Ella's follow-up appointment.

This is a bit of old news now, but I'm just now getting around to blogging it. Back on Nov 5th, Ella had her post-op follow-up at Hopkins. They performed a fairly detailed check-up of her heart, and the placement of the device using both echo- and electro-cardiograms. The Amplatzer duct occluder is in-place, it's not moving, and it's not obstructing normal blood flow anywhere. To quote the cardiologist that did the procedure "It's hers now, she can keep it."

At this point, we've been given some very minor restrictions (i.e.: no dental work for 4-5 months due to infection risks.) and we're scheduled to follow-up with our local cardiologist in a year.

In general Ella has been doing really well. The day after the procedure (Thursday) she was still pretty sleepy, but she went back to school the day after that (Friday), and had a more-or-less normal day. She had some minor tenderness for a bit over a week at her hip where they inserted the catheters, but this went really well.

All is well.

Just to let everyone know, Ella is home and doing very well. She's got a good appetite, when we got home last night she immediately spotted a bowl of goldfish crackers, walked over and stuffed a handful in her mouth. She's been sleeping a lot, but when she's up and about she is acting like her usual happy self. She doesn't seem to be in any serious pain, but was a bit fussy about me changing her bandages this morning. Even that was a fairly mild protest; she was whining about it, not crying or screaming.

At this point, I expect she'll be OK to go to school on Friday, although you never know for sure.

Ok so we are going home

Things went well and the doctor has decided not to keep ella overnight


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Proceedure done

The proceedure is done and went very well. Still not positive she will stay overnight, but it is likely.


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They are using the amplatzer

They have decided to use an amplatzer, which is the larger device and Ella will likely be staying overnight


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The are starting

Ella is fully under and the catheters are in place. Next step they will inject dye into her heart and take xrays to measure the pda and determine what device to use. This will take about 1 hour.

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Waiting waiting waiting

We are now waiting arround the lobby. The nurse will call us 3 times with status updates as they proceed. I'll be posting those as they come.


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In anesthesia

Ella is currently in anesthesia. She is only mildly sedated and will be slowly taken deeper over the next hour or so.

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On our way.

We are on our way to the hospital. Assuming pre-op doesn't show she is getting sick, the heart proceedure will be today.


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Surgery delay, potty training, and general updates..

Ok, first, Ella's surgery (that was supposed to go off last Weds) got rescheduled for October. Earlier last week she came down with a cold, and that added unnecessary risk to the surgery. (mostly because they need to put a tube in her throat during the procedure, and that doesn't mix so well with coughs and inflamed throats).

On the progress front, this weekend Ella spent all of her awake time in regular underwear, and had no accidents all weekend! She's actually very happy to be in underwear now, so it looks we're breaking through the PT barrier that the flu put in our way last winter. (we almost had her daytime PTed, but then a flu or flu-like illness struck, and Ella became afraid of underwear.)

On the speech front, Ella continues to chatter babbles at us, and continues to be quite prolific in it. She'll now say "I" and "Hi", although the distinction between the two is blurred. She'll also occasionally form "Doga" for Dog. Her babbles include "Da", "Dooga", "Tka/Tooka", "Ga", "Ra", "P", "Ba", "Ha", along with all (or nearly all...) the vowel sounds.

Anyway, just wanted to get a little news up on the blog, hope you're all well!

Heart procedure - scheduled for Sept.

MentalMother, in a bit of role reversal, posted a very lengthy and detailed description of all this, so to continue the reversal, I'm going to post a brief note.

Ella is now scheduled for a procedure to correct her PDA. As heart procedures go, this is a relatively minor one, and overall is similar to the way they put in stents for heart disease, but this is closing an artery near the heart rather than opening one.

The whole thing will take place as a non-surgical cardiac catheterization type of procedure on September 16th. She will be under general anesthesia for this (good luck getting a 3 year old to lay still on a table for 3 hours, much less while poking around the heart!). During the procedure they will perform some detailed x-rays with contrast enhancers, and decide what size or type of device to place in her heart to close the ductus. If the ductus is small enough, they will use an embolyzation coil to close it, in which case she will likely go home late the same day as an outpatient. If it is larger they will use an Amplatzer duct occluder, in which case she will say overnight for observation. (note: neat videos on the Amplatzer).

