Doing so much better

so very grateful!!!

 

Bella’s Week and Easter Weekend

The week was the same as last week – she was cute and wonderful, playing and worrying her Mama.  She discovered this box and we tried to get her to bear weight on her leg and show her how to kick.

I kept having conversations with myself about her health.  I hated how hard she was breathing.  I hated the retractions.  I hated all the sleeping.  I hated all the oxygen usage.  But I didn’t want to call the doctor.  Everyone has crazy allergies this time of year.  We were doing everything possible at home what more could they possibly do?  But in the very back of my head was this little voice that said if she has aspirated and her pulmonary hypertension kicks in and she dies because you didn’t want to spend some time in the hospital, how are you ever going to live with yourself?  Saturday we had a nurse that we don’t normally have.  Toward the end of her shift she asked me some questions.  She didn’t think Bell was doing very well and did I think she might have aspirated?  UGH!  To have my thoughts spoken by another was the final straw.  We decided we would head to a hospital and get a chest x-ray.  She told us we didn’t have to go to TCH.  We could go to a local hospital.  Ahh….my mind loved that idea.  We couldn’t be an automatic admit. I’ll take one chest x-ray to go please!  Great idea!  I’ll be able to tell the little voice in my head that she didn’t aspirate and I’ll be able to sleep again.  Yeah, and if not, at least we are doing something.

Well, it was a great idea except for the fact that we scare people – a lot.  We walked in with our vent and all of our equipment.  We bypass triage and go straight to a room.  They order the chest x-ray and then they about faint.

You will have to be transferred.  What?  May I see the x-ray?  I guess people don’t usually ask that.  I tell them it’s not that bad – I’ve seen much worse.  But she has infiltration in the right lung (pneumonia).  Ugh.  (Oh, and by the way, that’s the way her x-rays always look)

We go downtown.  We are automatically admitted with our presenting symptoms.  Long night – no sleep.

Bella in her prison.

She loves to sleep sideways.  Not sure what she’s going to do when she gets a little bigger.

 

The family came up to see us on Easter.  That was a hard day for me.

 

 

 

 

At TCH they watched her.  She stayed on oxygen (up to 5 liters when she was asleep).  She got lots of breathing treatments.  She got Lasix.  We had labs at both hospitals.  She had tracheal aspirates run.  We did an ECHO.  Endocrine doubled her thyroid med.  We did IV antibiotics.  We are doing inhaled antibiotics now at home.  And we are waiting to hear back from cardiology.  I convinced them to send us home before we got all the tests back.  We can handle most of this over the phone.  Her BP is low.  50s over high 20s or 30s and she’s fine.  Something is weird with that.  Some of the time it’s higher, but never “normal.”  Critical care attending had to be paged – no one likes the BP.  But she is warm and well perfused.  Her cap refill is good.  She is alert.  We’ll see what cardiology wants to do.

When I was talking to the pulmonary attending, I asked how could I have done this differently.  This is what she said.

• You have to get over anniversaries.: Two years ago Bella aspirated.  She went from this to this:  From cute in her Easter outfit to sedated and paralyzed fighting for her life.  Not something you get over quickly.

• Don’t wait till you are worried sick and it’s 2 AM.  Come in during the week and during working hours.  There will always be at least a pulmonary fellow if not a faculty staff that can come down and take a look at her x-ray.  Insist before the Emergency Center attending just admits you (because we are an automatic admit).
• You did the right thing.  You did what we tell you to do.  She wasn’t doing well.  You brought her in.

So what do I know now that I didn’t know last Friday.  Not much.  But I do know that she probably didn’t aspirate.  Her lungs scare the bajeebers out of people. When you smell fear in doctors, it’s not a good thing.  She’s still not OK. But she will live.  We made it through another Easter. 

I am grateful that when we are admitted we go to the PCU.  They are so kind to us there.  They all know her and love her.  We get some much love there.

Well, Bella Boo, keep fighting.  We’ll get through this spring somehow.

Special To Me

I love Rachel Coleman's song "Special to Me." It makes me teary every time I hear it. We have had quite the weekend - I'll blog later when we get home, but I wanted to share this video. I couldn't find a you tube of Rachel singing this song, but I found this one - and I love it! I love the love!

