On Monday Audra's GI doctor called to chat. I knew she would...she is so good to us!
The biopsies from Audra's endoscopy and colonoscopy showed some improvement...
there is less inflammation and less atrophy throughout her GI tract. But visibly, her intestinal mucosa is still inflamed and very friable. To help with this she was started on Prilosec, an acid blocker medication. They were able to determine that Audra can't absorb sugars normally. Exactly which sugars...we still need to figure out (there's lactose, sucrose, glucose, fructose, and probably more). The next step is hydrogen breath testing to determine which sugars Audra can't absorb. I don't know a lot about this type of test, so I have some homework to do :)
The plan is to have the 3 hour breath test done, and on the same day meet with the dietitian and then her GI doctor. Unfortunately, we are getting very close to needing to trial tube feedings. I have tried for so long to avoid this for Audra. She actually does quite well with the naso-gastric tube itself (she has had them a few times while in the hospital). I just can't imagine having to limit her oral intake (if she needs a special diet), and don't want to cause her to lose interest in eating food.
My girl loves her food something fierce!
And she can eat...there's no denying that.
But the bottom line is...nutrition is important...very, very important. I know this, of course. And right now, after 10 months of trying and trying, we still haven't been able to help her grow. She is six and a half years old and weighs 24-25 lbs.
Audra deserves every chance to be healthy and have catch up growth and development.
And so we will do whatever it takes.
Thursday, March 6, 2014
Saturday, March 1, 2014
our new hockey player
Today is...
USA Hockey's
National Try Hockey for Free Day
...and our figure skating girl, Maura, wanted to give it a try.
Or, more accurately...
her daddy really, REALLY wanted her to give it a try!
The ice rink where she and Aidan have been taking lessons/playing hockey for the last 4 years participated in the event today. They had a great program put together for the kids. Each child got a USA Hockey jersey, over an hour of instructional time on the ice, and a fun bag of treats (certificate, stickers, hockey puck, public skating pass and more)...all for FREE!
In the locker room getting dressed:
She was able to wear all of Aidan's equipment,
the same equipment he has been wearing since he started playing hockey...
3 years ago!!!
Which inspired daddy to take Aidan out this afternoon to get some much needed new equipment
(in hopes that Maura will soon need his old equipment!)
Dressed and ready to play:
Excited but a little nervous too...
Relaxed and enjoying herself,
and realizing she really likes this hockey thing...
Love the little mini net:
I'm not sure if she'll continue on the figure skating path or switch over to hockey.
But she'll be fabulous at whatever she chooses.
Friday, February 28, 2014
All better
She's walking,
She's talking,
She's playing.
Audra is a new girl compared to 24 hours ago!
She slept very well last night and woke up this morning with an interest in food :)
She had a few bites for breakfast,
and kept it all down,
by lunch time she was ready.to.eat!
After lunch she was "talking" up a storm and dancing all around.
My girl was ALL BETTER!
All the nurses couldn't believe it. And all the staff who watched me do laps with Audra in her stroller the last two days were amazed at her little (ok, BIG) personality. They actually said to me...
"Oh my, she can talk?!"
Lesson learned: you can't rush Audra...she does things in her own sweet time!
When she's sick...she's SICK.
And when she's better...she's BETTER.
Just like that!
We came home this evening, and right now she is happily playing with Maura and Charlotte like nothing ever happened.
She's talking,
She's playing.
Audra is a new girl compared to 24 hours ago!
She slept very well last night and woke up this morning with an interest in food :)
She had a few bites for breakfast,
and kept it all down,
by lunch time she was ready.to.eat!
After lunch she was "talking" up a storm and dancing all around.
My girl was ALL BETTER!
All the nurses couldn't believe it. And all the staff who watched me do laps with Audra in her stroller the last two days were amazed at her little (ok, BIG) personality. They actually said to me...
"Oh my, she can talk?!"
Lesson learned: you can't rush Audra...she does things in her own sweet time!
