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.