Monday, January 28, 2013

sickness update

It's been an emotional couple of days.  
The redheads are better, although still with a cough and the fevers come and go.

Mabel went into a sickness that was different than any other time.  She had a high fever and we were able to bring it down with tylenol and motrin but on top of the fever she was refusing to try and drink from her bottle.  It was fine.  I fed her by tube for 3 days and gave her supplemental pedialyte as well.  

The first day that she was sick she was so lethargic and limp it was scary.
And then on day two the crying started.  It was this pathetic, awful cry where she wouldn't even open her eyes.  In fact I'm not sure I saw them open for 24 hours straight.  It was exhausting and overwhelming.  I'm used to her crying like this but being sick on top of it was really hard.  

The home care nurse came Saturday and we got her on some meds that helped to calm her.  She slept all night extremely well.  I checked on her several times and couldn't believe how relaxed she looked and felt. Yesterday morning she smiled at me and took her morning bottle.  The rest of the day was alot of sleeping and crying and she refused anything by mouth after the first of the day.

Her feeding had slowed down orally anyway.  She is taking forever to drink a bottle and I can get much more nutrition in her through her g-tube at this point but drinking her bottle seems to bring her comfort and because it's one of the only things that I think she truly enjoys, I want her to keep the ability to drink it as long as she can.  I have been tormented over the last few days thinking that maybe she has stopped and that would just be the end of her eating orally.  That happens alot in children with neurological disorders and can sometimes be the first sign of a decline. I was thankful to see her drink her morning bottle without gagging yesterday and am hoping for the same today.
As with everything else, we'll just take it a day at a time.

I had an awful night of sleep.  Terrible dreams and ongoing thoughts that are not necessarily haunting but just unnecessary considering that day time has been scary enough.  The stress of this reality is so much harder when Mabel is sick, let alone when all of the kids are.

Nora is pitiful.  I'm worried about her and I want to give her my complete attention.  It's impossible and that not only makes me sad  but the guilt is over taking.

Braden is as needy as ever and although it's frustrating it is hard for me to not be able to tend to him like I typically do.  They'll be ok and I know that but it doesn't make it any easier.
I hate this for them.

There is so much that has been going through my mind the last few days and yet none of it seems at home when I write it here.  They are thoughts that are meant to be tucked inside, I suppose.  That makes it difficult for me because they are heavy and hard but I know that God is giving me great discernment with when and what to share about this life.  He always has guided me and I want to be sensitive to that.
Just know that I appreciate any prayers of strength and wisdom that you are praying for me and for Daniel.

It's sure to be a long week.  I am so thankful that I can depend on the Lord to see me through.  He doesn't do it in the ways that I once thought He might but He is present, nevertheless.


Jessica Kramasz said...

Praying for you and your precious family.

Elastagirl said...

Praying for you


Been sending prayers daily for strength & wellnes for u all. If there is anything else I can do please just say the word!