Tuesday, July 23, 2013

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.

Friday, July 19, 2013

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!

Monday, July 8, 2013

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.