Mommy scored some cool new toys from our church tag sale. Here are the kids playing outside on them... whee!
Saturday, August 20, 2011
Wednesday, August 17, 2011
And the results are...
Looking good! Her new airway measures about 4.2mm. Not quite the 4.5+ that the surgeon was looking for but he expects it to enlarge as she heals and grows over the next few weeks.
Which brings us to step two (really step two hundred and two with this little girl!). He investigated the site of her suprastomal collapse and thinks that it wasn't as bad as he thought. This is overall good news because he now can excise the granuloma tissue and then pin the collapsed tissue to the trach wall rather than have to do a mini-single stage LTR at the stoma site. Then he will downsize the trach and we will be on the "regular" capping/passy protocol towards decannulation. The plan is to do this the first week of October, to give her plenty of time to heal from the previous surgery.
This changes the nature of the surgery from an all-in-one, come home decannulated or fail to a less risky and safer course. But it will be longer, which over the winter has separate risks.
Overall though he was confident that the trach will be coming out one way or another which is great to hear, we just need to keep hanging on.
Which brings us to step two (really step two hundred and two with this little girl!). He investigated the site of her suprastomal collapse and thinks that it wasn't as bad as he thought. This is overall good news because he now can excise the granuloma tissue and then pin the collapsed tissue to the trach wall rather than have to do a mini-single stage LTR at the stoma site. Then he will downsize the trach and we will be on the "regular" capping/passy protocol towards decannulation. The plan is to do this the first week of October, to give her plenty of time to heal from the previous surgery.
This changes the nature of the surgery from an all-in-one, come home decannulated or fail to a less risky and safer course. But it will be longer, which over the winter has separate risks.
Overall though he was confident that the trach will be coming out one way or another which is great to hear, we just need to keep hanging on.
Friday, August 12, 2011
Friday, August 5, 2011
Long day with some good news
Yesterday was a really long day. Sofia started off the day by decannulating, probably because she missed having the EMTs come by! It took some doing but Daddy was able to reinsert the trach before the paramedics showed up and everything was fine. However it delayed our trip to Philly so we didn't get going until later on.
The scoping was super quick (maybe we should come late to CHOP all the time!) and a picture is below. Her airway is doing great (top two pictures)! In fact if you compare to the surgery from last April/May [http://yangtriplets.blogspot.com/2010/06/two-more-months.html] she is doing much better as it is completely open and the surgeon says it will open up even more. Sofia is building up mucuous on the new airway as well.
However (and there is always a however these days), her trach around her stoma has collapsed somewhat (suprastomal collapse on bottom two pictures). This is a direct result of having a trach for a long time. We'll know more when we go back for the next scope in two weeks but the surgeon suspects (and has suspected) that he will need to do a mini-single stage LTR right around the area. And he mentioned doing it in the SPRING (which of course Daddy immediately said well why not the summer/fall??)
Either way at this point Sofia needs more time to heal and then after the second scope we'll know more and get a plan together.
After the hospital we stopped by Grandmommy and daddys place in Philly, then hit some discount outlets for some kid clothes bargains before finally making it home late in the night. Whew!
The scoping was super quick (maybe we should come late to CHOP all the time!) and a picture is below. Her airway is doing great (top two pictures)! In fact if you compare to the surgery from last April/May [http://yangtriplets.blogspot.com/2010/06/two-more-months.html] she is doing much better as it is completely open and the surgeon says it will open up even more. Sofia is building up mucuous on the new airway as well.
However (and there is always a however these days), her trach around her stoma has collapsed somewhat (suprastomal collapse on bottom two pictures). This is a direct result of having a trach for a long time. We'll know more when we go back for the next scope in two weeks but the surgeon suspects (and has suspected) that he will need to do a mini-single stage LTR right around the area. And he mentioned doing it in the SPRING (which of course Daddy immediately said well why not the summer/fall??)
Either way at this point Sofia needs more time to heal and then after the second scope we'll know more and get a plan together.
After the hospital we stopped by Grandmommy and daddys place in Philly, then hit some discount outlets for some kid clothes bargains before finally making it home late in the night. Whew!
Wednesday, August 3, 2011
First bronch tomorrow
Tomorrow we go back to CHOP for a day (a very long day!) to get a first view on how well Sofia's new airway is doing. We're all hoping for good news but it is probably too early to tell.
Monday, August 1, 2011
We're home...
Sofia and Daniel are back home and having a great time.
But Mommy had to run Sofia to Yale yesterday to change out her G/J tube because it had become contracted back into her stomach (defeating the whole purpose and putting her at risk for reflux). Again it was scheduled and should've been done at CHOP together with the stent removal but hit a SNAFU.
But Mommy had to run Sofia to Yale yesterday to change out her G/J tube because it had become contracted back into her stomach (defeating the whole purpose and putting her at risk for reflux). Again it was scheduled and should've been done at CHOP together with the stent removal but hit a SNAFU.
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