Friday, January 30, 2009

Sleep Study

Kate had a sleep study on Wed Jan 21, 2009 at CHOP. Even though Kate was decanned in July the study was done as a precursor to having her stoma closed surgically. We hadn't had one done prior to decann so we had no idea what to expect. The drive to CHOP is 2 hours and we needed to check in around 6:30. Most definitely it was in our favor to keep her awake on that ride and I was able to do so by feeding her gummy bears one at a time. By the time we arrived, she was positively manic on a sugar high! Anyway, we checked in extra early, only because we got there early, but we were glad we did. We had a choice of rooms. Kate layed around in the crib from 6p until about 6:30. If we'd turned off the lights, she'd have gone to bed, but she got her second wind and was roaming the halls when the tech came to set her up. The set up consists of placing various probes and wires on her head, face, chest, neck, and legs. She was FANTASTIC during the set up. She helped choose the color wire and was completely fine with all the probes, the glue they use to keep them on, the compressed air they sprayed on her to dry the glue quickly -- even the mesh headband they put on her head to keep the wires in place and the gauze around her head (for the same reason) were ok by her. But once they put the nasal prongs in she lost it completely. Adding insult to injury, they had to cover her open stoma completely with Tegaderm (a clear type of tape used mainly to secure IV sites). Hysterical doesn't even begin to cover it. Neither Brad or myself have seen her that upset since probably her palate repair 13 months ago. And because she was so pissed, she was struggling in some ways to breathe. In retrospect, she was probably just re learning what it's like to not have an extra hole in which to take in air, but it sure looked like a moderate form of distress to us. She never changed color though and the techs told us she was satting in the high 90s even while upset. I was able to rock her to sleep and then place her in the crib. She woke up hysterical 3 more times but I got her back to sleep easily. She slept pretty peacefully from 12 to 6, with no major snoring or weird breathing.

So all in all it was an ok experience. Definitely keeping her awake during the day helped. In fact the lab told us we should, not because it produced better results per se, just that she would be tired enough to eventually sleep. I knew there would be a lot of probes, but I didn't really try and relate it for her and I wished I had. Hopefully she won't need to do it again.

Now we play the waiting game. It's been 8 days and I haven't heard anything. I think Monday I'll make some calls. No WAY I can wait until Feb 12. That's our next scheduled appointment in airway clinic. We're supposed to discuss the results and either plan a stoma closure, or not.

Thursday, January 22, 2009

Life after trach

SO Kate was finally decannulated on July 4th, 2008. It really did feel like Independence Day.

My daughter was finally independent of the piece of silicone that had kept her alive.

She was finally independent of a wire on her toe while she slept.

She was free of the stares of strangers who couldn't understand what she'd been through.

Life after the trach was bittersweet too. After a very successful post decann check up with Dr. Jacobs, Kate was released from all equipment, supplies and nursing that were related to being a technology dependent child. I was thrilled to bits with all of this, but I won't lie -- life without nursing was very different. We immediately went from pretty much glorified babysitting 16 hrs a day to no babysitting. Kate's primary nurse was a constant in all our lives, and was missed by all of us right away. It was like having your girlfriend in your house for 8hrs a day for chatting and companionship, and then all of a sudden she's gone. Sigh...

Anyway, Kate made huge strides the first few months trach free. She'd already learned to talk around the trach, but she continued with speech therapy to get her up to par. This didn't last long and Kate was booted from Early Intervention Speech Therapy and Physical Therapy within 6 weeks of decannulation. Once the trach was gone, she had a language explosion. It took about 4 months, but by the winter she was talking clearly in full sentences. And boy can this girl talk!

Another big BIG thing was the feeding tube. I'm sure if you've read enough you get that I abhored the feeding tube with everything in my body. We went back and forth so much with it, but ultimately it served her well and kept her gaining weight while she learned to eat. Her ENT knew we struggled with it, but he asked that we keep it in through the LTP surgery and recovery. We agreed and I used it to pump her weight up in anticipation of the post op period. Of course there wasn't an operation, but I was too tense to just take it out even though the morning of her decannulation she ate her entire breakfast tray and then some. How's that for stupid? After all my whining and complaining about the feeding tube, it was me that insisted it be kept in! So for several weeks after the trach was out, we continued to feed her that 7pm slow gravity tube feeding. One Saturday (the first weekend in August) we took the tube out for a visit to some relatives who'd never met Kate. That night, we decided to jump into the abyss. We didn't put the feeding tube back in that night, or any night. She was eating and she continued to eat. I felt good about it, but I was leaving her weight in her tiny little hands. I encouraged her to eat whenever and wherever she wanted...that caused it's own tiny problem later on, but that's ok.

SO life without the trach meant:

*no nurses in our house
*no supplies, machines or emergency bag next to her bed
* she could finally move up to that cute pink room
*I could take her anywhere I wanted without a GO bag in tow

Ahh freedom...or was it?? We still had an open stoma where that piece of silicone used to be. What were we supposed to do with that??