Showing posts with label Tubie Friends. Show all posts
Showing posts with label Tubie Friends. Show all posts

Wednesday, March 30, 2016

And that, my friend, is what they call (stoma) closure.

Waiting with her Tubie Friends bear - who also got a hospital bracelet
Zadie is now blessed with only the holes God gave her.  She went in last week to have her trach stoma surgically closed.  At the same time, the surgeon cleaned up the scar tissue at her Gtube site and made sure that was fully closed.  I was able to go into the OR with her and be with her until she was asleep.  The surgery took about an hour and a half.  The anesthesiologist told me after that she was easy to intubate, which is excellent news, since a huge reason for her being trached was how difficult she was to intubate.  It's another sign that her lower jaw has grown out significantly and her upper airway is vastly improved.  A lot of Pierre Robin kids get jaw distractions, and it was suggested as a possibility for Zadie at one point.  We're very happy we elected to wait and see how her jaw grew out on its own.   

All ready to go!

When I first got to see her in recovery, she was still asleep.  They extubated her while still in a very deep sleep so that she didn't cough.  I saw Dr. Bergman right after surgery, he said everything went great.  I asked about the main possible complication, which is when air gets trapped between layers of skin.  It can be a very serious complication.  He was very confident that it wouldn't happen, since they had tested the closure in the OR by pushing air through. 


Once she was awake, she was pretty cranky, which is what she's typically like after anesthesia.  But, her oxygen sats were awesome.  Upper 90s.  I was so relieved to see that.  One of my worries going into this surgery was that she was relying on the open stoma to breathe and she would struggle once it was closed.  Seeing the good oxygen levels really reassured me. 



Great numbers!
She was to be admitted for the night just for observation, and it took forever to get a room in the PICU.  Unfortunately, she couldn't eat or drink anything for 6 hours after the surgery.  She was getting IV fluids all along, but she was hungry and thirsty.  Once we got past the 6 hours, she was allowed liquids, which included jello, yogurt, ice cream, juice, etc.  Then, the next morning, she was finally able to eat real food. 









Her new bear got bandaids in the same spot Zadie did. 
First meal, 24 hours after surgery
Feeling great and ready to bust out
 
She got released on Saturday afternoon.  We took the dressings off on Sunday.  She was a little freaked out by the sight of the incision on her belly.  She was asking a lot of questions; why was there blood, how did the doctor cut her, etc.  I wasn't expecting that!  But, it's amazing to see her neck without a hole!  And it's amazing to hear her talk without hearing the air rushing out of the stoma. 
Escaping!

Every day, she shows me her belly and her neck and says, "Look, it's healing up!" and asks me to take a picture.  She's definitely a strong kid and I would love it if this is her last surgery and she can just be a regular kid now. 

Some info on decannulation and stoma closure: http://www.chop.edu/treatments/tracheostomy-and-decannulation#.VvGl2W_mqM8













Sunday, May 18, 2014

Tonsillectomy

It's been a rough week!  Zadie had her tonsillectomy at CHOP on Tuesday.  She was scheduled to stay over one night.  The whole family went down to Philadelphia for the surgery.  She was scheduled later in the day, which was nice for getting a later start, but since she had to fast for the surgery, we all had to fast!  The surgery went fine.  Her adenoids had grown back a bit, so Dr. Javia shaved them down again.  I know that adenoids can grow back, but it's only been seven months since her adenoidectomy!  I hope they'll stay small.
Immediately after surgery, before she woke up

Cracking a little smile! A couple of hours after surgery


The plan was for BJ to stay in the hospital with Zadie overnight.  Jonathan, Beatrix and I were lucky enough to get a room at the Philadelphia Ronald McDonald House.  I will write more about the RMH in another post, because it was such an amazing place.  It was my first time at a RMH, and while I've heard nothing but good things about them, I just couldn't believe it.  For a "suggested donation" of $15 (meaning they will take less if you can't swing the $15), you get a room that's just as nice as any hotel, plus a fully stocked community kitchen that's open 24/7 and several play areas for the kids.

