December 23, 2010

A glowing report :)

Finally met with the urologist to review all the tests. Both the urodynamic and renal ultrasound this morning looked good!

He said, "He is exceeding my expectations. Truly."

Word for word quote there people!

We are to come back in 6-months for another ultrasound and bloodwork and keep up the "watchful waiting" to see how things progress.

This is the best urology/kidney report we have ever had. :))))

Ben has reached his limit. He has announced to everyone we have met, "I don't want to be heeeeeeeeeere."

I just shrug and say, "me either."

Liberty

Ben was super fabulously awesome for his ultrasound. He had the nicest (and cutest) radiology tech and she had Dora waiting for him on the TV. And that was all it took. He was perfect for the ultrasound.

Ben earned himself a toy from the gift shop and he picked out a flowery pink handbag containing a hot pink camera, pink phone, and pink flashlight. :)

We left the main hospital and are now at a branch called "The Liberty Campus" and it's a nice change. It's a quiet and peaceful place and we are grabbing a much-needed bite to eat while we wait for or clinic appointment with the urologist.

Considering he has been up since about 3:30a CST he is being an absolute doll. Ariana has been along for the ride and she has been a doll, too. Grandma Linda is with us and she's a doll. I don't think there is enough caffeine in this world to make the same be said for Ben's mama, though.

New watch

Second time was a charm. The urodynamics test went well and it looks like the results were pretty good. Major yay!!! The nurse doing the test, Lena, couldn't have been nicer.

Now we are waiting for an ultrasound of the kidneys. Ben has to wear an ID bracelet and he decidedly does NOT like his "new watch."

Chug-a-lug

Well, the first test was a bust. Ben drank over 8oz of juice yet his bladder was still empty. So now we have over 16oz to slam down and try the test again. Cheers!

The Talking Wall

It seems the one big thing Ben remembers from our last trip here is the "talking wall" of carnival fun. He was elated to find it and has been running all around pushing the buttons.

We are waiting for his first test of the morning. Here's hoping he complies...rather nervous about that as he spent the whole 3-hour ride here begging to "go back to Namma Linda's" house and how he didn't want to go to the doctor.

December 21, 2010

Hallmark 2

Woops...sent that last update before I was done. :)

The orthopedic surgeon basically said Ben has all the "hallmarks" of thoracic insufficiency - hemivertebra all on the same side, fusions, fused ribs, missing ribs - yet DOES NOT have thoracic insufficiency syndrome. His lungs and heart look perfect. Perfect! Lungs are able to inflate to a normal capacity and are equal size, heart in the right location and right size. It's all good stuff.

He has at least three hemivertebra and two of them are fused on one side to other vertebra. The fusions are actually a good thing as this means there are no growth plates on one side of the hemivertebra that would cause the bad vertebra to grow and make the curves worse. One of the hemivertebra is not fused, however, and is in a particularly bad spot but it looks okay now and hopefully it will stay that way. It's bad that they are all on the same side of the spine, but again, things are stable and the curves are pretty small. He has several ribs which are fused together but then gap and make room for the lungs.

He basically said if you read off the list of defects or look at the x-rays it is a mess and you would assume much worse, yet with a decently straight spine and nice, big lungs the sum is greater than the parts. That's our Ben!

The ortho said he wants to see Ben again in 6-months which is more frequently than we have been seen by our local...but since we are in Cincinnati for urology every 6-months anyway, big deal right?

He said it's quite possible Ben will have x-rays every 6-months or so for the rest of his growing years and that's it...nothing else. :)

We go back to Cincinnati again on Thursday for a bunch of tests and an appointment with his urologist. Hopefully the report then is just as jolly.

A Hallmark Boy

Ben had an appointment today with a new orthopedic surgeon.

The appointment started out with Ben outright refusing to bs weighed, so once again I had to stand on the scale holding a kicking and screaming boy in my arms and then get myself weighed. Only a mother's love!

Maybe that got it out of his system because he was perfectly fine for the x-rays.

December 13, 2010

Yummy on her cheeks

Ariana has some really lovely cheeks these days and Ben loves giving her kisses.  This morning we were talking about how great her cheeks are and her mama declared, "Ariana's cheeks are delicious!"

Ben leaned over and gave her several kisses and remarked, "Mama, I don't taste the yummy on her cheeks."

Hee hee.  Happy Monday!