Either way she should be back in action after a couple of days.

Overall, it's good news for us that we can use the catheter procedure, as this eliminates the potential need for conventional heart surgery.

Cardiologist results..

As her mother already mentioned, Ella visited the cardiologist today.

Again they did an EKG (which she screamed at me through because she did not want to lay still) and an echocardiogram (which she was fairly good for). The results are fairly good, or at least as expected. (edit - fixed electrocardiogram to echocardiogram)

Her PDA is still present, but her left ventricle is now a tiny bit enlarged, but there is no damage to her heart or lungs. The enlargement is too slight to be harmful anytime soon, but it is a sign she's going to need a procedure to close the PDA at some point. We've been referred to the doctor that performs the cauterization, and he'll take a look at her. If he deems she's a good candidate for the catheter procedure, she'll have it this year, or the next, depending on how he feels about her size. If she's for some unusual reason not a good candidate, she'll have conventional surgery sometime this year.

This is all pretty much what we expected based on last year's visit.

Anyway, just wanted to share the news that Ella's still doing OK, but will be getting a procedure sometime in the next 18 months or so.

signs and a heart full of love.

I've updated Ella's list of sign language signs (google docs link in links section), and we're now up to 141 signs that I've documented. She's also getting pretty reasonable at 2 new colors, black and brown.

Also this Wednesday, Ella has a cardiologist visit to check on her PDA, and to see if she's going to need a corrective procedure for that. Last time she saw the cardiologist, they told us it was likely to be necessary at some point, but it wasn't anything significant, but that was a year ago. Fortunately it is likely to be a catheter procedure, not a surgical one, if it is necessary at all.

Regardless, wish us luck.

sick again...

Well, it looks like Ella's going to be missing school tomorrow.

Last night we found she had a 102.7 degree fever. This one reacts very well to ibuprofen or acetaminophen, falling down to normal for the full expected duration of the medicine. It seems to stay reasonable for another hour after that, then starts creeping up again.

So far she hasn't had any significant other symptoms. She's got an occasional cough or two, and I've seen her nose drip once, but nothing that would be unusual for when Ella's not sick. About the only other reaction she's had is being a bit more tired, and snugly, than normal.

Regardless, she's doing well and is full of engergy most of the time. We've just had to limit our playing to the house and our own yard, no visits to the gym daycare today...

And for all the mothers who read this blog, Happy Mother's day!

Sick..

Well, Ella's got some kind of stomach virus.

She had a 102.5+ fever on weds afternoon, and it wouldn't go down very much even with ibuprofen and a tepid bath. Since the fever wouldn't break, Mental Mother made an appointment with a Nighttime Pediatrics and we took her in at 9:20pm. After a long wait, they tested her for flu and strep, but neither came up positive. So we took her home, gave her more ibuprofen, and put her to bed. The fever had broken at 1:30am, but when we checked on her later after the ibuprofen wore off, it had soared back up to 103.2. Today her fever was low, but needed occasional treatment with ibuprofen. Since then she's had one bout of stomach virus symptoms, so it looks like she has some kind of stomach bug that isn't influenza, but behaves similarly.

So Ella's a bit under the weather, and I don't feel 100% myself, but other than that, all's good at our home. Hope you're all well.

Cardiologist visit...

Ok, I'm actually backfilling news from last Friday, July 25th.

Ella went and saw her cardiologist to check on her PDA with an echocardiogram. This is going reasonably well, but the opening is now larger than expected. It's not causing her any harm, but they're now expecting they will eventually have to close it (via a catheter type procedure). However since it is still fairly small and not causing her any problems, they're going to wait and check on it again when she turns 3.

