turn off the annoying alarms, but the way the room was set up, it required climbing out of bed to reach the box.) After a bit, the nurse brought in some O2 blow-by and all was well again. Until around 3am, when the nurse came in to alert me to the possibility that our room--set up as a private room (our first private room at CHOP--very exciting...especially if you remember the snoring Amish mom from our stay in February) could very well be getting a roommate after all. Sure enough, by 4am they started rearranging furniture and bringing in another bed and a room partition and scooting Lilly's bed nearer to mine (and the hospital beds, when moved, insist on beeping like a semi truck backing up). So lots of commotion.

I know I mentioned last night that Lilly was ravenous before bed. So in the middle of the night, when she was awakened by all the ruckus, she decided she was hungry again and needed to eat *now*. She actually wanted more tuna! I declined on feeding her tuna at 4am, but given that Dr. Campbell really wants her to gain weight, I relented and let her have some fruity snacks (neater and less stinky). She was pleasant as could be, and when she heard we would be receiving a roommate, she commented randomly "maybe her name will be Lillian, too." (In hospital settings, she mostly gets called Lillian since that is her given name). Sure enough, our new roommate was another Lillian--only about 10 years older than our Lilly.

So, needless to say, we did not get much sleep between about 4-6 am (and from 2-6 am for me). Once shift change occurred at 7am, I was wide awake, sincve my body is used to a much earlier morning wake up time anyway.

Lilly, however, slept nicely until nearly 9am, and our roommate and her mom slept till nearly 11am since they had spent almost the entire nigth in the ER prior to admission. So we spent our first few hours trying to be very quiet for the roommate. Thankfully, we knew her name was Lillian, too, as the lab almost drew blood on the wrong patient until I made sure he had the right last name...

Lilly's mood was great, and her appetite was great, for the early part of our morning. Until we decided to get out of bed and go to the play room in order to be able to talk above a whisper. Once Lilly attempted to bear her own weight, either standing or sitting in a chair upright, she was in severe pain. Severely severe. Off of that pain chart...there are no cute faces to match the grimace she was making. Poor thing. So we added some valium to the mix of meds she is getting, and it seemed to help a little.

We spent some time this morning doing some amazing crafts (she directed and supervised while being held in Tom's lap and I did all the grunt work...) I should post a photo of "her" creation since the concept was pretty creative even though technically I did the cutting and gluing.

As for me, my wonderful man hung out with Lilly while I got out for a little jog and an excursion to find batteries for her Leapster game and Greek yogurt for my breakfasts. SO GOOD to get fresh air and moderate exercise.

Then it was lunchtime...pain still nagging, appetite not as fabulous as it had been. And then, sas I held her while she moaned about the pain (pain meds just taken, but not yet kicked in) she fell asleep. Deeply asleep. For about 3 hours. Guess she needed that rest, cause the rest of the day was a night and day difference in her pain level, her countenance, her energy, her mobility (almost totally normal now), and her eagerness to engage in fun activities.

The rest of the day we spent playing with toys we brought from home, watching some "Olivia" episodes I downloaded from iTunes (she first saw Olivia in the waiting room before surgery and really liked it...) and eating dinner. Appetite was back, praise God.

Because of her mongo nap, bedtime was on the late side tonight. I kept her up and we played with her toys until her next dose of pain meds so she wouldn't have to be awakened to take them.

We are thankful that Tom has a room at the Romald McDonald house tonight--they haven't had space the past few nights. Now he is walking distance away. Wonderful, wonderful charity. I hope to run the Philly marathon next fall as a fundraiser for the Philadelphia Ronald McDonald house--a blog post for another day, I suppose.

Dr. Campbell came in late in the afternoon to check in. The lab results from her tissue samples are, so far, not showing any bacteria. In all other regards, she is doing great. Tomorrow we'll do blood work and the tissue sample cultures should be final. We will also have a consult with Infectious Disease specialty and hopefully a consult with a dietician to give us some strategies for helping her gain weight. We are hopeful we any be discharged as early as Saturday...

Hoping so. SUre do miss my big kids. They are holding up well at home with Grammy and Pop Pop, praise God. One of the biggest downsides to all of these medical visits with Lilly is, for me, the feeling that I am missing out on their lives and neglecting them somehow. The upside is that they have developed new and wonderful self-sufficiencies in many ways, and are showing growth and maturity. Gotta' love that.

OK, enough words...time for sleep. More tomorrow.