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

Friday, July 30, 2010

A Big Girl Bed

We ordered Bella a Sleep Safe Bed and it arrived today!  Wow – it’s big!  This bed will last her for years and years.  I am so grateful for it.  This morning she demonstrated to me once again that she cannot be laid flat – her aspiration risk is just too great.  I gave her three meds and flushed it while she was sitting up.  She started retching.  I looked and sure enough there was liquid in her mouth.  How it gets all the way from her small intestine to her mouth astonishes me – that’s the wrong direction.  I am grateful for this bed to keep her in that wonderful 33 degree angle.

Building the bed:

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Playing around in the bed.  That is my 14 and 11 year olds laying in there with Bella watching TV.  She definitely has some growing room!  :)


IMG_6558 Bella and two other sisters


A Night Picture

my crazy girl and her wild hair – I’m loving that she is feeling better.  If it would ever stop raining, we might be able to stop all this wheezing.  Love ya Bell!

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Tuesday, July 27, 2010

Getting Stronger


Valerie is Bella’s nurse four days a week.  She is wonderful.  She loves our sweet girl and Bell loves her back.  Valerie is moving to Delaware – wah!  We are going to miss you so much Valerie!


We attached the kick board to the rocking chair.  This created an enclosed space with lots of padding for Bella.  She practices her sitting here.  She loves it.  She can throw her body backwards and make the chair rock.  :)




Hanging out with Daddy             We painted Bella’s toes!  So cute!

Teresa, one of Bella’s nurses, suggested we try Bella in the Johnny Jump Up.  Bella loved it.  So much freedom!

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Health wise, Bella continues to improve.  She is wheezing like crazy!  But she is getting stronger.  Still on oxygen and the vent, but she’s so happy again.  Yeah!

Thursday, July 15, 2010

Intrapulmonary Percussive Ventilation – what is it?

This is Bella getting an IPV treatment.  She actually seems to enjoy it.  She did not as an infant when they had to use the face mask now it just attaches to her trach.  It’s like CPT, but from the inside.  Here is more info about IPV (from

Intrapulmonary percussive ventilation (IPV) is a form of chest physical
therapy administered to the airways by a pneumatic device. Using a
breathing circuit called a Phasitron, mini bursts of gas are delivered into the
lungs at rates between 100 – 300 breaths per minute (bpm). A high output
nebulizer provides a dense aerosol to deliver medications and hydrate
secretions. Percussive bursts of gas are delivered throughout the entire
respiratory cycle which loosen and mobilize secretions towards the upper
airways and oral pharynx. To many, IPV is seen as a superior method of
secretion removal compared to traditional chest physical therapy, vibratory therapy and other forms of oscillatory airway clearance. IPV can be utilized on patients via a mouth piece or mask interface, and can also be used inline during mechanical ventilation.

Wednesday, July 14, 2010


I am so grateful.  We are home and we now have our very own IPV machine.  I’m hoping that will keep us far away from the hospital for a while.

Monday, July 12, 2010

Better and Better

Bella continues to improve. We have re-introduced all of her meds now and decreased her PEEP to 6. They will continue to monitor her and hopefully tomorrow her PEEP can go down to 5. Then they'll watch her for another 24 hours, and if she cooperates, we'll go home. Yeah!

I have been thinking about Texas Children's Hospital a lot lately.

I hate TCH. I hate how well I know this place. I hate the way this place smells. I hate how so many places remind me of something, something bad. I hate that I know the time that the free muffins are put out in the family room. I hate that I know how to silence all the alarms. I hate that I know what time I need to get up and shower before the resident or PA comes to do their morning assessment. I hate seeing a pink badge on someone because I know what it means. I know that it means their little one is in the ICU, fighting. I hate that I know that the green stickers are from the Ronald McDonald house. I hate seeing other parents and kids here because if they are here, they are sick. I hate that I know the schedule, the routine, the vibe of this place.

I love TCH. I love how well I know this place. I am grateful that I am not totally lost in the midst of each new scare. I am grateful that I can fit into my routine here for the comfort that routines bring me. I love how the nurses, child life specialist, PCAs, RTs and cleaning crew know my baby. They come up and hug me. They tell me how much she has grown. They exclaim over how big she is getting and all of her hair. They care about her. They tell me about their new babies and show me pictures. I love that I don't have to give a detailed medical history to the PAs, fellows and doctors - they already know. They know that I expect to be included in rounds - and they let me have input. I love how everyone remembers that Bella is not an only child and asks about my other girls.

If we have to be in the hospital, I'm grateful we are here at TCH.

Saturday, July 10, 2010

What Happened?

July 10 002

Well, I really think this all starts back when we went to pulmonology and he wanted us to start increasing her time off the vent.   She suddenly started needing oxygen.   The pulm fellow said that this probably lowered the small amount of reserve that she had.  Then along came this bug.   So she kept fighting and fighting.  Meanwhile she was getting a little dehydrated which we didn’t know since she is on continuous feeds (they said this is what kept her from getting too bad hydration wise) and there were no outward signs.  We kept going back and forth to the doctors.  They run a million tests and did some x-rays.  Her lungs look worse than her last admission, but she still looked OK, so we stayed out of the hospital.  Meanwhile her blood pressure is getting lower and lower and her heart med is helping this process.  The heart med is also restricting blood flow to her kidneys since her BP is so  low.  We keep giving her diuretics not knowing she’s getting dry.  The desats continue and the oxygen needs keeping going higher and higher.  Still on Wednesday the doc said we could take her home if we wanted, but after talking and talking I decided we should stay.  They did a direct admit and then the craziness began.  She was admitted to the PCU, but we had come directly from clinic so she had no access.  They start poking and prodding.  She is screaming, well her pretty quiet intubated cry.  They took her blood pressure and it was 50/28 – and that is her totally mad.  They look at her labs and realize how dry she is (that is when they tell me thank goodness she has been on the continuous feeds) and they send us down to the PICU.  Then the horror begins.  I can’t go in because she is now considered unstable.  They work for 2 hours to get a central line.  She doesn’t have access so they can’t give her pain meds.  They have some nasal spray they told me but it isn’t as effective.   I spent that time in agony.  I waffled between guilt that I am the one that decided to admit her so this is all my fault and gratitude that she is here.  I’ve watched from the hallway in the CVICU while they tried to start an Art line once – for one hour they poked her.  That is what was playing over and over again in my head.  Finally, after 2 1/2 hours, they let me back to see her.  They had gotten an art line and then started the central line.  As soon as they got the first line they paralyzed and sedated her, but she had to go through most of it without any relief.  My sweet girl.  She was starting to move a little and trying to find me when I got back there.  Her numbers were crazy.  She needed a transfusion which we got.  They redid all the labs from the previous day.  Wednesday was a hard day for my little love. July 10 007

