4 Years Old - Moving On

We had a small group of friends over for the kids' fourth birthday party yesterday. It's hard to imagine that 4 years ago our lives changed forever. This was Sofia's long awaited trach-free birthday and she celebrated it with her friend Kai-Lan! And by running around the house with Daniel! Both kids are fully recovered from their road trip and are loving being back at school. As are their parents. This week we will have a small memorial for Raymond by planting another plant in his memory. And we thought that this is an appropriate time for us to "close" the blog. There are still many challenges ahead: getting Sofia off her feeding tube and eating solid food, getting her talking, Daniel improving his social and verbal skills, and all of the regular things 4 year olds need! But the big, crazy challenge of keeping Sofia alive these past four years has been accomplished thanks to help from our family, friends, doctors, nurses, neighbors and of course support from our blog readers. The adventure will continue on, so if you haven't already please friend mommy at Christine Maltese Yang on Facebook, for the ongoing saga of the Yang triplets. Ted + Christine

Back from our huge roadtrip!

We just got back from our 1.5 wk roadtrip to Denver for Uncle Tim's wedding. Sofia wasn't quite ready to fly yet so we piled in the car for a drive across most of the country. A good thing too as when the altitude went up her sats dropped and the first night out there was a bit tough. We stopped at plenty of friends along the way and had lots of adventures. Here are some random pics from the trip, more to come later:

And a video of Daniel dancing (?) with a street violinist in Boulder:

Still sick

Sofia is recovering but is still coughing a lot, so we will be taking her to chop next monday to see their pulmonology unit as well as have her altitude tested to see if she is ready for her trip to Denver. Daniel is mostly recovered and both kids are a lot happier overall!

Sick little girl

Sofia has had some kind of bug for the past few days and so did Daniel.  To help her get better she is getting nebulizer treatments as well as her vest treatment which loosens up her mucus and secretions.  Now that she is trach-free, she can't just be suctioned to remove them!

On her own

CHOP has basically declared victory on her airway. Her next scope won't be until the fall. This is great news but of course it means that Sofia won't have as much nursing. Right now we still have nursing in the night because of all of the feeding issues and monitoring needed, especially so close to her surgery to prevent any reflux or other issues. So Sofia had to go to school today on her own and have class without a nurse following her around. Of course Daniel as there to help out. Sort of. She did great!

First Sail and Update

For the 4th we were lucky enough to take the family on a friend's boat to sail around the sound a bit. Just for the afternoon. Both kids really enjoyed it although Sofia was antsy at first. Daniel was really good throughout. However after stopping for lunch, both kids promptly passed out on the way back! Sorry no pictures, we'll take some next time! Sofia had a swallow test with her feeding therapist, her first since her last surgery. She did pretty well although is out of practice. We're speaking now to CHOP to see how they want to proceed but the results were encouraging.

Patriotic kids

The kids are all ready for the 4th!

Unfortunately Sofia fell off the couch yesterday and had to get a stitch. She was jealous anyways of Daniel's special trip and was missing her friends at the hospital.  She wouldn't sit still for more than one stitch even with three people holding her down.  She's fine now so one was enough!

Big Day of Firsts

Yesterday we took the kids for the first time to our town's fake beach (since it is really a small pond). They both were really good and ran around playing with everything. Sofia was way more adventurous than Daniel in the water, although he did fine too until he he fell in accidentally. We then followed it up with upstairs bathtime for both (a first for Daniel). And since things have healed up Sofia is now backpack free during the days once again. She'll still get J-tube feeds continuously at night but we are starting the process of getting her to start to swallow soft foods again, starting in 2 weeks or so, which is the next big trip/milestone for her repair.

Scope

We just spoke with the doctors and it looks like Sofia's repair is holding well and he didn't have to do any dilation. On our next trip in 2 weeks he will try swallowing with her.

Flower girl in action

From my cousin's wedding yesterday. 

