Thursday, May 17, 2007

Some Good News

Just as clarification: The two weeks of healing is just the minimum amount of time to allow her esophagus to heal before they will chance her throwing up real and for-actual fluid. Once we get to that point, we start feeding her through her G-tube. If she tolerates THAT? Then we head home for the hard part. Life with the G-tube, and somehow keeping all food and drink out of this poor kids mouth. For about two months.

The good news? She had already demonstrated that she can swallow.... her own spit goes down nicely! She has already demonstrated that her vocal chords were not compromised, she can talk, laugh and cry. Just not very loudly yet. So long as I can keep her from using her throat.... for any kind of eating and drinking for the prescibed time, we should be back to normal. Right now I am tenuously hoping for our annual Pioneer Day trip to the lake. For those of you who don't live in Utah.... that's around July 24th. Hoping for it, but prepping myself for a summer of G-tube frolic.

More good news? My concerns about her funny swallowing sound and the appearance of swelling above her neck incision actually delighted the surgeon when she saw them later in the day. The funny sound is just more of the healing process. The swelling was not swelling at all, but a decrease of swelling causing the flesh above the incision to kind of sag down and give the appearance of puffyness. The oxygen dip? Is something that happens to lots of folks as they naturally fall asleep. As a matter of fact, she is now DONE with that particular annoying monitor, and only has to get checked with it once a shift rather than try and sleep with it on. I say annoying because every time she rolled over it would shift, and the crapping alarm would go off and wake her up. And then I would wake up and have to rock her back to sleep. It is possible that a cranky mama snarling at the night nurses had a little something to do with the end of THAT experiment in sleep deprivation.

More good news? She can swim and bathe with a G-tube after it heals, and we are almost half way there. More good news? There are many people who care very much about this little girl and the Chaos family. The goodwill and love is pouring in. I SWEAR that I can feel the good joo-joo being aimed in our direction! I have been getting e-mails and calls and visits from family and friends. Jo from Utah (links are down... you can find her though my comments) came to visit me yesterday. She brought a gift bag for Pearl and I. I now plan to have pictures soon of the girlie with TWO defiant ponytails, complete with a bit of ribbon froo-froo on each, thanks to Jo's kindness.

Another lurker around here is a co-worker of Dadguys (hiya J!). She sent over a large toy drum just packed with the cutest bug themed instruments and sound makers. It sounds like a par-tay around here. Neighbor down the street sent over some "light reading" and treats, along with a Braveheart Lion toy. Elizasmom sent a gift certificate for, and I think we WILL take her advice and get us some Pigeon Books. The poor women in my Ward are a little distressed that we have not yet asked for help, but really? We have been so well taken care of by family, it's hard to find a spot on the Wagon of Chaos for more people to help push! I bet we will be asking for help later though.

Tomorrow is gonna be a very big day. She gets her first Esophagram done. It's a swallowing, x-raying type test-a-ma-whoosit that will give us an idea of how the healing is going. It is perhaps in the realm of possibility that we could go home some time next week. Maybe. Please?

Well I gotta go. Pearl is napping and I'd like to use this time to take a shower before my Sis comes to stay with the girlie so Dadguy and I can go see Spiderman 3. You heard me... I'm goin' on a date tonight!


Nobody™ said...

I am thrilled to hear the progress Pearl is making! She is always in my thoughts.

By the way, they always told me that sleeping isn't allowed in hospitals. I think they were kidding, but it isn't far from the truth.

Beth said...

There's a whole lot that's positive in there. I'm so glad she's healing so well. Hang in there. I know it can't be easy but you are doing great. Enjoy the movie!

Jo said...

Yay for good news! That pretty lil thing deserves some breaks and so do you! It was fun meeting the both of you and I loved IV pole surfing with the Pearly-whirly. Take care!

Blogarita said...

Hurray for date night. You both deserve a little time alone with each other.

So glad Pearl is healing well. It will take time, but it sounds as if she's well on her way.

Fantastagirl said...

Glad to hear things are going well - keeping you all in our thoughts!

momofalltrades said...

Yeahy for good news! So glad to get a positive update, we're sure thinking about her here in Texas.

sarah k. said...

Woo Hoo! Date night! Your shiny little Pearl will be all right. I always say that babies are made of rubber, because they bounce and bounce and bounce. How do you keep a kid from eating through their mouth? It sounds so hard to be that kind of vigilant. I'm so glad she's doing well! Do you have to be at the hospital all the time? What do the other girls do?

sari said...

I'm glad to hear everything is progressing well!

You've still got my prayers coming in.

Have a good date! :-)

Mama D said...

Yay Pearl!!!

AND a DATE!!! Awesome! Hope you have a fantastic time.