Thursday she decided that she didn’t like the hospital vent.  She was breathing asynchronously.  She also has a leak around her trach which allows her to make little sounds.  She loves this, but the ICU vents are very sensitive and don’t like air leaks of any kind.  The RT wanted to increase the size of her trach and cuff it.  I just kept thinking how mad that would make her once she woke up and was better.  Fortunately, our pulm fellow knows her very well and overrode that idea.  They ended up putting her back on her home vent and increasing her PEEP.  She was much happier on her own vent.  We did an ECHO to check on her heart.  Thursday afternoon we finally got the answer we had been looking for.  They were sure there had to be an underlying sickness going on here.  There is no rapid response test for para influenza, so it took some time, but at least we finally knew what was going on in the background – para influenza virus, variant 3.  That evening she was stable enough to head back to PCU.

July 10 008

Friday morning her antibiotics were all discontinued since nothing had grown in any of her cultures except her normal flora and we had the positive viral test.  She continued on 5 liters with multiple desats.  IPV and more xrays were ordered.

Today she is on between 5 and 6 1/2 liters.  She hovers in the upper 80s and lower 90s forever  then she’ll shot up to the upper 90s and hang out a while, then down again.  Her pulm fellow really wants that number above 93 for her pulmonary hypertension, otherwise we are just going to aggravate that and then have more problems to deal with.  She gets mucus caught in her airway and the alveoli around it all collapse and she desats.  Then she coughs and her sats go up again and the mucus settles somewhere else and we start the cycle again.  They have restarted her heart med and are reintroducing her diuretics.

Anyway, everyone thinks she is going to be OK now.  It’s just going to take some time.  The thing she always needs, more time.

It’s an interesting battle for these little ones.  The mitral valve doesn’t like it when she gets sick and this crazy spiral starts.  It’s amazing to me the body’s response to sickness – how the heart causes certain problems and how in order to support the heart all of the things we do to support the lungs gets taken away, which improves her heart, but hurts her lungs.  So then they have to be reintroduced before the respiratory status gets too critical.  It’s amazing how interconnected everything actually is.

Friday, July 9, 2010

Quick Update

She’s headed in the right direction now.

I have learned a lot about mitral valves, hypotension, shock, renal function, and how that all complicates a very delicate respiratory system.  Things are looking better and better. 

Thursday, July 8, 2010

Not where we want to be

Summary of a very long day:

  • new GJ
  • visited Special Needs Clinic again to re-assess our plan, consult with pulmo
  • admitted to PCU for 30 minutes, they panic over low BP and can’t get access
  • admitted to PICU
  • one central line
  • one A line
  • one million needle marks all over my baby
  • one blood transfusion
  • every test under the sun
  • one guilt ridden Mama, crying
  • one little girl being paralyzed and sedated and back on the hospital vent
  • consults with pulm and critical med
  • some theories forming
  • kidneys not working really well
  • A line pulled out
  • lots of prayers

Hoping tomorrow brings more hope.

Wednesday, July 7, 2010

Come on babe

 july 7 002 july 7 001

You can beat this!  4 liters and still desating.  The doctors and I are working together to do everything we can.  We are trying to keep you home.  Keep fighting babe.  Love you.

Sunday, July 4, 2010

Glad that week is over…

IMG_6178Bella was so miserable this week.  Her sisters have been passing around a bug.  They would have a high fever for one day and not feel well accompanied with coughing and congestion.  Bella has been sick all week.  We have thrown everything we could at her, tylenol, motrin, breathing treatments, antibiotics.  She wanted to be held and rocked all day and all night.  And to cry.  Poor thing.  Two of our regular nurses have had some personal family problems and have been unable to work.  So to sum up the week, I am tired.  I am glad that Bella is doing better.  IMG_6177Still on 2-3 liters, still doing the breathing treatments, but she no longer looks at me with those sick, sick eyes begging for me to fix it.

By Friday she could sit up in the rocking chair and nap, obviously someone is sitting right there to protect her. 

  IMG_6181By Saturday she was cool enough to wear clothes and talk to sister.


In other news, Medicaid received a copy of the orders for her to be off the vent for 12 hours a day and has decided to drastically cut our nursing hours.  One problem – we aren’t off yet.  We had a couple of good days of 9 hours, since then oxygen has become our best friend.  Oh well, hopefully we’ll figure something out.  Oh yeah and I’ve noticed that she has some edema going on in her little face, the first place I ever notice it.  I’m so hoping it’s staying OUT of her lungs.  We have a chest x-ray and ECHO on the 12th.  Hopefully the edema will have packed up and left by then.  Otherwise we’ll see what’s going on with the Cardiologist then.