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

Thursday, April 23, 2009

Another Day

Today the attending wanted Bella to have another vec holiday.  Just enough to see how long it would take her to start twitching.  So far we are at 2 hours.  It’s supposed to have a half life of one hour, but it depends on how long you have been on it. 

But consequently, she is taking longer to recover from her breathing treatments and bag and suction. 

Her central line won’t pull back.  What that means is that it’s not totally blocked – they can flush it (put stuff in), but nothing will come back out.  So they have given her some medicine to try and break down the junk that is accumulating at the end of the catheter.  It’s like a door – the door will open, but when they try to pull back, the door closes.  They have to try and get this line working.

Yesterday the social worker and then later the Clinical Care Nurse came and spoke to me about the trach.  I now have my trach book.  I have lots of material to read.  I have found others online that are living with this every day.  My hope is that I can get used to it.  We’ll just have to accept our new reality and move forward.  Bella will really need to be protected from germs.  Pretty much she will live in the living room.  There will be no church and very few, if any, social outtings.  But if it gives her body the support it needs so it can grow and she can heal, then good.  Her quality of life will be better at home than here.  She is receiving excellent care, but everyone deserves to go home and live with those who love you.

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And as a memory for myself – this is my chair.  Where I spend all of my day:

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9 comments:

Anonymous said...

Hello sweet baby girl. Keep hanging in there. Rest and let your body grow strong. We will be here for you waiting, praying and loving. Same for you too Turpin Family.

Michelle said...

I hope all works out and you get to take her home! We are praying for you and Bella!

My name is Sarah said...

You will be a pro at trach care before you know it. Although I am going to be honest and say it was a little intimidating the first few nights. After a short while it became as routine as diaper changing. Bella looks peaceful today. I hope they can get that central line functioning properly again. We're praying for better days soon.

Heather said...

Just keep telling yourself that it's not forever ... Bella will find her way, in her own time and there will be a lifetime of church and outings.Although we are still in the midst of the germ free zone and dividing up as a family for most things,we see a glimmer at the end of the tunnel and you will too.You will acquire fabulous skills of multitasking and the big girls will become much needed extra hands.We continue to pray for that darn line and better days and peaceful hearts for all that lies ahead.Keep getting strong Miss Bella ... home awaits.

Heather said...

Oh, by the way ... I have a chair that looks EXACTLY like that in our home away from home.These hospitals must shop at the same home decor stores!!!

Lacey said...

Hi there, I found you from Sarah's blog. This all sounds so familiar, it makes my heart break for you. While we were able to avoid a trach, we spent 4 months on the vent. For lungs and heart. He is 3 now and still on O's 24/7. If he comes off his pressures rise and his sats drop. All the PICU talk brings back a lot of memories. I'm always here to talk, and I would like to offer you a blankie from our non profit we started called Jaxsons blankies for babes, my son is Jaxson. We make blankies for kids with life threatening illness's. I would love to make one for Bella. jaxsonsblankiesforbabes.blogspot.com is the blog, or email me at laceyrugg@hotmail.com and let me know if you would like one. Hugs from Lacey and Jax

maniamam said...

There are so many people out there who are thinking of you and little Bella. You know that you can do anything... you are supermom and that is exactly what Bella needs. I love the picture of your comfy chair. We're praying for you all. My nephew and his baby are in St. Lewis awaitng a lung transplant. Have a good night.
Krystal

asiaelizabeth said...

Wow they should so get you something comfy like a recliner!

Dolores said...

I'm so glad you have a way to journal all of this. I know journaling helps me to keep the days straight when I'm in the hospital with one of the kids. Thanks for keeping us up to date, too. I'm in and out but always thinking of you and Bella and the rest of your family.