Christmas in August!

 

 

 

 

 

 

Bath chair, tomato (also known as a tumble form), and the kid kart.

 

(overlook the lack of make-up and hair not being done!  It was a very busy and stressful couple of days!)

WAHOO!  They came!!

 

 

 

Joy was so excited to see what this was all about.  Here is Bella, the Queen of Sheba.  :)  And then with some entertainment added to the canopy.  :)  

 

 

 

 

 

We were so excited, we took a walk – to the mailbox!  The girls ready to roll  …….and then at the curb – wahoo!  Welcome to the great outdoors little one!       

 

 

 

 

 

Bella back in bed.  Her reaction to everything….

For Family Home Evening we took a short walk around the block. (!!)  My family did that!

         

 

 

 

 

 

That night during dinner, we had no nurse.  Jason brought his dinner in to eat with Bella.  “She is lonely.” he said.  :)  Sweet Papa.

She’s making progress!

 

 

Big sister Sammi

 

 

 

 

 

PT – The PT was astonished by how well Bella is doing!  She is making such progress.  Who would have ever thought?

Reaching!

 

 

 

 

 

 

Moving her head to track toys

 

 

 

 

 

 

Putting some weight onto her feet

Roller Coaster

Life with Bella is uncertain, much like a roller coaster.  There are the good times and there are the bad times, but always there is the love.  We love you Bella!

Right now is a good time.  Bella is doing great!  Her pneumonia is gone.  Now that she is eating directly in her small intestines, she is no longer refluxing, therefore no longer aspirating.  I wonder how much energy she was using just on GERD and aspirations because my baby hasn’t even been home a week and look at what she is doing…….

 

She rolled over!!!!!!!

She is having tummy time – for the first time in her almost 10 months of life.

 

I can’t believe it!  She rolled.  She is kicking her legs.  She is moving her arms.  She is acting like a baby!  She lifted her head.  She no longer sleeps all day long.  Is this my baby?  My Arabella?  WAHOO girl!

She is getting off the vent – we are up to 2 hours a day – and sating in the upper 90s.  This kid had double pneunomia last week?  You are amazing kid!

Some super sweet pictures:

There’s No Place Like Home!

We are home!  I am so grateful.

Her hair is getting so long!!

 

 

 

 

 

In the hospital and then home at last….

Our night nurse pulled me aside and asked me if I understood that Bella is a very sick little girl.  Yes, I understand that and I cherish every moment she is in our home.

Hoping for tomorrow!!

Good news – looks like we are going home tomorrow!!

Bad news – looks like her heart would like some more attention.  She is having regurgitation in her her mitral and tricuspid valves.  The mitral valve is more worrisome to us right now because it can cause increased pressures in the lungs.  And with pulmonary hypertension, we don’t need any more pressure there.  Oh well.  It’s another medication and more monitoring.

She lost her IV access (no surprise there.  I was shocked she kept it for 2 1/2 days!) so they had to decide.  Is she staying awhile, then re-stick her and get access or going home, change her meds to PO.   Home won!  So assuming all continues to go well, we should be home for the first day of school!

She isn’t all smiles.  She is uncomfortable and fussy more than usual.  I think it’s either digestion or the site of her GJ tube.  The stoma (hole) had to get bigger to go from the G to the GJ tube.  It’s pretty red and there’s still a little blood when I clean it.  I’m hoping that’ll heal quickly.

Jason and the kids came up last night to bring me more clothes and food.  They love the distraction station – and Bella loved listening to their noise.  :)

Bella during OT:

Long Day, Long Post

Poor Bella – they won’t feed her – and she is hungry.  But the last thing she needs is more formula in her lungs, so she goes hungry for now.  She alternates between being extremely fussy or talking to lady bug.  She is probably telling her how horrible we all are not to feed her!

The doctor doesn’t trust her, so she is treating her very conservatively.  Bella is down to 1/2 a liter of oxygen and sating well.  She still has nasal drainage and lots of gunk that she is coughing up.  She still has the dry smoker’s cough after the gunky coughs.  The RT and I decided it’s probably just irritation.

