Bell’s Week

Tuesday morning brought labs – lots of them.   Poor thing.  Three adults to make it happen.  I just love the shades babe!

Happier times – swinging!

Music therapy

OT – coloring

Friday morning Jessi, Alex, Bella, and I left the house at 5:45AM to make it downtown for an abdominal ultrasound.  Here she is waiting and waiting for her turn.  The poor girl started freaking out the moment I wheeled her into the exam room and when those blue gloves came out, total freak out.  Despite all of my reassurance that they was a no owey day, she cried and panicked through the whole thing.   

I figure between the kid’s prenatal ultrasounds and all of Bella’s I’m pretty good at reading ultrasounds.  I asked the ultrasound tech if the gray blubs inside the gallbladder where the gall stones.  She told me, “I can’t tell you anything.”  That’s right.  But it was funny at the end of the exam she said, “OK, let’s turn her over so we can see if the stones move.”  OK, I get it.  Read between the lines Mom. I don’t expect to hear anything until Tuesday with Memorial Day.  So we’ll see.  I did find out that she has a family history of gall bladder problems.  What invaluable information!  We’ll see what GI says.

 

Sunday morning Bella and Joy watching you tubes videos.

She is doing awesome.  I have tried a couple of naps off the vent – and she does really well. Oxygen she still needs, but her heart rate is going down, which is great.  Her respiration rate is high, but I guess that’ll just be her baseline.  She’s anywhere from 40s to 80s.  Pulmonary is on Thursday.  Interested to see his plan for the summer.

Bella’s Week

Being normal – going outside, spilling whole boxes of cereal on the floor.  So fun!

Music therapy – only two more weeks till school is out  We are going to miss this!

ST – She is liking the idea of eating.  Biting and chewing, not so much.  Those are our next goals in eating therapy.

 

 

 

 

Cool sequence.  PT wants her to stand up so badly!

 

  I had to take this picture.  I am actually starting to believe that this machine might leave my house.  For good.  The idea of no life support.  Awesome!

 

 

Bella has been having some periodic pain.  It attacks at various times and is relentless.  She screams, “n-ah, n-ah, n-ah.” (Her version of “No!”)  She is inconsolable.  It has woken her up from sleep.  It has stopped her during the day.  After about 30 minutes to 1 1/2 hours later, she’ll settle down and go back to normal.  I want to rule out her gallbladder.  She has many gall stones, but they won’t treat until she becomes symptomatic.  So this coming week we have blood tests and an ultrasound.  We’ll see what we find.  Hoping we can figure it out and get this stopped!

Bella’s Week

Things are good here.  We are still pushing Bella to see what she can do and she is soaring!  Oxygen only occasionally, vent during sleeping and only occasionally while awake.  Wahoo!

Cuddles and outside time – sliding, jumping and playing with brother

Playing on the Wii with sisters.  You can’t see it because I didn’t take video, but she was jumping and dancing to the beat.

Music therapy

Being cute!                                                               Playing piano

Dancing with Jessi – if you stop, she’ll grab your fingers and have you start again!

Making Mat Man in OT.  She was saying a couple of the words!  We are all so curious if she will start vocalizing once she is capped and then decannulated.

When Bella won’t sleep for me, she will always go to sleep for Daddy!  How thankful I am for him – especially after long days! He is so tired in that picture.             Another Bella first – a bath in the tub.  Normally the nurses and I just bathe her in the sink.  She is tiny and still fits.  But we are thinking in a forward direction these days, so I plopped her in the tub with her sister, being careful of her trach for course.  Fun!

 

Now that I have accepted that decannulation is in our future, I want it.  Our next steps are capping during the day and staying off the vent while sleeping.  So I tried a small nap this afternoon.  Stats of 97, Heart rate from 67 to 119.  Pretty impressive little one!

Bell’s Week

Bella and Music therapy.  She simply adores it!

OT – working on auditory processing and different textures.  She loves the OT’s mirror!

PT – what an amazing thing is a slide!

Loved this – she is checking out a caterpillar!  Studying it so closely.  Later in the week, she saw another caterpillar.  She watched it, then signed “caterpillar", and then “butterfly.”  She is a genius, I tell you!  :)

A member of Bella’s biological family has reached out to our family.  We are so excited for Bella.  No one can have too much family!