December 02, 2010

November 24, 2010

:)

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The D Word

They are saying the "D" word around here now so it's looking likely we will be home for Turkey! :)

There was an all-hands-on-deck (or rather everyone in our room) meeting with I swear every specialty we've seen here - GI, neurology, ENT, feeding/speech. The consensus is that Ariana has and delay in the maturity of her medulla - a part of the brain that coordinates eating and breathing. Although more common in premature infants this does happen with full term babies sometimes, too. This dis-coordination can lead to ALTEs (apparent life threatening events). She is growing out of it and they believe she will continue to do so. As long as we keep a close eye on her it should be safe to bring her home.

(!!!!!!!!)

An interesting thing...the neurologist said often babies with this delay will present with much more severe symptoms and as a result more dangerous complications. However, they believe breastfeeding has helped reduce the severity because babies typically coordinate eating better this way. Then GI chimed in saying that breastfeeding has also helped in managing her episodes of poor coordination because the close nature of feeding this way is like "nature's monitors."

The snooze report

We don't have the official read back on the sleep study, but the resident read it all and says Ariana did not have any apnea episodes. Yay!

She had a couple of abnormal instances where she would not breath as much and then her O2 saturation would drop, but it wasn't extreme or anything to be alarmed about.

Good gut!

The official radiology report from this morning's upper GI study is back and there are no abnormalities!

Also, the aspirated barium has cleared her lungs and her lungs still sound clear.

No word yet on when the sleep study report will be ready.

Realllllly good news about that GI imaging! Yay! :)

And yawwwwn. So tired! They made us keep the lights on all night so they could watch Ariana on video camera.

Yawn

November 23, 2010

Sleepytown

We have checked into Sleepytown! Yep, they got our girl into the sleep clinic. I tell ya this place is creeeeeeepy! It's in an old part of the building and all of the furniture is old and icky. The tech, I kid you not, has at least a dozen piercings. I will try to snap a pic of Ariana in the morning because words cannot describe all the wires attached to this baby.

Now to figure out how I'm gonna sleep knowing there are these creepy people watching me on video camera.

The Ariana Report

Phew!  Busy day!  I can't believe this is the first chance I'm getting to sit down and type an update here.  I'm at that point of inpatient stay when my mind has turned to mush and I can hardly hold a thought for more than 2 seconds.  My brain has checked out and I'm done!  So, we will see how coherent I can make this...

I listened in on morning rounds.  They seemed to be under the impression Ariana aspirated on 1 ML of barium suspension.  I am absolutely positive it was more than that and I told them so.  Regardless, her lungs have been sounding "clear as a bell" and she had a chest x-ray this afternoon to see where the barium is now.  Don't have the results back from that yet.  They want Ariana to have a sleep study done and hopefully that will happen tonight.  I'm not holding my breath, though. (Ha. Ha. Ha.) They are going to try to figure out how to make her Prevacid prescription more easily fill-able by the pharmacy.  As it stands now there are only two pharmacies in our area able to make the "special compound" and neither is really that close. 

The Sleep Study residents came by to do an initial evaluation and to determine if Ariana is stable enough to participate in a study.  She is.  Now it's a matter of logistics to see if they can get her on the schedule and where to do it and such.

The Feeding/Speech Specialist came by to do another assessment and once again said she appears to be a great eater.  Ariana, of course, does her very best eating for the lady and doesn't do any of her frequent gurgling and coughing and junk.  Go figure!

The ENT team came and evaluated her and decided they wanted to do a scope to look for any physical defects like clefts.  They used a long tube with a light and camera at the end, put it through her mouth and down her throat.  They didn't find any abnormalities, but did say her vocal cords are enlarged and irritated and she produces an abnormal amount of secretions and is most definitely experiencing severe reflux.  I swear there were about 50 people in the room watching the video of our girl's throat.  Who the heck knows who all of them were, but even our nurse was surprised at the number of people. 

So, it's 8pm and we are still waiting to see if there are any cancellations in the sleep clinic.  I'm really hoping we can get this done tonight as the attending seems to strongly feel this test will give us the best information.

For those of you keeping score, we have seen -
Gastroenterology
Neurology
Sleep Disorder Specialists
ENT
Feeding/Speech Specialist

November 22, 2010

So popular

Ariana is so popular they just can't get enough of her around University if Chicago...so they are readmitting her. Again.

We are waiting for a bed now. I guess aspirating on 5ml of barium isn't good?

At least this time I packed a bag! Oh well.

Upper was a downer

Well, the upper GI test today was a bit of a downer. Ariana aspirated (inhaled) the barium contrast instead of swallowing making "the risks of continuing the test too great" as the radiologist put it.

Not sure what it means or what is next.

