She’s Home

weak as a kitten, still has her nasal cannula, but home…..so grateful

Sunday Morning

Bella had a good night and is now at 5 liters and 40% oxygen. The next step is to go to a normal nasal cannula and down to 4 liters. :)

Keep this up and Bella will be home in no time.

Bella got a bath this morning and complained the whole time.  Once it was done we had this as the result.  One very happy Bella.

Bella also has been using FaceTime with Sammi and Joy.  They sang songs and laughed.  Really good to see her feeling better.

A good Saturday

Bella started out Saturday in the PICU on third floor at 8 liters of oxygen at 60%, and ended the day on the 7th floor at the PCU in private room at 6 liters of oxygen at 40%. 

This is great as we are no longer in the ICU and we are weaning down the oxygen. 

Pulmonary Hypertension

Wonder of wonders, the cardiologists were able to read Ms. I'm Not Gonna Sit Still's ECHO.  Surprise! Our friend pulmonary hypertension is back. Why not with the way this stay is going?  Well, at least we know.  If she doesn't turn around, they can add INO (nitric) to every thing else, but you have to be in the ICU to be on Nitric, so here's praying for a good night and that we won't have to go there.

Not where we wanted to be

Well, today finds us in the ICU.  They just weren't comfortable with her on 8 liters at 100% and stating in the upper 80s when she was asleep.  They didn't want to have to do an emergency intubation on the PCU floor.  They felt she would be safer in ICU.

ICU is obviously not my favorite place to be, nor is it Bell's.  She is on high alert here.  Every sound, every person freaks her out.  She had another EKG and they attempted an ECHO.  I'm not expecting much from the ECHO.  She was fighting against them so much. 

My Mom came to visit which was nice.  It is nice to not be alone here.  To not be alone with my thoughts and memories.

The kid next to us is where Bell was five years ago.  Vent, nitric, he's not in a good place.  Oh, this place in full of memories.

Meanwhile, my baby girl is doing OK all things considered.  I'm hoping we'll be out of here by tomorrow.  Her left lung is involved now, and her eyes look dazed and sick, but I'm thinking she really just needs lots of time and rest to beat this.  Fight on brave girl, fight on.

They tell me today was Thursday. (It all runs together up here)

Bella's day by the numbers.

She started the day at 8 liters and 80%.

She ended the day at 8 liters and 60%.

She had a EKG to see if there is anything underlying all of these Brady's and irregular heartbeats.

She was deep suctioned twice. That is just torture.

Her feeds were resumed.

We had two visitors - both of my sisters in the Houston area came to visit (Thank you!)

But more importantly, she is coming back.  We got my phone out and she smiled for a picture!

I was kissing her neck and she giggled.  How giddy I am that she is returning!

So many people are praying and I am so thankful.  Your prayers are appreciated and truly felt!

We have a diagnosis

Viral panel is back.  We have human metapneumonvirus, second only to RSV in terribleness for someone like Bell.  Attending reiterated how sick she is and how narrowly we missed ICU and intubation yesterday.  I believe that with a different Attending we would have been.  She agreed with my plans to take care of pneumonia at home, but said I did the right thing in bringing her in when we did because there was no way this one could have been treated at home, not human metapneumovirus. Today's goal is to see if we can do some oxygen weaning. 8 liters at 90% should be downstairs and intubated. So thank you for coming back my baby girl.  Fight on brave Bella!

It was the best of times, it was the worst of times

Today did not start off well.  No real sleep trying to keep that mask on her face and her stats up.  And then the worry! Oh goodness!  She just kept sleeping, laying there, hour after hour.  Breathing so hard, pulling and pulling.  But what really, really, scared me was she stopped fighting.  Attending, residents, fellows, nurses, the charge nurse, PCAs, and the RTs were all looking her over, examining, listening and nothing.  This was worse than bad stats to me.  Where was my baby?  Why was she giving up and giving in?  Everyone noticed it.  Everyone was very serious. A rapid response team was called in to transport us to PCU. They put her on bi-pap. They start talking about the limits of PCU and about the PICU.  And she lay there, breathing and pulling and alarming.  they finally give up on the bi-pap with its 11 liters of flow and went back to the high flow nasal cannula.  And then at 5 o'clock, I don't know if it was the extra fluids, the steroids, the breathing treatment, the visitors (Thank you!), the meds, or what, but my Bella looked at me and there in her eyes, she was back.  Welcome back sweetheart!  How I missed you!