The cardiologist also told us that they'd be able to see any signs of trouble on the echo long before we'd see any physical symptoms. Apparently the first sign is enlargement of the left ventricle of the heart, which Ella isn't showing in the echo. They also did an EKG and they did not note any irregularities in heart rhythm (another sign), and we've not observed her being unusually short of breath (the first sign we'd be able to see).

Flu and emergency room update...

As I mentioned in my last post, late Thursday afternoon we took Ella to the emergency room for hydration. Thursday night was a bit rough, but she's now almost completely better.

Today, two days later, Ella is doing well and no longer shows any major signs of being sick. She had no fever today and didn't vomit at all. She did sleep a lot, ate a little bit less than normal, had one loose stool and a lot of gas, but that's all for signs of sickness.

One thing that did come up in her emergency room visit was her liver enzymes were a little elevated. Nothing serious, and viruses can cause this, but it's a little rare in stomach flu type viruses. In a month we need to take her in for a liver function test, just to make sure there's not an ongoing liver problem.

Stomach Flu again..

Well, Ella's sick with the stomach flu again (or rotavirus, or whatever else is going around).. She got violently ill yesterday, and couldn't keep anything down, not even water. By late afternoon she was getting listless and shaky, so after my wife called the pediatrician, we took her to the hospital.

Going to the hospital perked her up because it was a new place, and the doctor who saw her wasn't terribly concerned, but ordered and IV of fluids and a little bloodwork as well. Originally they were just going to IV her for an hour (200ml/hr of sodium chloride 0.9% solution), however after the bloodwork came back they upped that to 2 hours and gave her a dose of zofran for nausea.

So, we spent a bit under 4 hours at the hospital last night (from about 5 to about 9), but it turned out to be a good thing. about 75% of the way through treatment Ella felt much better and started drinking water out of a soda bottle (I got it for my wife, but Ella protested vehemently until we gave it to her). She drank about 8oz and kept it down, which was really good.

She's still quite sick, but has been able to keep fluids and simple foods down now without immediately vomiting. She got sick once today, but that's not so bad.

As for the parents, both of us are feeling a bit run down, but it's hard to tell if that's lack of sleep and stress, or if we're coming down with it too...

Hope you're all staying well...

The flu and speech therapist...

Well, thinking I was "coming down with" the flu was an understatement.. both me and Karla got hit quite severely by the flu on Saturday night. Although my stomach recovered fully by Monday morning, I was still a bit sore and weak as my body was still recovering from the abdominal muscle strain, dehydration and fever. As a result, I took today off work to recuperate.

Flu aside, Ella saw a Speech Pathologist this morning for the first time. That was fairly helpful, and we got some feedback on some of the tactics we've been using, and some tips on recognizing some of her attempts at speaking so we can better encourage them.

It was also recommended we take Ella in for an audiological screen. This is a detailed hearing test, and a test with a device called a tympanometer that bounces sound waves off the eardrum and tests the movement of the eardrum by analyzing the reflected sounds.

Ella's hearing appears to be fine because she's got an excellent receptive vocabulary (she can clearly discern over 100 words that we've counted). However, because she keeps pulling on her left ear they want to screen for fluid trapped in her ear. It's probably just a frustration or boredom habit, but it could be a sign of trouble there.

Biting lemons and the flu..

Sorry it's been a bit, but life's been busy. Ella's got the flu, and I seem to be coming down with it too.

As for the Lemons...

Last Weekend, Ella got together with JP and his mother. Among other things, we all went out to dinner at Applebees. While at dinner, JP was eating the lemon out of his mother's tea. Apparently he likes them, and is rather insistent upon having them if they're on the table...

So, I decided to try to give Ella a taste of mine.. lo and behold, she likes them too. She does make reel back and twisted faces right after biting it, but then she opens her mouth back up, leans forward and takes another bite.

However, in some of my recent reading, I found that giving a child strong-tasting foods, such as lemons, Tabasco sauce, etc , is actually a therapy method used in aiding children with speech delays. The idea is the alarming tastes cause them to focus on their mouth more, aiding oral motor development. This is, of course, presuming the child doesn't over-react to them.

So, shout-outs to JP's mom.. thanks for the free speech therapy :)