We are waiting to see the feeding specialist again and I guess we will see what she thinks and then go from there.

Ariana is cute as heck today and giving out extra smiles. She had quite a fan club in the waiting room.

November 21, 2010

Discharged!

Just signed the papers so it's official...Ariana is "knitting socks" today! :)

We will come back tomorrow for outpatient testing and will have another night in the sleep study clinic at some point, but for now we are outttttttta here.

Not a head case

Neurology has stopped by a couple of times this morning. Apparently they are bored. :) Everything looks good to them so no MRI for Ariana.

They also want a consult with pulmonology. Soooo we will see how that affects "knitting" but otherwise we are good to go and then come back tomorrow for more tests.

They also said she is the cutest baby on the floor.

(Duh.)

Bloodwork normal!

Ariana's bloodwork labs are back and are normal. Yay! We have officially ruled out a calcium/metabolic issue.

The early bird catches the worm...or, if in a hospital, the early bird catches the rounds. I am up, dressed, and ready to stick my nose in morning rounds which is probably the most productive activity there will be today.

I want to make sure they know about yesterday's breath holding, find out if they checked her iron in those labs (I cannot imagine they didn't, but doesn't hurt to check), see what we can do to make this swallow study ideal, and generally harass the residents. :o)

November 20, 2010

Brazilian Trick

There are a couple of things we have noticed...

1. The feeding specialist says Ariana has a very overly-sensitive gag reflex

2. Ariana is a breath-holder. 

The former we learned when the feeding specialist tried to demonstrate how certain she was an 8-month-old could not possibly have formed such a breastfeeding preference.  The latter was an exciting thing we learned during two failed blood draws. 

If it hadn't involved our child not breathing it would have been comical.  A nurse from the PICU came over to try to do this blood draw and with her came another nurse along with our nurse.  So it's Ariana, me, and three nurses for this blood draw.  As soon as she starts poking around with the needle Ariana turned bright red, opened her mouth and let out a loud howl and then nothing...and then more nothing...and then even more nothing.  It was like she was frozen in that painting "The Scream."  Then, as if a conductor had cued it, all four of us said in unison, "BREATHE!"

And she did. 

And then she held her breath again.  And did it two more times. 

After all that we still didn't get a successful stick.  A few minutes later a NICU nurse showed up and said she had a special "trick" she learned in Brazil.  Turned out her trick worked and Ariana didn't even seem to notice she was being bled.

I'm kinda loving Brazil right about now.

Ariana's Adventures

As you can see from the pictures, Miss Ariana is having a good old time (the two failed blood draws notwithstanding). She is her usual cheery, happy self. She was NOT her usual great-sleeper last night, however, and her mama is sure hurting for it today. But, all things considered things are going well.

Just to give a better idea about what has been going on...

Since Ariana was born she has been having these little episodes where she turns a little blueish when she is eating. Her eating is generally more noisy and messy and all-around less rhythmic than our other kids. She will eat just fine for a bit with a regular, rhythmic suck-breathe / suck-breathe pattern but then start just sucking and not breathing, then turn blue and go all limp. It takes a while to get her to come out of it and she does so slowly. This was happening with almost every feeding for a while there, but has become less and less frequent as, we believe, she and I have figured out how to intervene when it happens. Basically if I am paying attention when she starts just sucking and not breathing I can just stop the feed and she will be fine. But, if I'm distracted (let's say by a certain preschooler and toddler who have discovered a pair of scissors and are playing hair salon...) and I don't intervene in time she will turn blue and limp.

This happened before she was discharged from the delivery hospital but they didn't seem too concerned. We brought the issue up to the three different pediatricians she saw for her newborn check-ups and they had varying levels of concern. One prescribed a reflux medication thinking that maybe she was refluxing and aspirating (bringing it into her lungs). Every time we gave her the reflux medication - twice a day - she would vomit so it eventually proved pointless. We brought her to the emergency room one weekend when we had enough. They were initially concerned she might have a heart issue so they did a chest x-ray and EKG which both looked normal. Her pediatrician eventually decided further evaluation was necessary and wrote an order for an echocardiogram and recommended we consult a gastroenterologist. The echocardiogram was done last weekend and we got the results this week - all was normal. This Friday was the consult with the gastroenterologist.