How I love you Bella!!

Glad that week is over

Sweet, crazy girl.  Allergies?  Growing?  Aspirating?  Who knows.  At least we made it through the week at home.  It was one of those weeks that I think I should call the doctor, but then I think what are they going to do that we aren’t already doing?  With all the meds she has, plus all the PRNs we threw at her, I think we have all of our bases covered. 

Anyway, we survived and we are grateful that week is over.  I am hoping for a great week this week.

I have been wondering about vacation.  We had thought that to protect Bella and keep her in one environment that we could keep clean, we might rent an RV and go somewhere.  But then I went on an overnight camp out with our young women from church and realized that plan won’t work.  Where do RVs park?  Campgrounds.  What is wrong with campgrounds?  Smoke.  Lots of smoke.  So there goes that plan. 

And then there is the stimulation issue.  Bella gets over stimmed so easily.  If she’s tired, if we laugh too much, a lot of things set her off.

Have to keep thinking………….somewhere away from a lot of people and noise and nothing to upset the lungs - Cause we want to have fun!!

Breathing and Eating

(aka Mama’s Panic Attack)

I am trying to just keep breathing over here.  We have made a huge step.  Bella’s GI doctor felt that she did well enough with a couple of hours of G-tube feedings to try and push her a little.  So the amount she would have gotten in four hours, she is getting in three, effective yesterday.  And on top of that her color is all off today.

Nurse called out today.  Let me just say that I am grateful we live in Texas.  I am grateful that Bella has Medicaid, hence she has almost 24/7 nursing.  There is a lot going on with the Federal Budget and Medicaid is in the spotlight.  So far, Bella hasn’t been touched.  And for that I am grateful.  My friend Lacey has no nursing with her son Jax , and it kills me.  When I am tired and think about feeling sorry for myself, I think of her and realize how blessed we are.

back to Bella…so with no nurse, it’s me doing everything today.  And I’m watching this little monkey play and get all of her cords messed up like a big plate of spaghetti – and I am happy, and I am scared.  She’s going to be fine, I tell myself.  And then I go and review the signs of aspiration, as if I didn’t have them all memorized, just in case I might have missed something.  Because we have been down this path before and it almost killed her.  I have been playing out in my mind the worst case scenario – which ambulance company to call or just to call 911, who should pick up the kids after school?  What about sister’s activity at church tonight?  Who will watch them tomorrow?  And the day after that?  And the day after that?  When to call Jason.  Everything.  Too bad my imagination is so good. My heart starts pounding.  The adrenaline starts flowing.  I start thinking about conversations with doctors.  So now I am trying to stop myself.  She is not the same girl she was.  She is stronger.  She is amazing.  She loves life.  She wants to live.  She shows me that everyday.  She is going to be fine.

Thank you for leading the way Bella.  You are amazing!

Sweet Bella

I just love this sequence.  Look at me, play with me, love me!  Bella’s theme

She who won’t bear weight, will stand in the stander.  Sorry love.  Physical med and rehab doctor was ordered.  Soonest opening – July.  Oh well.

These two – they want to play so much!  How they make my heart sing.

She looks so big here! 

Medically, although you can’t see it in these pictures, she has been super junky and the vent has been our friend a lot.  I guess I only take happy pictures. LOL.  Hoping that Spring is almost finished. So grateful we have all the supplies she needs to stay happy.

She’s so happy!

That is what a new nurse said about Bella.  And she is right.  Bella is just happy to be here on Earth. 

The PT wanted to try out the creepster – she wasn’t pleased.  What are you doing?  Why are you trapping me in this thing?  We’ll have to come up with another way to teach her to crawl.  Her spio pants and lift came.  So far they haven’t made any difference on that right leg – she just won’t bear any weight on it.   

Now swinging – that is something she loves, loves, loves!

Hanging out with the family – love ya babe.

Thankfully we got to start our antibiotics again on Thursday and everything is starting to clear up in those lungs again.  Two weeks on is great – two weeks off is a little too long.  Looking forward to all of this pollen settling down so she can won’t have to work so hard and will be able to get off the vent more.