Wednesday, August 31, 2011

Sigh

(Photo taken Wednesday morning, August 31)

Well, I have some praises and some sighs from today. 

Selah, immediately after being extubated, August 31, 2011.

Praises:  Selah is extubated and breathing well!!!  Hallelujah!  Selah's fever subsided (temp stayed at 99 or below all day) and she didn't spike any more temps.  Her bleeding in the skull has slowed tremendously, and she is really doing well overall.  She rested well this afternoon and seems to be comfortable.  What a joy it is to hear Selah's sweet voice and see her moving in the right direction so quickly.  All glory to our Jehovah Rapha. 

(That black thing on the right.  Well, that's a bag of Selah's hair!  Photo was taken this morning, August 31, before Selah was extubated.  I'm putting this photo in the praises section because it's a praise that we have a baggie full of Selah's beautiful curls!  We haven't seen Selah's skull yet (it's wrapped), but I'm so grateful they saved Selah's trademark...her head full of corkscrew curls!)

Sighs:  We had some "errors" with Selah's nurse today.  Yes, this was the nurse I was singing praises about in this morning's report.  She removed Selah's central line without orders to do so.  Apparently, she misinterpreted the order.  The problem with this is that Selah's IV's go bad quickly (usually only lasting a day or two), and it's pretty much impossible to get a new one in.  (It took about 2 hours for the anesthesia team to get 2 IV's into Selah in the operating room, under anesthesia.)  The doctors and I discussed the need for Selah to have (and keep) a central line so that there would always be access in the event that an IV (or both IV's) go bad.  Well, the nurse had her central line removed today around Noon by mistake.  Sigh. 

Then, around 5PM, we discovered that her foot IV had gone bad at some point in the day, and no one had noticed it.  That's the IV that they were running continuous fluids through, which means that Selah's leg, from the knee down to the toes, was FILLED with fluid.  It was HORRIBLE.  (Still is, actually.)  It was a condition known as compartment syndrome, where fluid gets trapped within a "compartment" of the body, causing severe swelling with some severe risks, including permanent muscle, tissue, and/or nerve damage (and a risk of amputation).  Sigh.  Upon discovery, Selah's leg (from the knee down) felt like a plastic doll's leg.  It was cold and hard and lifeless.  It didn't even feel like a human leg at all.  And Selah's foot was completely purple and stiff, and they were unable to flex her foot at her ankle.  It was bad.  They wrapped her leg in warm compresses and gave her a dosage of Lasix to help drain some of the fluid, and they talked about the possibility of calling in a general surgeon if things didn't clear up.  By the saving hand of our mighty Jehovah Rapha, slowly but surely, Selah's leg and foot are healing.  Her foot is now pink and more pliable.  Her leg is still cooler to the touch and hard/filled with fluid, but it is better than it was before.  It will most likely take all night for the fluid and swelling to decrease.  Sigh.
It's really hard to see the level of swelling and understand how horrible it was to feel this cold, stiff, hard leg on my baby girl.  Even the doctor freaked out and ran out of the room to get help.  This photo was taken a few hours after the warm compresses and Lasix.


Selah's also been dealing with a lot of facial swelling that has increased throughout the day.  It started with her left eye, which began to swell after her CT scan this morning.  It actually swelled so much that it swelled completely closed.
Selah mid-afternoon, Wednesday, August 31.

Now Selah's only able to open her right eye, as her left eye is totally swollen closed.

Here's what Selah thinks about this whole ordeal.  (Notice she's sticking out her tongue.)

So, all in all, even with today's mishaps, things are good.  What matters most is that Selah is comfortable, breathing well, the bleeding in her skull is at a tolerable level, and she's stable.  All praises to our might Jehovah Rapha!

Some things to pray for:
  • That Selah's last IV (in her hand) would not go bad.  (She doesn't have any other IV's, and she doesn't have her central line, so this is it.)  If Selah's IV will hang in there until they can stop the IV fluids and the IV antibiotics, we should be OK.  The IV antibiotics can stop once they're able to pull the drains from Selah's skull, but we're not yet sure when they'll do that.  Maybe 2 more days.  The IV fluids can stop once Selah is drinking enough fluids to keep hydrated.  She hasn't drunk anything yet.  (She doesn't want anything and won't suck on anything.)
  • That Selah's swelling in her leg/foot will disappear and that she won't have any lasting damage to her muscles/nerves/tissues.
  • That Selah's swelling in her left eye would disappear, and for overall swelling to be relieved.
  • That Selah would continue to be comfortable.  So, so, so grateful for her comfort level today, and I pray she'll continue to be comfortable.
  • That Selah's shunt would continue to work well and that her brain ventricle and the placement of the shunt would all remain good.
  • That Selah will continue to move in the right direction toward healing and ultimately toward home...quickly. :-)
  • That Selah would remain fever-free and infection-free.
  • That Selah
  • That Selah would be able to go home quickly!
  • That our kids and us would have peace and strength through this trial.
  • That glory would be brought to our Father through His daughter, Princess Selah, and that we would be a light to all those we encounter, particularly shining light on darkness with those who may not yet know Him.
 






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