The doctor feels Bella will have the GJ for a couple of years and then they’ll probably try the radical approach to the fundo (the 2nd image in my notes to self from yesterday) where she will create a new fundus to wrap around the esophagus.  The doctor says it’s not ideal, but it’s what we’ve got at this point.  Poor Bell.  The sad thing to me is that is no food for the next two to three years unless we get a miracle and she outgrows this on her own.  That means no birthday cake, no ice cream, no yummy cookies….but we will have Bella and that’s good.

Bella’s EKG: She hates it when they take all of the stickers off.  Sweet thing.  The nice thing about being vent dependent is that a lot of the tests can come to the bed side – so very nice!

The doctor did say that the nystamus that increases with therapy is because of muscle weakness – one of the joys of DS.  When she is tired or trying to focus on other things, it’ll get worse.  As she ages and gets stronger it should go away.  Great!  It’s crazy – I forget Bella even has Down syndrome I’m so focused on other things.

Super Duper Fantastic News!  My Mom bought Bella the Nap Nanny!  I can’t believe it!  I am so grateful – it will help so much.  And I won’t have to worry so much when she is sleeping!  Thank you Mama!  It’s August and back to school time.  With four kids needing school supplies….it just wasn't in the budget.  We even had a garage sale last Friday (yes, it was 100 degrees outside) to try and raise money for it.  $21 later…..have I ever mentioned how much I hate garage sales?  :)  So, thank you Mama.  Truly!

Bella had her echo – I haven’t gotten the report yet, but I’m not worried about her heart right now.  It’ll tell us about her pressures though, so that will be helpful.  She also had OT and PT.  She has had a busy day!  Look at how well she is using her hands to reach for toys!

 

I am more determined than ever with this reflux to get her sitting up.

 

 

 

 

 

 

We are back from having her GJ tube placed.  It is finished. As soon as her formula is prepped, she can eat.  This is a huge change for us, but it’s what is best for Bell.  It looks very simliar to the mickey – except there is a 3rd port on the button.  So now we have access to her tummy or her small intestines.  I am hoping this will help.

This is the plan…

The surgeon that did her second fundo happens to be on call today.  I am grateful for the seemingly innocent coincidences during this stay.  President Monson says coincidences are God’s way of being anonymous.  I am grateful.  The surgeon remembers Bella.  Makes sense.  It was a terrible mess when she went in there – a partially dead stomach, abscess, fluid everywhere.  I guess that’s hard to forget.

She says that there is not enough tissue left to re-do her fundo.  Which means we are left with option number 2.  Bella will get a JG tube.  The good thing about that is it’s pretty minor to put in (compared to major surgery). It’s done here in Interventional Radiology – just like her PICC lines were.   Bad things – continuous feeds.  Where Bella goes, so goes the feeding pump.  If it comes out, we have to return to the hospital, you can’t re-insert these at home.  They tend to get blocked more than g-tubes.  And the small intestines weren’t designed to be the start of the digestive tract, so a consult with the dietician has been ordered.  Her super high calorie, super fortified formula may need to be changed.  We’ll  see.  And now that I know she is refluxing so badly from just 15 cc’s (that’s 1/2 an ounce), I am going to be so much more paranoid with keeping her up in the 30 degree angle and super stingy with how much flush the nurses and I can use for her meds.  I am saving my pennies for a Nap Nanny right now.

The pulmonologists want a swallow study.  Cardiology wants an EKG and echo.  I’m hoping now that we aren’t having major surgery, just a procedure, that we can be home before school starts on Monday.

Bella is feeling better and I was bored so we were playing:

 

For my record keeping –  The picture that Dr Brandt drew on the crib sheet.  The left is what happened the first time – the fundus is wrapped around the esophagus.  The middle (minus the bold line) shows what was left after they re-sectioned her fundus.  On the right is what she had to do – basically just pulled it over and hoped for the best.  The left picture also shows what the GJ does – goes in the stomach and the tube goes down into the small intestines.  The circles are the sphincter there.  This also explains why she must be feed continuously.  The body naturally protects itself from overeating and just sends out small bits to the small intestines.  By bypassing the stomach, we have to just give little bits or she’ll get sick.  The liquid balance, the osmosis balance, has to be kept in mind as well.  If too much is dumped in there, the body will send lots of water and she’ll get diarrhea.  Other options later on when she’s bigger:  The second image with the bold line this time.  She could go in and staple down to basically create a new fundus then wrap that around.  A more radical option that is sometimes attempted (bottom image) is to bring a section of the small intestine to the surface and feed directly there.