Sofia was really well behaved all day yesterday but Daniel ran around everywhere.  Still they were overall pretty kid and we stayed in a hotel for the first time ever with the family.

Cool new fashion accessory

Sofia has a new vest to help her move mucous now that she doesn't have a trach.  It vibrates very quickly so she needs to get used to the sensation.

Fashion Show

The kids are styling some new clothes from their summer collection.

Big Boy Bed

Not to be outdone by his sister, Daniel slept for the first time yesterday in his big boy bed. We picked up a set of used bunk beds and setup just the bottom of it for him over the weekend. Here he is posing for his new sleepwear collection.

Big girl bath

Here is Sofia taking a bath in the big tub upstairs!

Big Girl Bed (and Room!)

Big day yesterday as Sofia finally moved into her own room across the hall from Daniel. Sofia has been downstairs for years so that there is better access for emergencies and for all of her visitors but now that her trach is gone we felt the time is right. Plus she did very well in a big bed at the hospital. She loves how pink her room is! Yesterday, she took her nap fine but had some trouble going to bed last night. She also needs to adjust to using the upstairs potty.

Hopefully she'll be good tonight.

Enjoying the summer

The kids are having a great time this memorial day weekend.  We couldn't go to any bbqs as we still need to limit Sofia's exposure until we go back for another check late June to give time for the repair to heal properly and toughen up.

One week check

We are back from our one week check. Everyone thought she was doing much better clearing air and sat wise but remain very concerned about keeping her healthy until the repair heals. He wants to scope her in a month and may do some dilation or treatment then.

Also unfortunately she contracted a uti in the hospital and has a bald spot both of which we are treating.

Back to School

Sofia did great on her first day back to school and has been doing very well at night as well. Daniel is having a bit tougher of a time getting back used to having so many people around. Still both kids had a great weekend, running around outside, just in time for it to be rainy at the beginning of the week again.

Pictures

Here is Sofia playing with her welcome home balloons!

We are home!

Sofia is happy to be home but now needs to get used to walking around everywhere and not watching tv all day.  Daniel was happy to see Sofia as well.

Now the key is to keep her healthy for the next month so everything fully heals and she doesn't backslide.

Pics tomorrow

Home Tomorrow

Sofia had her scope first thing this morning and it looked great so they are finally sending us home tomorrow! Overall the graft site looked good and her airway is mostly open. She's recovering from anesthesia now and is very sleepy. We will have to come back next week for a follow-up because he is concerned that the top of her airway may need dilation so will probably stay with grandmommy and granddaddy for a night, maybe even bringing Daniel for his first trip. Here is a picture from earlier of her post-trach!

Off of the drugs

Sofia is finally off her meds and is pretty much back to normal except is still a bit weak.  Personality wise she is a little fed up with all the people poking her here and has turned into a tv junkie but she is laughing and smiling with us.

We are basically waiting for our thurs bronch after which everyone expects us to be released on fri.  She has work to do on her voice and swallowing in the meantime.  And we need to get adjusted to a whole new way of taking care of Sofia.

Wagon ride

Sofia was doing well enough for us to disconnect all her monitors and take her around the ward in a wagon.  She didn't like it as much as we thought she might...

Monday

Sofia is continuing to improve and hopefully today they will stop her drugs as she appears to be finished with her withdrawal. She's definitely swallowing and is much more active but still is weak. We'll also get the speech people to come in today to evaluate her and see if she is doing ok. Next thing to do is to figure out when she can be scoped again after which we'll know when we can get out of the hospital, hopefully by the end of the week. Unfortunately she was feeling so good she decided to get up at midnight and has been up since and watching TV. She's staying mostly put in her big girl hospital bed but will likely crash sometime this morning.

Special Mother's Day Outfit

Sofia's J tube got stuck and we were originally going to have to wait until tomorrow but somebody got us in today and they were super fast in replacing it once we got down to radiology.

It was a sterile room so Mom had to get specially dressed up to help.

Sofia video

Here she is sitting up and watching kai-lan and a little laugh at the end!

