Hospital Living…

Deb here.  I’m here for my parent shift and to hang out with ‘The Littles’ for the day.

When I arrived earlier today to relieve Glen, he had her laughing and smiling; all great things to see and recognize the progress that Ella is making.

Let me first THANK all of the nurses, doctors and respiratory & physical therapists from both Kaiser Oakland and here at UCSF.  Without modern medicine and these teams of people, Ella wouldn’t be doing as well as she is.

Most importantly we must give credit to Ella.  This  smart and stubborn  little 7 year old’s body is healing as it should.  The 3 month coma that took its toll on all of us, was just the right amount of time Ella needed to heal.  Her healing is long from being over, but she is finally awake and making real signs of progress.

Sitting here at UCSF, I was reading through Alycia’s notes from the Parent/Doctor meeting a few days ago…  I wanted to share these thoughts with those of you that are following Ella’s progress.

Here are a few areas of Ella’s recovery that were discussed:  “She has “aquired” brain injury (due to the brain tumor); her strength & endurance are big challenges; we are hopeful she will be able to walk with assistance; we’re at the beginning of process of recovery; she may have long term deficits that may be signficant, but we work towards being independent & successful as possible.”

I know that we are on a very bumpy long road of recovery, and no one knows where this road will lead.  We must be patient, and try to take one day at a time.  I cannot live in denial and think that the Ella we knew months ago will be the same Ella that will be discharged from the hospital months from now.  I know that is not the case.   Ella is changed, and so are all of us.

What I can hope for,  is that Ella continues to progress in the right direction.  That she continues to stay healthy, and gets stronger each and every day.  And if after years of physical therapy & speech therapy, she still needs additional help; we are here for her, to love her, guide her and help her with whatever obstacles she chooses to challenge.

Glen & I had a recent conversation and spoke of Stephen Hawking, and recognize how much he accomplished in his life living with his paralysis.

Ella was a special kiddo even before her diagnosis, and this life changing event is making her even stronger and more unique.  She is the most caring, strong-willed, funny and beautiful child I have ever known.  The best part is that we knew this & appreciated her even before her diagnosis.  We (both sets of parents) would go through Ella withdrawls, when we had to go more than a few days without seeing her.  These past few months have been filled with hope and agony.

Today with Ella:  She is learning to talk again,  Her trach is capped, which is directing the air up her vocal chords and out her mouth.  She is making sounds, and slurred words – which if you listening closely, you can understand, or ask questions to have her clarify.  The best part is she is breathing on her own, through her nose & mouth.  If all goes well, the trach will be removed maybe this week.

The most difficult part of the day is watching Ella get upset.  She cries & breathes heavy, most likely because she is embarrassed and/or uncomfortable with feeling helpless… We asked her if she was ready for her bath, she said yes, so we started with the ‘sponge bath’, which Ella cried for the majority of it – no matter how I sweet talked her, or caressed her face or arm, she was clearly upset.  After ‘bath-time’ was done, I asked Ella why she got so upset, she started with slurred speech & then I asked her “Oh, You want to take a bath in your bathtub at home, huh?”  A big nod yes.

In summary, Ella is making HUGE Progress each day.  I am amazed at how much has changed since I spent time with her last week.  Just please understand, from where we are sitting, it’s not all sunshine and rainbows.  This hospital living, and everything that comes with it, has been our world for almost 4 months, and will be for atleast the next 2 months.

We consistently through each day remind Ella that her body is healing, doing what it needs to do to be well.  And that she will come home soon, and reassure her she has no reason to be scared that one of us is always right by her side (literally, a parent is on duty 24 hours a day).  And of course remind her how brave she is, and how proud of her we all are.  And that there are so many people out there that she doesn’t even know, that care about her.  We all just want her body to heal and become stronger so she can return home.  Biology is amazing, isn’t it?

Thank you to everyone for your continued love and support.

Ella is worth it!