She also apologized again for all that Bell has been through.  In all of the fundos she has done, she has never seen this.  Same thing Dr Stein said and Dr. N, her first surgeon.

Question yet to be answered (or asked) – reminder to self:  The Zantac will help with the acid in the stomach, but will she feel hungry all the time?  Sounds miserable!

What to do with that cute tummy

We are back from the Upper GI and it shows exactly what I’ve been saying – her fundo is not working.  They had 120 cc’s of barium all ready to go to really test her little tummy.  It was not needed – after 15 cc’s the barium shot straight up her esophagus and into her oral cavity.  Now, what will they do about it?  Talking to the attending we have two options.  1. Try to re-do the redone fundoplication. (Third times the charm?) or 2. Get a J-peg.  I need to do more research, but from what I understand, her g-button goes straight into her tummy and a J-peg goes straight into the small intestines.  There are pros and cons to both.  I am talking to a lot of people.  We’ll see.

Her OT and PT here have reclaimed her.  She has her moving pictures on the ceiling again.  Overall, it’s going well.  The antibiotics and additional steroids are helping her pneumonia.  She hasn’t had a thing to eat since Sunday night’s feeding, so they are really pushing pedi. surgery to hurry up and decide what to do so she can either get TPN or something.

Everyone can’t believe how big she is getting!  6.9 kg and 62 cm

Happy Thoughts

When we got to the ER, they tookus to room 19.  I stopped outside the door and said, “This does not bode well.”  Room 19 was the first ER room Bella went to when we brought her home from California.  It was the beginning of the hospital stay where they dumped us in the 15th floor for weeks and weeks to wait for Open Heart surgery – it wasn’t a pleasant stay.  The nurse looked at me and said, “Then we’ll move.”  And we went next door to 20.  Ah, 20.  Lovely 20. 

We stayed in ER all day waiting for a room in PCU, but it was worth the wait.  We got Bella’s room.  Truly.  We got the same room as our last stay.  Room 4.  Miss Juli, the Child Life Specialist up here, told me one day that this would always be Bella’s room.  I just didn’t think they meant literally.  :)  What a blessing to me that it worked out this way.  I am completely comfortable in this room.  I know exactly where everything is.    We were welcomed with open arms back to the unit. They even remembered how cold she likes her room.  PCU – our home away from home.

Jason, Becca, and Jessi came up and brought me a few essentials – clothes, toiletries, and food.  We have learned a few lessons over the months.  It was wonderful to see them!  I told the PA tonight to use big letters and write on our chart that we need to be home by MONDAY.  School starts on Monday.  My other kids need me that day.

A Cute Abdomen

We are here at Texas Children’s.  Our last 2 night nurses have said something is not right with Bella.  This morning, our night nurse said you need to call the doctor. The doctor said bring her in.  The ER said she is being admitted.  Big sigh.

Over the last week, Bella has had different secretions, and then coughing spells.  It would take about 1 1/2 to 2 hours to clear out her lungs in the morning.  But after that she had this strange cough  - it was a dry cough – kinda like a smoker’s cough.  Then her belly is distended – getting bigger and bigger.  Her respiration rate has increased, probably from the abdominal cavity pushing up on her lungs and diagram.

They have ordered lots of tests – we’ll see what happens.

So far the answers they have for me are:

1. Double pneumonia – treating for pneumonia and aspirate pneumonia since she has been vomiting the last little bit.

2. She has a large liver.  It goes all the way down to her pelvis, but her liver enzymes are normal.

3. Her x-rays show no obstruction.  So unless the belly gets worse, it will not be followed anymore.

4. We are going to PCU – our home away from home.

5. Nothing to eat until the breathing rate calms down.  They were able to get an IV in (wonderful nurse!).

Things for me to figure out and pray about:

What am I going to do when this happens again in the future?  I only have Kris for another week and a half!

