Life as a Leach

Abby had a better day today!  Her emotions were under control and there weren't nearly as many tears today!  She worked super hard today and pushed through the pain.  She did great with pt and even climbed a flight of stairs like a rock star!!  I was shocked at how well she did.  The PT actually signed off on her (not that she's fine, but that she is safe and we are trained to take care of her at home.   We still aren't sure when we will go home.  That's up to Dr. C., who is still in charge even when he is away.  Love that about him!! We did a few crafts today to pass the time and keep her sitting up in her chair.  This was one of them! Lots of things were better today! * Abby climbed the stairs and was cleared from pt. * Her attitude was much more positive today!  The pain is excruciating and she was definitely hurting, but her attitude about working hard was much better. * Certain post-op tummy issues were causing problems.  That ...

So much for no puking.  Out of the blue with no warning, Abby got sick tonight after being asleep for over an hour.  She was on her side and puked all over her picc line.   Not good.   So in addition to washing her up, cleaning her hair, changing her clothes, and remaking the bed, (all while standing and being in pain!) the poor girl had to have her picc line dressing changed (with lots of tape removal) at 11:30 pm.  No fun. If you read my last post, you know she was already teetering.  This just pushed her over the edge.  I held her after the nurses left and just let her cry.  Thankfully, she's asleep again now (still needing oxygen) and hopefully the rest of the night will be calmer.

 After a good night's sleep at RMH, Caleb and I walked back to the hospital to find that Abby had already had walked down to the playroom with pt!  Then ot came to  work on some functional skills like getting dressed.   Caleb and Matt went to the Philadelphia Zoo today.  They had a great time, but I wish we all could have been there.    They brought Abby back a baby for Mia (her beloved red panda)!  She is in love!  The baby's name is Maya. We did some painting with water colors today.  Abby painted a tree.  This is the final product. This evening after they left and we ate dinner, I encouraged Abby to take another walk with me.  She is supposed to walk at least twice a day.  She pitched a humongous fit and screamed at me all down the hallway so loudly that the nurses came out to see what the ruckus was about!  I tried many times to explain why we needed to walk, but it didn't matter.  When we finally made it to ...

Since my sweet boy is in town, Matt stayed with Abby today so that we could hang out together.  We went to see Angry Birds at a local theater we walked to.   It was cute, but not 3D worthy (we saw it in 3D because the time of that showing worked best for us).   Now we are back to RMH for the night so that I can hopefully get a good night's sleep!   This morning, in typical Abby fashion, she not only walked, but walked the complete length of the hallway!  She needs lots of support, but she is doing it!! What a determined little girl.   What is better about today: * The drains and pain catheter came out, so she doesn't have anything tying her down! * She is starting to improve her mobility.  It's still pretty limited, but she is getting there! * she is continuing to eat like a champ! * Because she isn't tied down now, we can go off the floor for short amounts of time. Prayer Requests: * continued pain management * increased mobility

As you read in my quick post, Abby was cleared for pt.  We haven't heard Dr. Campbell's official word about the sturdiness of the unique anchor he created, but at least she can start moving.   The pt came at 11 and got Abby out of bed.  She sat on the edge of the bed, stood holding on to the bed, and sat in her wheelchair.  OT came later and did some similar work with her.  She will get daily OT and PT for as long as she is here, but we will also work with her.  She is in a ton of pain from any kind of movement--ANY.  Standing hurts a lot in her hips, so she could only do it with a lot of support for about a minute.  She is also having trouble sitting up straight and holding her head up.  The left side seems to hurt more, so she is leaning on her right side.  We are trying to get her to sit up straighter, but it's hard for her. Walking or lifting her legs higher than 3 inches off the ground is a no-go for now. It just isn't happening. ...

We are cleared!  Praise God!  They said the CT looks ok.  Pt is coming in a few minutes and ortho is changing the dressings now because she has a lot of drainage (enough to soak her bed).  We premedicated her in hopes to minimize pain. Thank you for praying!!  

 Abby is settled into the PICU and sleeping pretty fitfully, which is to be expected.  She wakes up about every 10 minutes in need of another push of her PCA pump!  They don't have her on continuous meds right now because she was drugged up more than usual in the OR, so we will see how it goes.  The Fellow has been great about deferring to me and asking lots of questions about her history.  She is currently on oxygen and has a trumpet in her nose to clear her airway (her tongue still flops back and obstructs it at times), which she hates!  The only sentence she has said is, "There's something in my nose!!"  The plan is to keep it in until she wakes up more.  If she needs more support than that, she will go on Cpap.  We have done that before, so it's no big deal in the grand scheme of things! The poor girl about lost it when they rolled her to look at her back.  :(. It's safe to say that she is pretty majorly hurting! She's a bit famous i...