Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Wednesday, May 13, 2009

Wednesday

Bella is more comfortable this morning.  We do have soothing music playing and she has been resting.

The pulmonologists came and talked to me.  We are all talking about the process of heading home.  What an amazing place to be in!  How different than two weeks ago today when I was looking at caskets.  Both the Pulmonologist and the Critical Care Attendings feel that now Bella has had her trach, we are dealing with a new kid.  The Bella of the past is not the Bella of today.  One doctor said that because she was having to work so hard (a baseline of retractions and a Respiration rate of 60-70 when well) was causing a great deal of negative pressure in her lungs.  This is why the capillaries were leaking so much fluid into her lungs.  So with our new respiration rate of 30 and the ventilator, along with time for growth and strengthening of the muscles, the leaking shouldn’t happen as much.  We should be able to be off diuretics in a few months.  And they should be able to follow us clinically with visits further spread out (like once a month versus once a week with cardiology).  I must admit that I want to believe that.  I really do.  My experience doesn’t support that.  But I read this morning about learning from the wisdom of others.  I will try to have hope.  They did tell me that I will know, as her mother, even better than an x-ray, when she is not doing well.  OK.  We move forward into this strange new world with faith and hope.

Bella continues to be low on her potassium.  So they are having to give her a lot of extra potassium.  They feel the answer to that is to remove one of her diuretics (she’s on 3).  She was quite positive yesterday, but a normal person is positive.  And there was no x-ray this morning because of the fresh trach precautions.  I am concerned, and I have voiced it, but I am trying to have faith in this new plan of attack.  Oh, I hope they are right!

The difference a few hours can make………

Bella got very cold.  Her skin was dusty and marbled.  Her pulse ox was good, but her body was not matching the monitor.  Then she went trachy, 180s.   Lots of people were in our room.  Mama was extremely nervous.  When I watch all of those alarms going off, I can’t help but wonder if this is it.

She spiked a fever in the middle of all of this (102.1).   Her chest x-ray shows some fluffy lungs – they are going to re-think their reduction of the diuretics (ugh!).  Cultures have been drawn and two heavy duty antibiotics are being started.may 13 002

We have been here in the ICU for a month.  Jason and I were holding our breaths that she wouldn’t get sick again.  We came down here with aspirate pneumonia.  We were on a course of antibiotics.  We had one day of no antibiotics before she got some bacterial thing.  The antibiotics for that finished at the end of last week.  We were pleasantly surprised that she didn’t pick up something else over the weekend.  She was healthy enough for her surgeries, and now here we are again.

Sweet girl.  I wish for you a moment free from pain and sickness.

may 13 001

8 comments:

Lacey said...

Oh its such a vicious cycle being in the PICU. You catch everything. I eventually put a sign on his door reminding everyone to wash their hands. Hopefully she gets over this quick so you can get her home. Thats the best place to be.

Kathie said...

What a difficult cycle this is - it is so frustrating that she looks good one minute and is coding the next. I sure hope that they are able to get some control over it. Love ya lots, Kathie

jturpin said...

Kathie,

Coding is a very bad thing and luckily Bella has never Coded!
We dont ever want that!

We are hopeful we can get away from the constant bugs she catches and makes her sick.

Cammie Heflin said...

I am so praying that you get her better and home very soon! I know how hard it is to have our little ones in the hospital with uncertainties!

Kristin said...

When I caught up on the last two days of your blog just now, I couldn't help but think how hard it must be to be in the hospital and not know how much longer she'll be there. I'm counting down weeks to my due date now, and I can only imagine how nice it would be for you to have a countdown of your own to when you get to bring Bella home (for an extended visit!). Lots of love!!!

Heather said...

I almost made an audible gasp as I continued reading.One moment smiling and hearing great things and then the news of another set back.It is a roller coaster that I wish no parent to ride and your ride has been such a turbulent one.Today it dawned on me,a little boyfriend Zoey had in the NICU his name is Kingston and he is blessed with the extra something,something also.His story is one almost identical as Bellas and today,although still trached he is doing beautifully and has a radiant joyful smile ... after 7 months in the NICU.A long road for sure but one filled with HOPE and FAITH.Keeping holding tight to those things and Miss Bella's hand she wil continue to be your guide.

Sutherland Photography said...

I am so glad that she was well enough to get her needed surgeries! It really is one step forward, two steps back... but we are heading in the right direction! My in-laws are in town, so I am catching up on a few days, but we are fervently praying for that sweet baby everyday, and your entire family as well! We sure love you! Keep the course Bella! It was so nice to see your face!

maniamam said...

It is so nice to see her lovely little face. What a difficult day for you all. I like the idea of a count down for you too. Let's stick with the three week plan....Hugs, prayers and love.
Krystal