Sweet Bella

We LOVE that she can be off the ventilator some every day now. We put on the HME and she could be in the picture in the living room – yeah for small victories!

Silly girl – when she sleeps, she totally spreads out. Remind me never to sleep with her when she’s older. I have a feeling she’s gonna be a kicker! :)

OT – she is doing well, but it wears her out. She is exhausted for a few hours after OT. I also find it very interesting- The therapist stimulates her nerves and deep tissues and her nystamus has increased significantly. Not just a little, but a very marked increase – only during and right after therapy. Hmmm….

Sweet Bella. Last night’s nurse hadn’t been here in about a week and he wasn’t pleased. She has so many more secretions. She is working harder to breathe. She is a little puffy in her face. She is sating well, but her heart rate is a little elevated. Her tummy is a little distended. Praying that it's not her liver - or anything for that matter. We’ll see. We go and see her doctor and cardiologist Friday.

Normal

Overheard this conversation between my 6 year old and her  friend.

“What is that noise?” Friend asks looking around with big eyes.

“Oh!” replies my 6 year old, oh so nonchanlantly.  “She’s being suctioned.  It means that gunk is getting out of her lungs.”

“Oh.”  And back to their play.

Sometimes our normal cracks me up.  :)  I wonder if her five year old almost Kindergarten friend even knows what lungs are.  :)

I had to report on two things.  First, please pray for Zoey.  Cancer is an ugly 6 letter word.  I so, so, so hope she hasn’t relapsed.

The second is good news.  Our OT way here yesterday.  All of the financial arrangements have finally been made and Bella is approved for OT three times a week and PT two times a week.  Yeah.  Our OT almost skipped out of here yesterday!  She is so impressed with our sweet girl.  She turned to me and said, “She has so much potential!”  I beamed!  My heart swelled with pride!  I know – I have big plans for our girl. 

We love ya sweet Bell!

Incredible!

I still can’t believe Bella is using an HME – someone pinch me!  Not the most flattering picture, but I had to record this moment!

 

I am holding her and she is only attached to the pulse ox!  What a wonderful miracle!!!

From my daughter’s fortune cookie:

“You can’t stop the waves, but you can learn to surf.”

A little bit sleepy

Bella and I are a little sleepy today, but we spent all night in the ER, so what did we expect?  Nothing major, no worries.

The balloon that holds her g-button in place burst and out it popped.  We had no spare on hand because that was her spare!  That’s the third time it’s popped out in a little over a week.

Since the stoma closes up so quickly, the doc said we needed to get down to the hospital and get a new one placed.  So the ambulance was called and we left.  My sweet kids see way too many paramedics and EMTs!

They had to stretch out her stoma and then finally were able to re-insert the button –yeah.  We had another contrast study done to make sure we were in the right place.  I’m glad they do those, but on the other hand, they have to lay her flat to do them.  They insert the contrast and she refluxes.  She was coughing and choking by the time we got back to the room – and then she vomited.  Her fundo is not working.  Gotta figure out what to do about that.  We are trying to get a wedge or something to put in her bed, so that she’ll always be at the right angle – our blanket creations only work so well.

We are home and Bella was a champ through the whole thing!

9 Months Old Today!!!!

Happy Bella:

And Serious Bella:

How is Bella?

I dread this question.  Well meaning people ask all the time, and I pause for a while unsure how to answer.  How is she?  Compared to what?  Compared to a week ago when we were battling an respiratory thing?  Compared to a couple of weeks ago when we were battling a stomach thing and dehydration?  Compared to a couple of months ago when she had to fight so hard just to stay alive?  Compared to your normal, average 9 month old?  So, the answer I have settled on is “OK.”  She is OK.  She is my amazing, sweet, smiling, fighting, loving, little Bella and she is doing OK.