Happy Mother's Day

Sofia is happy this morning and finally swallowing. She is also vocalizing more. Her Jtube is clogged so the nurse is trying Clog Zapper. We are hoping to avoid a trip to radiology in order to replace it.

First Bath

Sofia just took her first bath ever breathing on her own without any extra tubes.  She continues to do well on room air and also did a little walking with PT today.

Room Air

Sofia is now on room air with no extra oxygen. We will try to get her up and moving today, and maybe even a dip in the bathtub.

Friday

Sofia is doing well. Both her oxygen and pain medication were weaned. She is very weak and can barely sit up so OT and PT will work with her daily. Here she is this morning with daddy.

Doing better

Sofia has improved a lot in the last 48 hours. She got a good night's rest and is now breathing a lot more easily. She's down from 100 to 40% oxygen and 6L of flow and will be back on her full feeds later today. She still is on her pain meds and is still in withdrawal from her opiates but is getting a bit better. She's also finally learned to cough and swallow a bit of her secretions but also gags a lot. Here she is with a bit of smile while watching TV.

She's got a long way to go still (7-10 days say the docs) and she's blown her IVs again, but everyone is feeling a bit more confident she will make it out.

Here's Daniel having a good time at home w/ Grandma eating his watermelon.

More comfortable

Sofia was ok today as the doctors weaned some of the IV meds. A bit shaky and sleepy. She is on 90 percent oxygen but comfortable there. They restarted pedialyte. She is coughing a bit more on her own but hasn't figured out how to swallow again. So lots of drool. Here she is this morning resting.

Morning update

Sofia had a tough first night breathing on her own and Mom stayed over at the hospital to be with her. She was on a helium-oxygen mixture but is now on positive high-pressure oxygen. She's also still in withdrawal from her pain meds and has the shakes. She's breathing easier but still needs to learn how to deal with her secretions and cough things out which are all exacerabted by the surgery and withdrawal. It's going to be another difficult day and she we hope she improves soon.

Sofia status

Being recently extubated she is at more risk not less.  Sofia is extremely critical right now.  She needs to be able to breathe and deal with secretions through a whole new system and as of this moment she cannot without help.  She is also suffering from withdrawal from her various sedatives and has blown through her iv's.

We are not even close to out of the woods and she may yet fail and need reintubation.  So please no declarations of victory or congratulations until they are deserved.

Extubated

Sofia was finally extubated around 2pm today. She is on oxygen through nasal cannula and she is suffering from withdrawl of all the sedation meds. Here she is almost opening her eyes after the extubation. We are trying to help her get settled and breathe more comfortably.

930

Going to try extubation at 930.  She is being weaned off of sedation now.

Good for tomorrow

She is back from her scope and everything looks great according to her surgeon.

Here is the picture of her airway and it looks nicely open.  He thinks the extubation will go fine tomorrow but may have more issues a week or two on.

Waiting

Sofia is comfortably waiting until the OR is ready. All bundled up in bed. Still waiting for the scope....

Scope today

Sofia had a pretty good night although her IVs keep failing so she's had to get three new ones yesterday. She's relaxing most of the day and so far the Drs think she is recovering nicely. We'll know more after her scope today (which happens in the OR) after which willthey determine whether or not they will try to extubate her tomorrow.

Trying to get up

Sofia needs to stay sleeping so that she can heal but she keeps trying to wake up and see what's going on.  Here she is after Mom calmed her down.

No fever today so things are a bit more calm.  Scope tomorrow will be give an idea of how her airway is healing.

In other news we are very unhappy with the ronald mcdonald house as our room connects directly to the one next door and so it is noisy all night long and the manager can basically do zero to help us until the real staff show up on mon.

Saturday

Sofia is doing better today as they were better able to get the gunk out of her lungs.  She is still unconscious to keep her from pulling out her tube or damaging her new airway.

Here she is getting a lung treatment.

