We had fun with the children here today, although it turns out that 7 people in a hospital room is quite a lot…  Both Bliz and I predicted that Bubba would last 15 minutes max, but thanks to a big bag of Hershey’s Kisses, it was probably 45 minutes before it was time to go play outside!

Some of you may wonder what we do all day with Anna.  Well, we do a bunch of things, but most of her care is to do with her trach, and keeping her airway open.  For example, this morning Bliz and I were here, and I wanted to show Bliz where the kitchen is.  The kitchen’s about 25 feet from our room.  So, before we left on our journey to the kitchen, I suctioned Anna’s trach tube well to get all her lung secretions out of it.  So, we went to the kitchen, and I showed Bliz the fridge where we get our milk and juice.  We selected some chocolate milk, and returned.  A trip of maybe three minutes.  Well, in that time, Anna’s trach tube had virtually plugged up with secretions so she basically couldn’t breathe.

So when she’s awake and active, she’s always about three minutes from suffocation.  Now, when she’s sleeping, and sometimes when she’s awake, her lungs don’t produce much secretion, and we don’t have to suction her much at all – maybe once an hour or less.  But much of the day she can’t be left alone.  The nurses do a great job as far as they can, but they’ll only come in after the monitor alarms, sometimes a minute or two after the monitor alarms, and by that time she’s already been basically unable to breathe for some time.  If y’all could pray for this to improve, we would sure appreciate it!  But we always try to remember that the trach isn’t the main problem – it’s the fact that she can’t swallow, gag and cough well that is the root problem – otherwise she wouldn’t need the trach.

Anna’s storming seems to have STOPPED!  PRAISE GOD!  She is much calmer now when awake, and seems to be doing better and better at coping with stimulation.  PLEASE CONTINUE TO PRAY for:  Sleep – she still does well to sleep more than 4 hours a night; her heart rate, which has improved in the last couple days, but is still 140+ while she’s awake; her eyes, which are continuing to move more, and just look like they are starting to be able to see things; and her stiffness, she’s still very stiff indeed, it really hasn’t changed.

Our wonderful OT Susan showed us a trick to get her to sleep – she would take Anna’s fists and rub them together very slowly.  If that didn’t work, she would take one fist and rub it against her nose and lips.  The last two days I’ve done that when Anna’s getting sleepy, and sure enough each time, within about a minute she’s been fast asleep!

I am very conscious that we have a ring-side seat on an amazing miracle.  ALL praise to God for ALL He is doing!!

God bless,

Richard