Slow Steady Road to Recovery

There has not been very much to report today.  We continue to be grateful for God's healing hand, for his being the God who Hears, and for sustaining us all--Lilly in her post op recovery, Tom and me as we care for her and miss our big kids at home, and Jared, Anna, and Nana back at home.  Please keep my mom in your prayers as she fights symptoms of the same virus that took Anna out of school for almost a week and kept Jared home from school Monday and Tuesday of this week.

Lilly and I had a fairly decent night's sleep--there are many noises and lights in the PICU that make sleeping difficult, and her pain levels also made sleep somewhat fitful when she was nearing time for her next "rescue" dose of morphine.  I was able to stay bedside on a little chair that folded flat into a small cot so I was close by which gave her comfort.  She was so sweet--at one point as I was checking on her whimpering, she looked at me and said "go night night, mom."  Our roommate--a little guy about 18 months old--was having a very difficult time sleeping so his crying and his parents' efforts to care for him also made it tough for us to sleep.  The little curtain between us offers only visual privacy, but no soundproofing.  I probably slept for two or three 60-90 minute blocks between 10pm and 6am.  By 6am, it was clear that the PICU was awakening for the morning--lights turning on, residents and attendings making rounds, nurses checking vitals, etc. 

Lilly has spent today in and out of sleep, showing little interest in food or any other activities (even TV or books).  Thankfully she is drinking lots of fluids, and we are hopeful that she will get a little bit of an appetitie when she feels less sleepy.  She has had wonderful nurses who have been great about staying ahead of her pain curve by dosing her with "rescue" doses of morphine every 3 hours, supplementing a steady dose she is getting from a pump via IV.  We are hoping that soon she will be able to manage pain via analgesics rather than sedatives so that she is more alert and more interested in eating and moving.  It is hard to see her in so much pain and not be able to take it from her. 

Forward steps today included removal of her arterial line in her right hand and removal of her foley catheter.  Two tubes down, several to go.  She still has an oxygen line in her nose, a dual IV in her left hand, 3 drains from her back to drain fluids and blood from the surgical site, a blood pressure cuff on her ankle, and a pulse ox monitor on her hand, so there are plenty of tubes and wires still criss-crossing her little body and throughout her bed. But each removal is a little victory in this road of recovery.

She gave a slight smile--the only emotion other than pain she has shown all day--when she received a few e-cards from friends back in Florida--thanks Amanda, Sarah, and Nicole!  We have propped those notes up in her bed so she can see them when she opens her eyes. 

The attending physicians are planning to move her to a regular room either later today or tomorrow morning, depending on how she's doing and where beds might open up.  CHOP is absolutely full--so many sick little ones. 

Dr. Campbell made his rounds earlier today and said that, at about the 24 hour mark, she is free to try to sit up and even stand and walk if she feels up to it.  That would be later this afternoon/evening.  Based on what we are seeing today, it may be another day or so before she is inclined to get out of bed--even though she claims she wants to "get up," even the slightest movements of her torso seem to cause her great amounts of pain. Not to mention that it might be difficult to do so with many tubes and drains hanging from her body.  Dr. Campbell told us that muscle spasms are very common in VEPTR kids because the muscles are being stretched and recruited in new ways now.  Not to mention that her bones and incisions are sore.  So it will be a balance of encouraging her to move despite the pain, and allowing her to rest and treating the pain as needed.

I suspect that once she is able to manage pain without the sleepiness of the morphine, she'll start feeling more like herself and more inclined to eat and try moving. 

Please continue to pray for her pain tolerance and pain levels, for her lungs to be protected from fluids, for her to begin to have an appetite again, for her digestive tract (likely slowed down due to the meds) to kick back in once she starts eating, and for her peace of mind.  She is clearly agitated that we are here and wants to be done with this place. 

We are thankful for the great staff and resources here.  I am currently sitting at a computer in a family library where there are also some sleeping rooms, showers, and laundry facilities available for in-patient families.  Earlier today, when Tom joined us after spending the night at the RMcD House, I slipped away for a short nap, a fast run on a treadmill, and a warm shower back at the house.  I also picked up some of our favorite breakfast and snack items from the local "Fresh Grocer" to have on hand here at the hospital.

All for now.  Thanks for reading.