Sleep study...

Zadie had her sleep study on Sunday night.  It started off pretty eventfully, as her Gtube balloon (the tube is held in by a water filled balloon - read more about it here) burst and the tube fell out.  I didn't have a replacement with me and the sleep study staff insisted that we go to the ER to get a replacement.  I was pretty upset, because I didn't know how long it would take for the replacement, and I really wanted the sleep study to happen.  But, the CHOP ER staff was wonderful and we had a new tube in within 2 hours and we were back to the sleep lab.  I have learned a lesson: always take a replacement tube!

Zadie showing off her new tube

So now that we were back in the sleep lab, we started to get ready for the study.  Since she didn't get a good nap that day (she slept for a total of about an hour, in two increments, in the car) and we already had to mess with her to get the new tube in, I was worried she'd be very uncooperative.  She did great while the respiratory therapist (RT) started putting the electrodes on her head and body.  She got to pick which color wire was put on next.  I said to the RT, wow, she's being really good.  She said, yeah, this part isn't the hard part.  We found out what was.  The nasal cannula.

All smiles for first electrodes

Wrap my head up in gauze?  Ok!

A gauze hat with bunny ears?  Great!

Nasal cannula...not cool.

Once the nasal cannula was in (it measured the carbon dioxide she was breathing - it had a little attachment for her mouth in case she was mouth breathing), she was very unhappy.  She cried on and off until she fell asleep.  The RT brought her a coloring book and crayons and she would be happy with that for a short time but then start crying again.  We really tried to keep her from crying too much, because the cannula couldn't get too wet and neither could the tape.  I really didn't want her to have to replace the cannula.  Zadie would just think she was getting it off and then to have to put it back on would be awful.

Occupied with a new coloring book and crayons..

Zadie didn't know what to do with herself.  She was crying on and off, she wanted to be off the bed (but she couldn't be, since she was all wired up and connected already), she wanted me holding her, she wanted me on my own bed, she wanted her milk, she didn't want her milk.  I finally got her to lay down by telling her I'd come back to her bed if she put her head on the pillow.  She did, and I did, and she fell asleep soon after that.  The RT told me when it was safe to move (she could see from her readings when she was in a deep sleep).  She slept fairly well, but she did snore a lot (just like Daddy!).  I knew that wasn't a good sign.  But she would sort of wake up every so often, crying.  I finally got to sleep, and then she woke up about 4 am and puked.  Her cup of milk was still on the bed, and I think she drank it and it wasn't very fresh.  We got her cleaned her up and she went back to sleep pretty quickly.

Despite it all, a smile at 4 am!

We were woken up at 6 am.  The RT cleaned up the wax out of her hair as best as she could and we were sent on our way.  Zadie was so happy!

So happy to be heading home!

I got a call from the ENT's office today and she briefly went over the results.  Zadie did have some apnea and that has to be addressed.  We have an appointment to see the ENT on August 12 to discuss the plan, but there's no way I'm going to be able to wait that long to find out what the plan is, so I'm going to call tomorrow and try to get more information.

The sleep study is two days away!!!

I'm getting very anxious as Zadie's capped sleep study is practically here!  I'm worrying about every aspect.  I want her to be 100% healthy so that something as simple as a cold doesn't hurt her results.  I want her to be tired enough to sleep easily with a million wires all over her and in a strange bed, but with a two hour ride to get to the hospital (CHOP), it's pretty inevitable that she will nap that day.

I am really excited that this will possibly be the beginning of the end of trached life for Zadie, but I'm really trying not to get my hopes up.  I am trying to stay positive, though, and not think about any negative possibilities.

Please keep Zadie in your thoughts on Sunday night for a peaceful and easy sleep with good numbers!

Persistence is key!

Since I made the appointment for Zadie's sleep study a few weeks ago, I've been calling every other day to check for cancellations.  Today, my persistence (or pestiness?) paid off!  A lovely woman by the name of Mary set Zadie up with an appointment on July 21, a full month earlier than the original appointment (and less than two weeks away!).  I'm very excited and hopeful that this will go very well.

