Lest ye were worried…

She seems to be on the mend….oxygen requirements are coming down.  She was even feeling a little playful by dinner time.  Becca got her out of bed and put her in the tomato.  Yeah Bella!  Keep on fighting my sweet girl!

Hoping…

We spent all day at TCH today and managed to stay out patient!  Yeah!  Now, her vent settings were increased and she has orders to go to the ER if she needs any more O2.  Her chest x-ray showed some small pneunomias developing at the base of her lungs.  She does not have RSV, and her quick response is negative for swine flu.  They are beginning to think the gag, choke, vomit is just anatomical – that it’s just Bella.  They are going to talk to her surgeon, but it may just be part of her life. 

On the weighter side of things, Miss Bella is getting a little chubby – a lot chubby.  She has gained 0.5 kg in 10 days.  This is pretty normal for a failure to thrive baby.  They work so hard pouring calories into their little bodies and one day their little body goes, oh, this is what you want me to do.  So our calories have been decreased.  We also had to bring out the 6-9 month old clothes!  :)

Nursing Home Stay

We are home!  To qualify for the MDCP Medicaid Waiver Program, Bella had to stay overnight in a nursing home.  We survived.  I am so grateful this program exists so that kids like Bella can get all the help they need.

 

Saying good-bye Bella

 

 

 

 

 

 

 

 

 

 

 

 

Her set up in the Nursing Home

 

 

 

 

 

 

 

The back of Daddy’s shirt became her mobile.

 

 

 

 

 

 

 

 

I just love this picture.  It reminds me of Leonardo di Vinci’s “The Creation of Adam.”

 

 

 

 

 

 

Spread out and sound asleep

 

 

 

 

Home again!

I was so worried about this trip.  Once we got there, I Lysol – ed everything!  We had a few little issues through the night and on the way home, but for the most part it went well.  I am so glad it is over and that Jason went with me.

And then just a PT photo.  She is such a good sport about therapy.  So long as she isn’t too sick or too exhausted, she will do whatever they ask of her.

Bella’s Week

Joy, my 2 year old, adores Bella.  Given the chance, she makes a beeline to Bella and loves her and kisses her.  It warms my heart.  It makes some of the nurses nervous, but I think it’s good for both of them.  :)  Love is always a good thing!

I worry that Bella is bored some times.  She has therapies and doctor’s appointments.  She has a loving family, but during the week when everyone is so busy, she spends her time in her room.  She still sleeps a lot – there is a lot going on in that little body.  But I wonder…….

 

My girls are not allowed to touch Bella unless they “goop” their hands (santizer liquid is our goop).  They are really good about it.  I am so paranoid these days – it’s flu season around here.  It’s running through the schools like wild fire.    That black box behind the cute 8 year old lovingly holding her little sister is a HEPA filter.  I clean with vinegar.  Anything to keep my Bella healthy!

  Lizzy introduced Bella to bubbles this morning!  What fun!  What else can we bring in to you little one?  How can we make your life more full?

This week we went to the endocrinologist.  They ordered tests for her thyroid.  She has grown – notice the chub?  We want to make sure that she is on the right dosage.  They also ordered a test to see if she is making antibodies to her own thyroid.   We’ll see.  She also needed her monthly liver panel.  All of that meant lab.  In clinic the lab techs don’t come to you, you must go to them.  Did I mention my obsession with germs lately?  Do I need to tell you the lab has a very large waiting room full of people?  People crawling with germs?  ICK!  Well, we double checked, but they still won’t come up to clinic for a chronically ill, respiratory compromised little one, but they will let you cut in line (one hour waiting) and escort you straight to a room.  Thank you lab and thank you everyone that had to wait longer because of us.

How is the vomiting or emesis as the medical people say?  It continues but without blood.  Yeah, a step in the right direction.  She has vomited 5 times in the last 8 hours.  Ugh.  We’ll figure it out.  Other than that, she is our sweet, wonderful little baby!  We love ya Bell!

Bad Air Day

A couple of days ago, Bella was struggling.   She had the strangest symptom.  Besides the respiratory, she eyes were watering and her eyelids were bright red.  The nurse and I had no idea what was going on.  Then I walked outside.  It was like someone had set up a camp fire outside my house – there was smoky air everywhere.  What was no big deal to the rest of us, was a very big deal to our little Miss.  We turned off the AC (just sucking in the outside air) and put her on oxygen.  Her room air purifier was running the whole day.  Benadryl helped some.  Sweet thing.  Now the outside air is better and so is she.  One more thing to keep in my radar.

Another Day at TCH

Bella continues to vomit, although she is feeling better.  She looks good.  She has energy again.  She is playing.  She is beautiful.  But….she is vomiting and there is old, dried blood in it.  This worries me – a lot.  So for the 2nd time this week, Bella headed to TCH.