Her two attendings and her fellow have stopped by tonight.  They can see the difference as I can.  everyone is so relieved.  Sighs of relief.  We were headed to ICU and intubation.  Could I have done that to her?  I'm not ready to say good-bye yet, but would she ever forgive me for incubating her again?  Would it be fair to her?  End of life decisions are hard to make.

We are not out of the woods yet.  She is still on 8 liters of oxygen, but my baby's eyes are back and that is all that matters to me right now!!

Poor Daddy came to see us today.  He was bringing me more clothes and food.  He and Brother arrived just as the team was assessing Bella and making plans to get her downstairs pronto!  As I hold Bella and they searched for yet more access, a nurse tells me, "Your husband is here and the doctor is talking to him."  Poor Jas!  We got to the PCU and things settled down a bit to find out that they have changed their visitors policy - no siblings under 12.  So Daddy can only stay a little bit.  Just enough to get even more worried about his baby girl.

So grateful for today's miracle!  Fight on, baby girl.  Fight on!

Pneumonia breathing

It all started with the viral junk going around.  It was cold here and everyone had leaky noses- her family, her class.  I debated with myself every day if it was too cold outside to go to school.  If her classmates were too viral-y.  I kept her home two days of the week, but she still caught it.  So she rested and watched Daniel Tiger, her fav.  But she didn't get better.  I figured we had gone into pneumonia again.  Her stats started dropping.  She hit the magic 89 and I got my nasal cannula out.  The next day I headed to the little ER twenty minutes away.  After a chest x-ray, he agreed with my diagnosis.  I insisted I could handle this at home.  He gave me a script and we went home.  Yeah!! I even texted my friend two hour ER visit- a new record!!  The rest of the weekend was terrible.  Hardly ever leaving her room, turning up the oxygen higher and higher.  Watching her work so hard to breathe, just inhale and exhale.  Watching the monitor all night.  Mid 80s staring at me in spite of all of my tricks.  Tuesday morning Jason and I decided we couldn't wait any longer and took her downtown.  I packed a bag and said my goodbyes to the girls. We all knew what this meant.  Made it to the ER in an hour and a half.  Straight into triage, straight into trauma room B, no discussion just admittance.  Up to the pulmonary floor.  Twice they have threatened to kick us up to PCU. Meanwhile she breathes.  Through her mouth, pulling every breathe.  She fights and panics whenever anyone comes near.  High flow on eight liters?  Epic fail. Back to the face mask on six liters, which means no sleep for Mama because she won't keep it on unless she's seriously asleep.  Chest x-ray shows pneumonia is much worse.  Deep Suctioning- torture!  Hang in there my brave fighter!! Keep fighting!

They call this see-saw breathing, and it's not good.

Bella’s Week

GI was on Monday.  Always interesting  - it’s usually a four hour deal.  I always have Brother who really isn’t interested in sitting quietly anymore.  Fun times!  But the good news is Dr. Barlow was pleased that she is starting to eat some by mouth.   I can skip her milk feeding if she will eat!!  Since she still won’t drink, I still have to do the water infusion, but we are coming along!!  (That juice box?  A fun toy.  Oh well)  She asked about when she would get a bloated, hard tummy and would hold her stool and I told her we hadn’t had any problems of late.  Darn if I didn’t jinx myself.  Oh well!

Therapy

Learning to use the walker

An achievement – she learned to slide by herself!

We took the walker to school and I tried to get a picture but my phone was being crazy.  I got this one second video instead.

Bella has had a GI bug this week.  She was resting on the couch and Joy decided to bring her a “couch picnic.” (Daniel Tiger reference)  I thought it was very sweet.

Posted this on Facebook about Bella’s turn with the GI bug:

**Warning - might be somewhat graphic to some people***
I LOVE g-tubes!! I have four down with the stomach bug. That's a lot of cleaning. Love that when I hear those particular sounds coming from my tubie girl that I can grab her extension and drain her tummy quickly. Ahh, beautiful stomach contents sitting safely in a bowl and not all over the couch/rug/floor/me like her siblings keep doing.
And pedialyte goes into the body so easily through a tube. Unlike a little someone I know who keeps turning his nose up at it!
Seriously, why doesn't everyone have a g-tube??!! Motherhood made easy!

That jinx I mentioned earlier??  Well, with the GI bug, I didn’t want to give Bella her laxatives (she is on some serious does).  I figured she didn’t need them.  She was throwing up, right?  Well, she went four days without stooling and turned back into my ER worthy girl.  She was screaming, her eyes looked like a woman possessed, she was struggling so hard her respiratory status was compromised.  So grateful I know how to handle it all here!  Poor baby!