On Sunday I went to church and someone asked how she was.  Pause.  OK.  Oh good, when is she coming to church?  Ahh…in a year, if we are lucky.  shock.  Oh well.  So I retreat back to my medical world where I am beginning to feel more comfortable.  :)  Crazy thought that I would ever feel comfortable here.  Case in point.  I now search the web looking for medical supplies to make our lives easier.  :)  My latest find, the adapta-cap from Baxa, no more losing even one drop of precious compounded medicine that’s only good for 8 days.  We are at that pharmacy every day it seems like for something.

Bella is doing so well.  Dr. Louis didn’t want to say anything, because she didn’t want to jinx it, but Bella has been out of the hospital for a month!  A month!  Wow.  She is amazed.  These kids, she says, have a very high re-admission rate, and here we are one month out!  WAHOO!!!  She congratulated us and lectured me on taking care of myself.  :)  I have been sick since I got home.  Stress, it’s just stress.  We’ll get through.  :)  She cautioned us that Bella is still very fragile, but that we are doing a good job.  :)

Bella is now taking inhaled gentamicin.  She was on gent many times before, but never through the nebulizer.  Fun!  That way it goes straight into her lungs where she needs it.

Her collar trials are going well.  She is totally on her own during them – no oxygen anymore (HUGE).  And she is doing it. She is keeping those sats above 90.  Sometimes only for 30 minutes, sometimes for an hour.  But she is doing it.  Way to go baby girl!

Her PT came out to do her eval and was pleasantly surprised by how well she is doing.  Yeah, Bella!  She has more head control than she expected.  Again – yeah for the strong girl!

I found out that her OT’s specialty is oral issues – wonderful!  And everyone that knows the therapists in the area is thrilled and shocked that we got this one.  She has an excellent reputation and is very hard to get into.  Not only did we get her, she comes three times a week.  Yeah again.

So, how is Bella?  She is OK.  She is getting over this respiratory thing OUT OF THE HOSPITAL.  Her therapies are all lined up.  She is the cutest little bug.  And we love her.  So I guess she’s more than OK, she’s fabulous.

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

Bella continues to battle little bugs.  She has not had full strength formula for longer than 24 hours in the past 2 weeks.  Thank goodness for Pedialyte.  I think we should buy some stock in the company.

Bella’s g-button came out twice this past week.  The first time was on Tuesday.  We had to have a contrast study to make sure we had correct placement and had to see pediatric surgery.  It’s always such an adventure to go downtown and see 5 doctors with an EMT, Paramedic, and RN.  I am grateful for them though.   She was vomiting and developed a fever.  So now she is on antibiotics.  The track for the g-button takes about 6 months to totally heal.  The second time (Friday) it came out, we just stuck it back in.  This time we replaced the whole thing.  They figured out the balloon that holds the g-button in place was leaking, so it wasn’t holding everything together the way it was supposed to.  We also learned from her contrast study that she is refluxing like crazy.  UGH!  Poor thing.  She lives in a 30% – 45 % angle all the time.

She spiked a fever on Thursday night and has been requiring some oxygen supplementation occasionally at night.  She was just miserable all Thursday.  She didn’t want to be held or look at anyone.  Just leave me alone and let me sleep!

That’s the bad, now for the good. 

The pulmonologist felt that her 1 hour collar trials were going so well, she could move on to 2 hours on an HME three times a day!  Wow – that is huge!  What is an HME?  When you and I breathe, the air comes through our nostrils.  The air is filtered and warmed there before proceeding down to the lungs.  The HME acts like a nose.

This picture is from http://www.tracheostomy.com.  It shows a cute little guy wearing an HME over his trach.

 

I can’t believe she has gotten to this point so quickly!  Way to go my strong little fighter!  When she is off the vent, she is able to cough more easily and get out more secretions.  We watch her like a hawk and suction a million times.  We have decided to work up to our goal of 2 hours 3 times a day.  So we are starting at 1 hour 3 times a day – as long as she can tolerate it.  She has been sick and weak, so it hasn’t happened yet.  But we are working on it.  She is progressing.  I can’t ask for anything more.  Despite being sick, she just keeps moving on.  What a wonder you are little Bella!

Bella in her swing and sitting up in bed.  She loves to sit up.  We can’t wait for her chair to come!!

Daddy holding a happy Bella (she was feeling well at the moment).  The way I like to see the vent – OFF!  :)