The sleep study is scheduled!

The sleep study is scheduled.  Unfortunately, it's not until August 21!  I guess the doctor wasn't kidding when he said it would be about two months away.  The lady I talked to said that there are always cancellations and that I can call every other day to check.  So I guess that's what I'll be doing for the next two months!  Hopefully we'll be able to get in sooner.

CHOP update

We all took a ride down to Philly today. It was a crazy rainy day which made the trip even longer.  Because of the weather, I guess a lot of the appointments before us were running late.  Zadie's appointment was at 11:20 and we didn't see the doctor until after 2!

Dr. Javia looked at Zadie's ears.  She has an infection in her left ear, which we suspected.  Since she has a tube in there, it didn't seem to be hurting her, it was just draining a lot and she kept picking at it.  She was prescribed antibiotic drops for that.  The tube in her right ear fell out and is still sitting in her ear canal.  He said it will eventually fall out of her ear.  Even though she didn't pass her hearing test in that ear in April, possibly because the tube is out, we will just monitor it for now and will not take any action.

Since Zadie is doing so well with the capping, we are now cleared to get scheduled for a sleep study.  Unfortunately, Dr. Javia said it might be a couple of months until we can get in.  But, he recommended that we keep calling to ask about cancellations, etc.  If the sleep study goes well, then Zadie will be scheduled for decannulation.  When she had her bronchoscopy in September, Dr. Javia noticed that her adenoids were rather large, and they will possibly be a problem.  We won't know that until the sleep study, though.

I'm waiting for the sleep study department to call me with a date.  I'm very anxious about all of this.  They will not attempt decannulation in the winter, so we have a limited amount of time to get everything done.  It will all happen eventually, though, so if it doesn't happen this year, all is not lost.  I'm just really hoping it does!

As all good trips to Philly end, we stopped at Pat's for some cheesesteaks.

Zadie turned 2!

Zadie turned 2 on Friday!  She had a fun day, spent some time at Jonathan's preschool, then we went to Chuck E. Cheese and then out to dinner.  For the first night in over a week, she didn't need oxygen while sleeping.  Yesterday, Grandpa and Uncle Sammy came over.  I made cupcakes and we attempted to sing happy birthday, but it was confirmed that she really doesn't like people singing happy birthday to her.  She gets very upset!

Just an update on her progress...she is talking a lot. She still gets speech therapy once a week, and is saying all sorts of words, including uh-oh, oh no, water, wow, mouse, and the old favorites mama, dada, baba and baby.  She's getting big, too.  She went to see her pulmonologist the other day and she's now 24 pounds, which is great.  She's moved up in percentiles.  She's eating more and more.  She's also getting very fresh, scuffling with Jonathan and throwing toys.  Typical 2 year old, I guess!

Fresh out of the oven May 31, 2011

May 31, 2013

You can really see the difference in Zadie's chin from her newborn picture to her current picture.  One of the things about Pierre Robin Sequence that made it difficult for Zadie to eat and breathe was the recessed chin (micrognathia).  If she was born at another hospital, she probably would have had a jaw distraction, but St. Barnabas doesn't really do them and they opted to let her chin grow out on its own.  A plastic surgeon at CHOP wanted to do the distraction later on in order for her to lose the trach, but we decided to wait and see what happened.  So far, I think we made the right decision.  Her chin has grown out a lot and her trach is capped all day long, meaning she's breathing through her mouth and nose.  We're hoping she is decannulated (loses the trach) this summer!

A year ago today...

A year ago today, Zadie had her palate repaired.  I can hardly believe that much time has gone by!  That surgery was what we were looking towards her first 11 months, and here it is, a whole year after it.  It was not an easy surgery, but she bounced back remarkably well.

Right after surgery 5/1/12

Before her palate repair, she could barely suck from a bottle.  Now she drinks like a champ and is really improving with eating solid food.  And her food doesn't come out her nose anymore!

Eating!  4/2013