When she's sick...she's SICK.
And when she's better...she's BETTER.
Just like that!
We came home this evening, and right now she is happily playing with Maura and Charlotte like nothing ever happened.
Thursday, February 27, 2014
taking the long road
Audra never seems to do things the easy way...for herself or her doctors!
...never by the books
...never the usual course
...always her own way, which is often the difficult way!
Poor girl, one of these days she needs to give herself (and her doctors) a break!
Today Audra continues to not tolerate having ANYTHING in her belly. Not even sips. It all comes back up. And she has spent most of the day sleeping...in her stroller of course!
She is not walking.
She is not talking.
She is not playing.
At first there was some concern that she might be having a complication from her procedure yesterday. Big, bad things...like bleeding or perforations.
Thankfully, all of those things have been ruled out today after x-rays and ultrasounds.
Clinically, she appears to have an ileus (sleepy intestines) just like she had after her malrotation surgery in November. That time it lasted for NINE days. We are praying that this time her tummy will wake up and cooperate in just another day or two.
For now, she has a tube in her nose draining her stomach. And they are giving her medicines in her IV to prevent nausea and protect her stomach lining, which looked so inflamed during the endoscopy yesterday.
All we can do now is wait.
Hoping to get the biopsy results tomorrow...which may make this whole process worth it in the end.
Fingers crossed.
...never by the books
...never the usual course
...always her own way, which is often the difficult way!
Poor girl, one of these days she needs to give herself (and her doctors) a break!
Today Audra continues to not tolerate having ANYTHING in her belly. Not even sips. It all comes back up. And she has spent most of the day sleeping...in her stroller of course!
She is not walking.
She is not talking.
She is not playing.
At first there was some concern that she might be having a complication from her procedure yesterday. Big, bad things...like bleeding or perforations.
Thankfully, all of those things have been ruled out today after x-rays and ultrasounds.
Clinically, she appears to have an ileus (sleepy intestines) just like she had after her malrotation surgery in November. That time it lasted for NINE days. We are praying that this time her tummy will wake up and cooperate in just another day or two.
For now, she has a tube in her nose draining her stomach. And they are giving her medicines in her IV to prevent nausea and protect her stomach lining, which looked so inflamed during the endoscopy yesterday.
All we can do now is wait.
Hoping to get the biopsy results tomorrow...which may make this whole process worth it in the end.
Fingers crossed.
Wednesday, February 26, 2014
tues/wed update
Tuesday afternoon:
Almost as soon as we set foot into her room, the nurse put hot packs on her arms and hands...and Audra knew exactly what was coming next:
IV in...
NG tube in...
Prep started...
Audra wore herself out fighting it all...
Tuesday evening/night:
throw up,
hurry to the potty,
clean Audra up,
change the bed sheets,
get her back to sleep...
then repeat...
and repeat, and REPEAT!
Every 30 minutes...for almost 9 hours!
Finally, at 1:30am they said Audra had had enough...and the prep was stopped. She and I slept like rocks...until phlebotomy arrived at 6:00am to draw her blood.
Wednesday morning:
The morning passed quickly, although I had forgotten to prepare myself for the fact that I wouldn't be able to eat in front of Audra...or leave her side...for the 24 hours from our arrival Tuesday until she went into the OR on Wednesday. So, by 7:00am on Wednesday I was drooling at the very thought of snacks from the vending machine in the OR waiting room.
Audra was her happy self as she waited for her turn. Happy as long as she had her flamingo-bunny, her pinwheel, and her silver glitter boots on.
She fought the anesthesia like a bear this time. Usually I hold her, the anesthesiologist puts the mask to her face and she drifts off to sleep in my arms. But today she wasn't willing to go without a fight. My little tough cookie :)
She came out of the OR with a NG tube drain in place (just like the one she had for a week and a half after her malrotation surgery in November). This was not something I was expecting and it caught my attention right away. Turns out Audra had more bleeding than expected during the procedure so her GI doctor put the tube in as a precaution (aka...she doesn't trust Audra, rightly so!). And because she is so cautious with Audra she wanted her to stay another night, just to be safe. They will check her hemoglobin a couple times to make sure she doesn't have any further bleeding at the biopsy sites.