We had an interesting experience in the waiting room of the Special Needs Clinic.  We arrived a little early and were waiting .  A mother and her baby came out of a clinic.  This baby was so cute!  All of us (me, the nurse, and the EMT) were oohhing and aahing.  He was smiling and loving his Mama.  She must have heard us and looked up.  We are kinda hard to miss.  Our entourage is somewhat impressive.  Bella and all of her equipment on a gurney surrounded by four adults.  She looked up and said, “You don’t know me, but I read your blog.” What?  She quickly explained that she goes to church with my friend Dallas.  Oh!  What a small world we live in!  She came over and said hi to Bella and even noticed Ladybug.  :)Melissa, that little guy is just too cute!  Thanks for saying hi!

After some talking and examining, the doctor ordered an abdominal ultrasound.  Everything checks out there.  Even her liver, though large, looks good.  They looked at her spleen, gallbladder, kidneys, everything.  So they put her on an anti-nausea medicine.  It is Zofran – an anti-nausea  med that they give to people on chemo.   We are going to slowly work back up to normal feeds and see how it goes.  If the vomiting does not stop, she will have to be admitted for further testing – more invasive testing.  Ugh – get better sweet love.

Other than the vomiting, she looks great!  I was walking around, showing her doctor and nurses her x-ray from Wednesday.  She has never had such a good x-ray – ever.  Some people show off their kid’s pictures, I show off x-rays.  :)  I truly believe that the GJ button is the reason her lungs are so happy.  We aren’t aspirating every other second.  Her lungs can do their job.

Here is a video Jason made of our happy girl when we got home tonight.  She doesn’t look sick, does she?

Pictures with Joy and Sammi from yesterday.  They love Bell so much!

Feel free to skip this last bit.  I use this blog for many reasons.  Primarily to communicate with Bella’s family and friends, but also to store some medical information.  Lately, this is how Bella breathes when off the vent and sleepy – she sounds like a kid that has been crying for a really long time.  Something to ponder.  I’m afraid without the vent forcing her to breathe, she might have sleep apnea.  When she is really tired, she barely breathes over the vent.  RR in the 20s.

The Day at TCH

A stomach bug has hit the Turpin house.  I was running around yesterday trying to make sure that everyone was going to be OK while I spent the whole day at TCH with Bella.  Meanwhile, people were dropping like flies (including the nurse :( ) from the stomach bug around me.  By the time Jason got home, I was feeling a little yucky myself and about to panic.  My sweet husband volunteered to go downtown with Bella. Oh, yeah.  What a good man!

So this morning Jason, Bella, the nurse (a replacement because our normal Wednesday nurse is home sick), the EMT, and the paramedic headed off to TCH.  The guilt.  Oh.  My baby.  Ouch.  I should be there with her.  Guilt.  Oh.  I did send Jason with very thorough directions and medical notes - everything the nurses and doctors could need, lists of medications, dosages, vent settings, everything.  I had Jason call me in every appointment and we did those by speaker phone.

Pulmonology says she looks good.  Before her pneumonia, she could get off the vent up to 6 hours a day.  Now we are at 30 minutes to an hour.  Oh well.  So, no new orders.  We are going to allow her the time to get back to where she was as she is ready.  Her weight is now 6.8 kg – so still not back to where we were before the pneumonia.  He said we might want to look at increasing her feedings.  We’ll see.

Cardiology says her x-ray looks great!  Yeah!!  Her Echo doesn’t show much change from last time.  She is increasing her enalapril from once to twice a day.  She is watching her valves and her pressures.  The enalapril is helping – yeah.  The hope is that she stays OK.  If the leak or pressures get worse, it might mean another repair, but hopefully not for a few years.  There are more options she said as they get older and have more to work with.  The sad thing is I had taken her heart off my radar.  It was repaired.  We were done with that organ.  Not so.  Oh well. 

The contrast study showed that the G and the J are in the right place.  It also showed her refluxing the contrast they put in and she vomited.  Poor thing. 

They are home – what a day!

Sick on Holiday Weekends….

Why is it that Bella likes to get sick on holiday weekends?  We hustle down town and then sit all holiday weekend waiting for everyone to come back to work. 

Bella is pretty miserable.  Her heart rate is pretty high.  Her doctor said to switch everything to the J port (nothing through her tummy) otherwise she vomits.  She isn’t in any danger of dehydration because the J port is working and giving her formula, and she is having plenty of output.  :)  The doctor suspects (over the telephone) that her g is in the wrong place.  What we need is a contrast study (another one) with IR.  Two options she said.  We could go in to the ER or we could call on Tuesday and set up an appointment, hopefully for Wednesday.  We will already be down there, seeing pulmonology and cardiology.  Ugh!  Double ugh!

