Merry Christmas!!

Picture overload! – but summed up , Bella had a great Christmas!  From feeling good, to getting beautified, to being able to handle the excitement of my family’s gathering, to all of the wonderful presents.

Merry Christmas my beautiful girl!

Plugging and Pictures

Quick note to myself – never allow Bella to undergo a barium study and then receive anesthesia in the same week – not good on the bowels.  Eight days with no bowel movement is not a good thing.  A week with that much miralax, glycerin suppositories, and milk of magnesia – not a happy thing.  A week of painful cramps with no results – quick way to break a Mama’s heart.  We think we are finally seeing the light on this issue.  Just another thing for me to remember in the planning department for the next time.

On a happier note, although these off and on fevers continue, her lungs have never sounded so good.  She has been able to get off the vent for a couple of hours a day.  It’s also been very mild weather here – which has been great for Bella. 

Intently watching her sisters swing outside!!  Chowing down on an arrowroot (gluten-free!) cookie.  They dissolve quite nicely, although we still watch her very closely.  But it’s great for when the other girls are eating cookies and she wants to be just like them. 

Cuddling in the living room watching her sisters play a game.  Discovering Christmas!

Ears, Nose, Throat, and Lungs

Friday Bella had surgery – kinda.  Not what I consider surgery - there wasn’t a lot of cutting going on, but she was put under and that’s a big deal.  The ENT checked out her ears since no one has ever seen them.  I assumed that with all the meds she is always on, this was just a normal, she has DS, let’s just be sure, kinda thing.  Well, I was wrong.  Her poor ears were  full of thick, green mucus.  She is now supporting a pair of tubes.  OK.  Antibiotic drops for three days and future precautions against getting water in her ears.  The good thing, the doc said, was that now we will know if she has an ear infection – junk will drain out of  her ears.  Great.  At least we’ll know.

Waiting for the docs to get ready back in post-op.  They had us wait here because of the vent and pulse-ox.

 

Then they did a DL&B – they did a scope of her larynx and of her bronch.  Throat showed normal anatomy, except for one little thing.  Where her trach was placed, it pushes on soft cartridge.  Before she is decanulated, they will have to remove a small section of cartridge that is currently obstructing about 50% of her larynx.

Down to her lungs – below her trach, the area is red and had lots of mucus.  They did a salt water wash to clean things out and catch a few cells.  Further down they discovered that her anatomy is slightly different than the average Joe – didn’t surprise me.  Bella always does things her own way.  He also saw that her airways are very spastic and when they have to work (they took her off the vent and made her breathe), they will become spastic and then collapse.  He said that she’ll sound like she’s wheezing – yes, she does.  So the hope is if she’ll ever grow, that her lungs will grow and the cartridge will get stronger.  Also makes sense why she loves her vent- positive pressure keeps those airways open!

She came out well.  She took one look at her hand with the IV and shook her head NO repeatedly.  She was really tired and wanted to be held – but the important stuff – breathing, her heart still beating – that was all good.  Mama earned another ulcer.

On the way home, she just wanted to be held.  We couldn’t of course, so her sweet nurse sat on the floor of the van and held her hand next to her face the whole ride home.  I was grateful.  That pathetic, I don’t feel good look just breaks my heart.

Later in the evening she spiked a fever and turned bright red.  She just wanted me to hold her all evening.  We gave her Tylenol and Benadryl and by this morning, she is her normal happy self – albeit the fever continues.

Swallow Study

Bella’s Swallow Study went great!  She took pudding consistency beautifully – I was the one feeding her, so I couldn’t see, but I could hear behind me – oh, wow, look at that!  Yeah for Bella!  After that success the Speech Language Pathologist decided to go for thin liquids – and she did it beautifully!  Oh my!  Since I didn't get to see any of it, I had her re-wind the tape and show it all to me right then.  We’ll expect a written report in about 2 weeks.  The oral results are fantastic!  She has been approved for Stage 1 and Stage 2 baby food.  Wow!  I would never have dreamed!  Joy’s study is much worse than Bella’s.  Goes to show that no two kids are ever alike. 

This was her second swallow study – the other was right before the trach/fundo/gtube.  It too showed no aspirating during feeding.  I have to talk to her GI doc, but that seems to suggest that her aspirating isn’t happening going down, it’s the reflux that’s the problem.  Regardless, she will be upright for an hour after eating.  Period.

When OT came two days later, we started.  She is now the proud owner of many different feeding spoons with various textures.  The important thing is – she did it!  She took food from the spoon.  We played in it.  We experimented with it.  She swallowed it!  Her OT said the last 18 months of intense oral stimulus and giving a billion tastes every day paid off right at that moment.  Her OT and I were near tears!  Way to go Bella!!

Bella’s Week

How Bella is doing seems to depend on the weather.  So she is having some good days and some days that need more holding and sleeping.  We got to see our PCP this week.  She put her on two antibiotics.  One strong and short in duration.  One that she will be on for 2 weeks and off for 2 weeks until further notice.  I’m hoping that will help us get through the season.  She also got three x-rays of that troubling knee.  We’ll see.

On to the cuteness.  She has become such a ham!

She is starting to do her version of pulling up – wonderful, exciting, and terrifying!  We have to watch her like a hawk!

Monday is her Swallow Study.  I am freaking out – totally.  I keep reminding myself that she is not the same baby that aspirated on formula and ended up in the ICU for months with aspirate pneumonia.  She is strong.  She is upright.  She is my ever-changing, ever fighting Bella.    (And the ER is just down the hall from where the Swallow Study is done in case anything goes wrong.)  Breathe, Breathe, Breathe.  No one has prescribed me a Valium yet – some days I wonder!    Anyway, we have to bring the food.  She doesn’t eat.  She has never eaten.  Although we eat in front of her and give her tastes of everything – she loves that!  I talked with the dietician as to what food to bring for her Celiac.  So here we are – potato chips (for the cracker), arrowroot cookies (for the cookie), Jell-O (for the pudding), and apple juice (for the juice).  Hopefully everything goes well and we’ll start down the path of learning to eat by mouth!

Developmental Services brought a parachute to play with on Friday – very fun!

This is what she loves – being off the vent and in the living room!  But this 2nd picture is more what I always see – “PICK ME UP!!!!”

Lovin’ and Playin’

Bella has been so happy this week.  She has not been doing too well on the breathing side of life, but she doesn’t let that stop her.  The weather has been nuts, so she has been all kinds of colors.  Getting off the vent didn’t happen much this week.  We canceled our endocrine appointment that we have waited over six months for.  We just couldn’t take her out looking like she did.  I don’t want to be admitted for increased oxygen needs and being blue.  It’s the weather – yucky, rainy, wet, bad for kids with yucky lungs weather.  It just means she sleeps a lot.

We had the wheelchair guy come out to the house for some adjustments to her chair.  Did you know this chair folds flat?  I sure didn’t and haven’t for the 14 months we have had it.  My poor van and the abuse I have afflicted upon it.  I didn’t know whether to kiss the tech or hit him.  LOL.  Oh well, that will make our many appointments downtown a little easier.