As far as results: they found the same areas of inflammation and friable tissue that she had on her last scope in May. Something they found, which they had not seen before was "bumpy areas"...which they biopsied. "Bumpy areas"...the GI doc was pretty non-committal about what these could be until the biopsy results are in. Hopefully we'll have results Friday or Monday.
Wednesday evening/night:
Turns out the GI doctor's intuition was right. Audra's been having a rough time. She can't manage to keep anything down :( She was so anxious to get something to eat...the minute she returned to her room! But as soon as she takes a sip or a bite she gags and wretches. Then she throws up and her tummy feels a bit better so she tries again...but the same thing happens. Over and over. And she is sooo disappointed. She WANTS to eat, but her little tummy just won't cooperate. Her sad little face breaks my heart. So far the only place she hasn't thrown up is in her stroller. So now she believes that if she is in her stroller she won't throw up. And she wants to keep moving. We have done so many laps around to unit we have had nurses, nursing students, volunteers, and even strangers offer to push her for a bit to give my legs a break! And when I finally said no more walking she still insisted on sitting in her stroller, even as she fell asleep:
Almost as soon as we set foot into her room, the nurse put hot packs on her arms and hands...and Audra knew exactly what was coming next:
IV in...
NG tube in...
Prep started...
Audra wore herself out fighting it all...
Never underestimate her strength, despite her petite size!
Tuesday evening/night:
throw up,
hurry to the potty,
clean Audra up,
change the bed sheets,
get her back to sleep...
then repeat...
and repeat, and REPEAT!
Every 30 minutes...for almost 9 hours!
Finally, at 1:30am they said Audra had had enough...and the prep was stopped. She and I slept like rocks...until phlebotomy arrived at 6:00am to draw her blood.
Wednesday morning:
The morning passed quickly, although I had forgotten to prepare myself for the fact that I wouldn't be able to eat in front of Audra...or leave her side...for the 24 hours from our arrival Tuesday until she went into the OR on Wednesday. So, by 7:00am on Wednesday I was drooling at the very thought of snacks from the vending machine in the OR waiting room.
Audra was her happy self as she waited for her turn. Happy as long as she had her flamingo-bunny, her pinwheel, and her silver glitter boots on.
And...YES...she wore her silver glitter boots all.the.way into the OR :)
She fought the anesthesia like a bear this time. Usually I hold her, the anesthesiologist puts the mask to her face and she drifts off to sleep in my arms. But today she wasn't willing to go without a fight. My little tough cookie :)
She came out of the OR with a NG tube drain in place (just like the one she had for a week and a half after her malrotation surgery in November). This was not something I was expecting and it caught my attention right away. Turns out Audra had more bleeding than expected during the procedure so her GI doctor put the tube in as a precaution (aka...she doesn't trust Audra, rightly so!). And because she is so cautious with Audra she wanted her to stay another night, just to be safe. They will check her hemoglobin a couple times to make sure she doesn't have any further bleeding at the biopsy sites.
As far as results: they found the same areas of inflammation and friable tissue that she had on her last scope in May. Something they found, which they had not seen before was "bumpy areas"...which they biopsied. "Bumpy areas"...the GI doc was pretty non-committal about what these could be until the biopsy results are in. Hopefully we'll have results Friday or Monday.