Guilt.  Guilt.  Guilt.  I know the drill.  We would sit and wait and wait, probably till Tuesday or Wednesday, down town, admitted, for the contrast study.  We would have to be seen by ER residents who are clueless about kids like Bell.  I just don’t want to do it.  And….the other half of my brain says….what if it isn’t the G tube after all, what if it’s something else?  Sigh.  Guilt.  I think it’s her belly. She has no fever, no new redness.  Unless her symptoms change, I think we’ll hang out here. Me rocking and bouncing and praying and poor Bella sleeping and fussing.  Poor sweet thing.

10 Months Old

Ten reasons we love Bella.

1. Her beautiful smile

2. Her piercing and intelligent  eyes

3. Her cute tongue

4. Her growl when she tries to talk around her trach

5. Her chubby thighs

6. All of that hair!

7. Her adorable hands

8. Her crooked toes

9. Her sweet, loving personality

10. Her drive to fight and her will to live month after month, week after week, hour after hour, minute after minute, second after second.

How we love you little one!  Happy Ten Month Birthday!

Sammi’s Post Part 2

Sammi made another movie that day that explains the vent better.  She calls it a trach, but oh well.  The first part is just her singing to Bella.  Yeah for Sammi, my future Child Life Specialist.  :)

Favorite Aunt

Between Jason and I's sisters, my girls have many Aunts to choose from for "Favorite Aunt." When we came home from the hospital this time, we came home with a GJ button rather than a G button. One feeds your belly. One feeds your intestines. One big difference is that you have to be on continuous feeds with a GJ button. That means there is always a tube connected to Bella's belly. I thought about this and came up with three problems that I needed to solve.
1. Clothes
2. School
3. Years of no food

In reverse order

3. Bummer! Seriously - I guess because I'm thinking about it, I have noticed how much we associate with food. 2 friends of mine in the last 2 days have posted about food - popcorn and cupcakes (yum!), but not something my Bell will be able to eat. What are the implications of not eating for years - oral aversion, big time. My OT (who happens to specialize in oral work, how blessed are we?) knows we have a lot of work ahead of us for many years. When Bella does finally get to eat her first piece of birthday cake - it will be a moment to truly celebrate!

2. My hope is that Bella will one day be off the vent and have the trach removed. My secret hope is next summer. My 2nd best hope is the following summer. Whatever happens, happens and we'll deal. But IF she can get off the vent and not have a trach by the time she is three, we will be talking about school. School! School with a child that is continuously feed...hmm....guess what? They make back packs for little ones to carry around their feeding pumps and feeding bags. Problem solved.

1. Clothes - I went through her dresser and realized that at our current size (3-6 months - wahoo Bella!) most of her clothes consisted of a onesies with something - for example, a onesies and cute matching pants. Before the GJ, we could bolus feed her and then remove the tube. We could pretty much keep her clothed. I thought about this. We could just keep the onesies snapped and then unsnap it when we needed access to her ports for meds. (Silly me to worry about these things, I know. There are more important things in life - but she is my baby girl and I want her to wear clothes and look nice.) My sister happened to stop by and we were discussing this. She (the artsy one (read Shelly, could never have figured this out - ever)) said, no problem. And she came up with the perfect solution right there on the spot. She scooped up all of her onesies and fixed them right up. The result - my baby can wear clothes again while eating and getting her meds. Wahoo! Thank you Asia! Did I mention that she did this all the same week she was packing for an international move with a newborn, a toddler, and a husband out of the country? So, sorry to all of my sisters and sisters-in-law, but ASIA, is the favorite aunt of the week!!

What did she do? She ripped out the side seam and stitched it, then sewed in some velcro circles. So now, we can just lift that part when we need access. Yipee! She did leave me some extra velcro circles to do her 6-9 month onesies - like that is going to happen. That is why this poor kid has Grandmas and Aunts. Her Mama is not the domestic goddess - those gifts were passed out to my sisters. :)

Sammi's Post

Sammi made this short documentary on Bella a few days ago when she was still feeling well. It's really cute. I think she has a great understanding for a ten year old!

Not doing too well

Yesterday she was off, restless, sleepy.  We tried to keep everything minimal to allow her to rest.

Today is worse.  Sleepy.  Crabby.  Her GJ site has been hurting her.  I don’t know what that is.  Spitting up gastric juices.  Poor sweet love.

I have a lot to post about Bella – fun stuff.  I’ll try to get those up soon when I’m not rocking my babe and doing CPT.

The Nap Nanny is Here!

Wahoo!  Good-bye aspiration!

 

We chose yellow to match her room.  Thank you Grandma!