Jonathan and Ronald

Zadie required a little bit of oxygen overnight while sleeping, which is not unusual for her after a surgery or when she's sick.  We're fully equipped with oxygen at home, so this didn't concern us.  Of course, the hospital wanted her completely off oxygen before she was discharged.  I understand their position, but for a kid like Zadie, to keep her in the hospital just for something like that (when we can perfectly handle it at home) is silly.  She was drinking fine, which was the big requirement.  They had also put her IV in her foot, which really bugs me.  She's almost 3 years old, potty trained, and she can't get up and walk around!  She's always been very hard to find a vein, but I think they could have tried harder to find a vein in one of her arms/hands.  They do it once the kids are under anesthesia, so it's not like they're fighting a wiggling child.  I kept asking them about taking it out, but they wouldn't take it out until they knew that she was being discharged.  But, I wasn't going to let them keep her another day if that meant she was confined to the bed/chair that much longer!

They finally released her and we were on our way.  I was kind of (no, really) missing her Gtube, just because she was really fighting us to take her pain medication.

Thursday and Friday (two and three days after surgery), she fought the pain medications really hard.  We had to force her to take it just about every time, so she definitely wasn't getting full doses.  Probably because of that, she wasn't drinking as much as she should have been.  So it was a bit stressful.  She was drooling horribly a couple of times, which indicated her pain was out of control, since she wouldn't even swallow her spit.  I felt bad that we weren't helping her more.

Friday evening, she took a late nap and woke up about 7 pm, very miserable.  She was drooling and I went to wipe her mouth when I noticed bright red blood in her mouth.  Everything we were told and all the paperwork we were sent home with said any amount of blood is cause for concern and to call the ENT immediately.  She coughed up a big load of mucus and it was streaked heavily with blood.  I called the ENT resident on call (since it was 8 pm on a Friday night) and as soon as I told her what was going on, she said, "you have to take her to the nearest ER right now."

Waiting in the ER
So off Zadie and I went.  There was no more blood by the time we were at the ER, and the ER doc looked at her tonsils and saw no blood back there.  He said he'd call CHOP to consult with them.  I figured that they'd send us home.  I was wrong!  They wanted to admit her to keep an eye on her in case she started bleeding again.  Apparently, sometimes there's a small bleed and then later on, a larger bleed.  I would normally fight against her being admitted, but I had done enough googling while waiting that I was scared enough to agree.  I read about kids who had died from bleeding to death after a tonsillectomy.  The tonsils are very close to major arteries, and sometimes, when the scabs start coming off, a kid can bleed out.  A friend of mine messaged me on Facebook to tell me about a scary experience her daughter had after her tonsillectomy.  Very scary.

Like she owns the place!  Waiting for discharge, roaming the halls.

The hospital kept Zadie until about 3 pm on Saturday.  There was no more blood, and she was drinking pretty well.  We had finally gotten to a point where she would take her meds willingly if she could give them to herself (push the syringe), so from then on out, things just improved.  She would take her meds when she was supposed to, she was eating a little here and there and drinking better.  We started gradually spacing her meds out longer and she did well.  Yesterday, Saturday, about 11 days after surgery, was the first day she didn't have any pain meds and did great all day.  She's definitely lost weight but I'm hoping she'll re-gain what she lost.

Next up, another sleep study, which is scheduled for July 10.

Saturday, June 30, 2012

Tubie Friends

You might have seen the picture of Zadie with her new Tubie Friend that I posted today.  I'm so excited about this teddy bear (who BJ thinks look likes Ted.  From the movie.)

Tubie Friends is a non profit organization that was started by two mothers of kids with feeding tubes.  They want to help other parents and kids who rely on feeding tubes.  All of the "Tubie Friend Surgeons" are volunteers.  All Tubie Friends asks of applicants is for $8 to cover shipping.  If you can't afford that, it's ok.  They'll still send you a Friend.  The stuffed animals (Zadie got a Build a Bear!) are funded by donations.

I sent Zadie's application in on Sunday night and her Friend was on our doorstep on Friday!  Talk about a quick turnaround, when they tell you that a typical turnaround time is 2-4 weeks.  And it just so happens that Beary (as Jonathan named him) arrived the day before Zadie's one year anniversary with her G tube.

Check out their site.  Spread the word if you know a kid with a feeding tube.  And donate a couple of bucks if you have it!

Jonathan, Zadie, and Beary