Wednesday evening/night:
Turns out the GI doctor's intuition was right. Audra's been having a rough time. She can't manage to keep anything down :( She was so anxious to get something to eat...the minute she returned to her room! But as soon as she takes a sip or a bite she gags and wretches. Then she throws up and her tummy feels a bit better so she tries again...but the same thing happens. Over and over. And she is sooo disappointed. She WANTS to eat, but her little tummy just won't cooperate. Her sad little face breaks my heart. So far the only place she hasn't thrown up is in her stroller. So now she believes that if she is in her stroller she won't throw up. And she wants to keep moving. We have done so many laps around to unit we have had nurses, nursing students, volunteers, and even strangers offer to push her for a bit to give my legs a break! And when I finally said no more walking she still insisted on sitting in her stroller, even as she fell asleep:
Hoping that tonight brings some peaceful sleep for my little love and that tomorrow morning brings a more cooperative belly.
Monday, February 24, 2014
tuesday/wednesday
Tomorrow Audra will be admitted to CHOP. Wednesday is her scheduled endoscopy/colonoscopy in the OR under anesthesia. She is being admitted the day before for the bowel prep and IV hydration. I am not sure what I am hoping for with this procedure...I suppose any news will be good news...as it will hopefully point us in the right direction of diagnosing and treating her malnutrition and bouts "tummy troubles" (to spare you the details). I have been wanting the GI doctor to do another scope for many months now. Audra's first scope, which was done during her admission in May, showed some abnormalities...inflammation (gastritis/colitis) and villi blunting (similar to but not exactly the same as seen in Celiac disease). But it was difficult for GI (and the pathologists) to determine what the problem/diagnosis was. Now that her GI doctor is telling us that tube feedings are a real possibility for Audra, I was pretty insistent that they do another scope before heading down that road.
Turns out Audra has impeccable timing...
She has been struggling with ear infections since mid January. Friday I took her back to the pediatrician for her follow up appointment. And the infection still hasn't cleared up. Now, she is on her third round of antibiotics (in addition to the daily antibiotic she takes for her kidneys). So, 4 antibiotics in 1 months....praying that she doesn't get the C-diff infection again! Not to mention that antibiotics are rough on her sensitive tummy...causing her not to eat as well, and spend too much time in the bathroom...which inevitably leads to weight loss. Friday she was down one pound from two weeks prior. Not what my little peanut needs! So...I called her ENT doctor as soon as we got home from the pediatrician...he will see her first thing Tuesday morning before she is admitted and he may join her in the OR on Wednesday to get a better look at what's going on and do whatever he needs to.
Kind of like a 2 for 1 deal.
Have to keep a positive spin on it :)
Turns out Audra has impeccable timing...
She has been struggling with ear infections since mid January. Friday I took her back to the pediatrician for her follow up appointment. And the infection still hasn't cleared up. Now, she is on her third round of antibiotics (in addition to the daily antibiotic she takes for her kidneys). So, 4 antibiotics in 1 months....praying that she doesn't get the C-diff infection again! Not to mention that antibiotics are rough on her sensitive tummy...causing her not to eat as well, and spend too much time in the bathroom...which inevitably leads to weight loss. Friday she was down one pound from two weeks prior. Not what my little peanut needs! So...I called her ENT doctor as soon as we got home from the pediatrician...he will see her first thing Tuesday morning before she is admitted and he may join her in the OR on Wednesday to get a better look at what's going on and do whatever he needs to.
Kind of like a 2 for 1 deal.
Have to keep a positive spin on it :)
Friday, February 21, 2014
a whole new world!
Audra got her much anticipated glasses today :)
When I first put them on her she just stood there...looking all around...taking everything in.
Oh, how I wonder what was going through her sweet little mind.
She is farsighted, which means she can see things that are far away, but everything up close is blurry for her.
Now, with her glasses on, I am so excited for her...
...to see the food on her plate
...to see what she is coloring on paper
...to see the pages of books I read to her
But most of all, I am so happy that she can now see clearly the faces of all those who love her so dearly.
I was worried about how we would fit both her hearing aids and the glasses on her petite little ears...but she is managing just fine. In fact, she did NOT want to take her glasses off tonight. I had to encourage her, promising her that she would get to wear them again tomorrow. And everyday after that!
As of today...Audra can hear AND see better!
It must be a whole new world for her!
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