Bella has done awesome this week off the vent.  You are doing it Bell.  Every day you are growing and getting stronger – and mischievous.  This little one likes to tease and play games!

She has rocked my world (again)!

PT on Monday – she loves to be outside!  I’m so afraid of what we are going to do when it’s 100 degrees outside and she can’t understand why no one will let her go out!   Doesn’t she look great?  Such a big girl!

Tuesday morning at way too early in the morning, we loaded up and headed to the hospital.  Bella went in for a DL&B – basically they put her to sleep and take a peek in her throat and lungs.  They cut off a granuloma and peeked around her airways.  She has the normal DS slightly misshapen airways with collapsibility, but not too bad.  So much improvement from last year’s DL&B.  They cleaned out her ears and noted that her adenoids and tonsils are huge and need to come out.  Probably next month or early summer.  Then they mentioned the d-word.  Decanulation.  If I hadn’t been sitting, I would have passed out!  Jason commented on my face!  My goodness – how far you have come my baby.  It’ll take some time, but it’s a when, not an if now.  Breathe.  Breathe.  Breathe.

Waking up too early and waiting for our turn to go back…seemed so strange to not be hooked up to a million things!

I have had such a hard time trusting our pulmologist.  I feel like he pushes her so much and I am so very, very afraid of regression.  I don’t want to lose what we have all worked so hard for.  She has worked so hard for.  I seriously was panicking imagining what he would put her through when we were in house.  So that d-word really rocked me.  Sure, I had hoped that would happen.  And I was beginning to allow myself to think maybe next year.  But he is talking sooner than that.  Panic.  Breathe.  A million thoughts flashed through my mind when he said the d-word.  Nursing – gone.  (that is great and that is bad).  School – she could go.  Life – we could have one.  Bedroom – she wouldn’t need half the house anymore.  A million thoughts.  But mostly panic.  Mostly fear – fear of the unknown.  I know this world.  What is in the next room?  Will it be good?  What about oxygen?  There is no way this kid is keeping a nasal cannula on.  What happens when she gets sick?  Questions.  Fear. 

After recovery, we headed up to PCU.  They stuck us in a pod.  I hate pods!  I like it when we have our own room.  I am so paranoid about germs when we are in the hospital!  But as the hours ticked by, I saw the hand of Providence in our placement.  In the pod, there are four beds, so us and three very sick kids.  They didn’t move.  They laid in their cribs attached to machines.  One little one dipped into the 20s.  They were rejoicing because she wasn’t bradying as much that day as normal.  The other one was headed to Health Bridge, basically a long term ICU care facility for children.  And the third one was having troubles with GI, as well as respiratory.  I sat listening to all of this while trying to keep my little wiggly monkey in her crib.  (and suctioning out blood – ick!  granulomas has a lot of blood vessels in them – who knew?) And it dawned on me – we don’t belong here anymore.  This isn’t our world.  It was.  We were there.  But in the past three years, Bella has grown and gotten stronger!  We don’t fit into the normal DS kid world yet either, but we have left this world behind.

Bella is ready.

(and maybe just as importantly) I am ready.  Have I held her back?  Or have I kept all of the doctors/nurses/therapists focused on treating her as a whole person rather than just individual organs?  I’m not sure, but I know that I have finally gotten to the place where I am ready to take the next step with Bella.

We are ready. 

They kept us overnight and we headed in for a chest CT the next day.  The doctor is still looking for a reason for her long dependence on the vent.  I bribed her with a cookie.  She doesn’t eat, but the child can lick!  She had fun with that for a while. 

Bella always surprises people at the hospital.  If people come at her with gloves on, she goes into fighting mode.  Wanna check if her IV is still good, you are gonna pay for that knowledge.  It’ll take at least two of us holding her down for get that blood return.  CT scan and she has to lay perfectly still?  LOTS of velcro, blankets, and Mama holding her hands above her head and singing.  I love her fighting spirit!  She is alive because of it!

So our new plan is to be off the vent whenever she is awake.  T&A in about 6 weeks.  And then to start capping her.  Fortunately for me, I had an excellent pulmonology fellow who reassured me that capping takes time.  They won’t just yank her trach out.  Right now she is doing excellent.  Way to go Bella!  You are awesome!