A Neck Without Trach Ties

A glimpse of Sofia's neck with no trach ties.
Also, good news in that her blood gas showed a lower CO2 than her vent reading so it was the machine's problem - not Sofia's.

First night

She had a bit of a rough night as she is uncomfortable and fighting being stuck and intubated so they had to give her some quick doses of sedatives and up her pain meds. 
She's resting now but will need close attention to keep her from pulling out her tube or ivs and so she can recover.

All done!

Sofia is finished with her surgery and is recovering in the icu.  The surgery went fine but there was more granulation tissue and bleeding than expected so it took longer and may require more followup.  She will be sedated for the next few days so we don't expect her to wake up today.

Right now she is intubated through her nose as her trach is completely sealed!  On Mon the Dr will scope her again and the plan is to attempt extubatution on Tues and keep her in the icu for a week after that.  The key now is for her airway to maintain integrity so she doesn't need to be trached again!

Update

Sofia is about three hours in and things are going fine.  There was a lot more scar tissue than expected so time wise there are still 3 or more hours to go but otherwise things are good.

Btw CHOP is very good at giving gametime reporting which is very cool

Waiting in preop

She is being very good reading with Mom

Ready to go

We spent the day getting packed and all set for the big day tomorrow.  Sofia has been very excited so that means that she doesn't suspect a thing or that she knows it will all work out and is excited to be rid of her trach!

Daniel is doing well too and happy to spend some time with grandma.  Hopefully we will be back sooner than we expect and this will be her last picture with her hme (but not her backpack)!

And here is a picture of Daniel after his bath today.

Playing with Mom

Here is Sofia playing with a new little toy.

Surgery day confirmed May 3

We're pretty much confirmed for surgery next week for Sofia so everything now is all about getting ready to spend the next few weeks in Philly while Grandma takes care of Daniel at our house. Most important thing is for Sofia to stay healthy so we're on lockdown here with no extraneous visitors or trips outside. There's a lot we need to pull together to get ready but hopefully this is the LAST time!

Getting ready

We are gearing up for our next trip to Philly and Sofia's latest big surgery. She's had a bit of a cold so has been on the passy primarily and in general has been very fussy and throwing tantrums when she doesn't get her way. She's also quite hooked on the Olivia cartoon which is what she keeps asking for! Daniel is singing up a storm and nowadays sings the "Doe a Deer" at least once an hour!

J tube girl again!

We went on Mon to Yale to have another J tube put in. It is all because they want to eliminate any chance of reflux right before and for some time after her surgery. However this time she can continue on eating some soft foods PO which will help.

Unfortunately between the J tube (which leaves her tummy empty and has her wearing her backpack again all day), the hot weather, and still having a cold she was really cranky yesterday at school and we got a bad report of her acting out and hitting teachers. She was also bad with mommy at home.

At least she can get it all out of the way before our preop visit next week to CHOP.

Potty Progress

Sofia had a day with NO ACCIDENTS yesterday. She is really making potty progress. It is harder for children that are fed through g-tubes to potty train but with this second go-around she is getting it.

Stitches

Daniel slipped off the stool in the bathroom while brushing his teeth and split his chin open. Lots of screaming and blood prompted a call to 911, but he was calm and interested on the ride to the hospital in the ambulance. 5 stitches and two hours later we left the hospital.

Potty Training Sofia

We started again this week to potty train Sofia and so far it is a struggle. She's had a few successes, mostly in school. At home it's clear that she has some control but she decides to be naughty and pee on the floor when mommy and daddy go out of the room. Although she's peed on daddy a few times too.

Sofia Finger Painting at School

Sorry we haven't had many updates. Things are keeping on over here as we celebrate early Spring! Sofia has been capping non-stop up until this week when caught a little bit of sniffles. Right now are trying to keep things good with her until her surgery in 6 weeks! Daniel continues to grow and is eating a lot better recently (but still no meat).

Both kids continue to love school. Here is Sofia finger painting which is something she would never have been able to stick with doing a few months ago.