The GI was concerned. Moreso than anyone else we had consulted prior. Ariana doesn't present with the usual symptoms of reflux as she doesn't spit up an usual amount, isn't fussy, and isn't worse at night. However, it's possible she's a "happy spitter" and is "silently aspirating." Or there could be something else going on entirely...which is what the gastroenterologist seems to think. I have to say I was more than impressed with the proactiveness of this doctor. She made several phone calls, consulted several colleagues, and brought in a feeding specialist to do an evaluation all in one afternoon. Ultimately she said she didn't feel comfortable sending Ariana home without ruling out some more serious issues. So that brings us to where we are now.

She has been on the monitors for almost 24-hours and we have yet to catch a "blue spell." And being on monitors is pretty much all that has happened since she was admitted. Not surprising since this is a weekend and hospitals are relatively vacant on the weekends. It's usually my worst nightmare to be in a hospital on a weekend, but we have had a really good experience so far. All of our nurses have been really great and attentive and...gasp!...I even really kinda sorta well LOVE the resident. I can't believe I just typed that! But, really, we have lucked out with a really sharp, sociable, kick-butt and like-able resident.

The attending suspects any one of several more common possible causes of these blue spells:

Reflux which is being aspirated
Laryngospasm
Immature Neurological Function
Sleep Disorder
Tracheoesophageal Fistula
Other defects

Fun! Or not. What's really hilarious (or not) is tracheoesophageal fistula is the TE part of VACTERL Association - the name for the cluster of birth defects our Benjamin has. Is it bad that I rolled my eyes when the attending mentioned TE fistula as a possibility? Oh well if it is!

Here is what is on the docket:
Blood test to check for a metabolic disorder (something about calcium can cause laryngospasm?)
Neurology Consult and possible MRI (something about the hippocampus?)
Possible discharge on Sunday
Upper GI Series test on Monday
Sleep Study
Prescription for reflux meds

Did you catch that "possible discharge on Sunday"? :)  But, we all know what happens when you start talking discharge...(for those of you who don't know, when you start talking about it that just pushes the discharge date further and further away.)  So, let's call it "knit some socks" instead.  Boy that would be nice if Ariana could knit some socks tomorrow don't ya think?

We have spent most of today waiting to find out when her Upper GI Series test could be done, so she has been NPO (now allowed to eat) and then not-NPO and then NPO and then not...which pretty much translates to a day of "don't feed her after midnight, okay you can feed her until 6, never mind don't feed her after 8, now it looks like you can stop feeding her at 11, etc, etc, etc." Then it was ultimately decided not to do the Upper GI on the weekend because the attending would rather do it when the better-skilled people are around on Monday. 

Why hello there...




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November 19, 2010

The Blues

We are singing a bit of the blues over here. Miss Ariana has been have some issues since she was born...namely an oh-so-exciting little thing she likes to do when she is eating - she turns blue and goes limp. We took her through a gamut of cardiac tests - EKG, xray, and echocardiogram - all came back fine. So, thinking it might be a reflux issue we saw a gastroenterologist today. The GI was concerned. Concerned enough to not feel comfortable sending her home, so she is admitted to the hospital for observation and tests now.

They placed an NG tube to check her nasal passages and have it ready for some tests. She has a swallow study, upper GI, bronchoscopy and MRI planned.

She is otherwise perfectly happy and healthy and everyone agrees this could well be just a little delay in development or some uncoordinated eating.

It's certainly weird being back at this hospital where we were for Ben's neurosurgery.

Have you ever seen an ng tube look so cute??? :)

November 12, 2010

PS - crafts

So you want to know what on earth our son is wearing in the previous photo????

Yep, that's a grocery bag with a paper plate stapled to it...or, as Ben would tell you, it's an astronaut spacesuit.

And, yes, this really truly IS the upper limits of his mama's crafting abilities. Really. Seriously. :/

So big

Ben went to wash up after lunch and called for me to come look at something "that is going to be soooo exciting for you!"

He proudly showed me how he can now reach the faucet from the step stool...instead of by climbing on the sink. So cool that he recognizes his own growing-up!

Speaking of which...and I hate to type it for fear of jinxing it AND because it brings me to tears...he has been wearing underpants all week. Yep. Our boy who has had 4 surgeries on his tummy and has nerve damage is being his usual amazing self again. When will he stop surprising us with the things he can do???? (Please let it be never.)

October 27, 2010

The Grandma Dee Song

Here is a little song Ben made up at dinner the other night - The Grandma Dee Song!

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October 21, 2010

Presents!

Many thanks to Aunt George and Uncle Rick for the exciting box full of presents that arrived at our house last night. The kids had a blast opening everything and playing. :)




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October 11, 2010

The sister strikes back

videoAfter a lifetime of having toys grabbed away the little sister has started an offensive campaign...against baseball. :)