Sunday, October 31, 2010

Halloween Pics as Promised!

That's our Super Girl!!!

Pizza face!

A Little Something Extra

It appears as though sweet Chloe might have a little complication from her surgery. As it looks now, we think her g-tube site is now infected. I've spoken to the on-call surgeon twice this weekend and although it's red and swollen, in the absence of fever, pain and/or discharge, he thinks it can wait until tomorrow to have her seen. Considering it's Sunday AND Halloween I'm trying to avoid an unnecessary trip to the ER. Here's a pic of her site (sorry for the graffic nature of the picture). I'll post Halloween pics later. . .

Wednesday, October 27, 2010

Surgery is a SUCESS!!!!

Chloe's surgery was a success! The hardest part was getting her IV line in. Thank goodness she was asleep for it!!! She is nice and bruised up, but aside from that and the bandage covering her "wound", you'd never even know she had surgery 2 days ago! I, unfortunately, got the stomach bug and had to go home, leaving Nana to care for Chloe overnight. She did a GREAT job! The big kids were home with Grandma Linda in from Montanta and cousin Miah in from North Dakota. They were having a great time even though they were worried. And although it didn't go quite as planned, it all worked out in the end, and the most important thing is that Chloe came through it all with flying colors. Here are some pre-surgery and post-surgery pics!

Thursday, October 21, 2010

Surgery a "go-go"

Assuming our little peanut stays healthy, she will have her g-tube closure procedure on Monday, 10/25. We won't know the time until tomorrow afternoon. Keep her in your thoughts and prayers. The site has been fairly dry, with only occasional "oozing" so I thought they might not want to close it, but they do, so that's good. It means we'll finally be able to put this behind us and they'll get rid of the extra skin that grew that I'm sure she would hate as she got older (besides, she plays with it!). They'll also clean out her ears and check to see if it looks like she needs tubes. One stop shopping!

I'll post the time when we have it so all positive thoughts and prayers can be focused around that time. Thanks!

Sunday, October 17, 2010

We have a DATE for surgery

October 25th is the date for surgery to close Chloe's g-tube site. She will have her g-tube hole closed, the extra skin removed and her ears cleaned and checked more closely for fluid (and get tubes if needed). This is all assuming she's stays cold-free (I think I saw a runny nose today - aaaaarrrrgggghhhh!!!) So let's hope she stays healthy so we can get this done. AND Stacey's mom and niece Miah are coming so it would be great to get it done while they're here to help. So some finger crossing would be great!

Also, yesterday was our local buddy walk. (Pictures to follow.) Chloe's Crew was the 5th highest fundraiser with over $6500 in donations!!!! We want to thank everyone who participated - everyone who walked, donated and made the walk happen. Although it was freezing with the whipping wind, we had a wonderful day and were incredibly touched by all those that chose to support Chloe's Crew.

Friday, October 15, 2010

A Fitting Tribute to a Monumental Anniversary

I thought it fitting to re-post Chloe's video about her first year on today, the anniversary of her heart surgery. It was 2 years ago today that Chloe was literally saved from death. It is a miracle day. Hope you enjoy a little walk down memory lane, including her surgery.

Friday, October 8, 2010

Sweating it Out - Lab Results

So the doc calls and leaves me a message saying to call him back that he just wants to touch base with me briefly on Chloe's labs. He says it's okay to have him interrupted. So I call back and he's finishing up with a client so I agree that he can call me back. I KNOW that there is NOTHING wrong, but yet I sit here sweating. The receptionist wasn't even aware he called me, so I KNOW it's nothing serious, but yet I sweat. You know that feeling? That feeling that everything MUST be fine. That you're simply having some crazy reaction. Some sweaty, I'm going to be so relieved when I talk to him and he tells me all is well, reaction. The I know nothings wrong, but I need to HEAR it so I can STOP SWEATING reaction! Well, he FINALLY called me back several hours (and an Ativan) later to let me know that the labs all looked good (see, I KNEW they'd be okay), but that her TSH (Thyroid Stimulating Hormone) was a little elevated (meaning she's a LITTLE underactive). It's NO big deal, but could explain the "unexplained" fatigue. We'll need to wait to hear from her endocrinologist (GREAT that usually only takes about a week!). But the good news here is NO scary thing lurking in her blood. She's all good minus a little thyroid tweeking that needs to be done (oh, and yes, surgery on her g-tube and possibly tubes in her ears and possibly surgery on her eye. . . but that's NOTHING compared to what my crazy mind was conjuring!) It's all good!!!! :)

Thursday, October 7, 2010

From the words of a big brother and sister

"Moving was hard, but it was really hard for Chloe in her first 9-weeks-of life. I only hope the best for all the kids with Down syndrome. Especially those that are new-to-life." by Xander

"I love Chloe. I will kiss Chloe. Her g-tube fell out. That's the end." by Sadie

Plum Tuckered Out

This is Chloe after her appointment with surgery today. So we have a plan. . . sort of. It involves some waiting and some what ifs and some more waiting, but still, there's a plan.

Since the g-tube site is not really leaking too much we have the choice of waiting awhile longer to see if it will close on its own, or going ahead. I'd just assume get this taken care of so we can get on with life as usual. But she's just had a cold, so we have to wait at least 2 weeks since her cold to make sure she's good to go. She had labs done today (hence the adorable doll in Chloe's sleeping arms given to her by the phlebotomist) so we also have to wait for those to come back since she's been having fatigue. The surgeon also wants to talk to Chloe's cardiologist to make sure she doesn't have any objections (which we doubt). Then the last piece to this ever so complicated puzzle, is ENT. As I said yesterday the doc wants to get in while she's under and clean things out and investigate further whether or not she'll need tubes. He's also getting back to me on whether or not we need a sedated hearing test, which would complicate matters (scheduling anyway) even further. But I have no worries. I expect it to all fall into place.

The procedure takes about 30 minutes, followed by about 10 minutes for the ENT and then another 45 minutes for the sedated hearing test, if that's necessary. So about and hour and a half total if they do everything. I'm not even going to worry about her eyes right now. We'll deal with that in November. I'm not sure it's the type of thing they'd do surgery on soon or it's really something more down the line. And I think they do it right in the docs office. Should be no big deal.

That about does it for the update. Hopefully I won't have much more to report over the next week or so except that her blood work came back great and that we all got coordinated and have a surgery date! Otherwise I expect things to be quiet!

Wednesday, October 6, 2010

ENT Update

Just wanted to show off this adorable outfit my aunts got for her that she FINALLY grew into. Isn't it just the cutest???!!!
Now for the update. We saw her ENT yesterday and he was actually pleased with what he saw. He really didn't see significant fluid when he looked and he's still inclined to wait on putting tubes in. He doesn't feel that the tests that show the presence of fluid are that accurate in children with Down syndrome because of the make-up of their ears, so he prefers that we wait. He DID, however, want to "get in on it" if surgery is going to be putting her under for the g-tube closure. At the very least he would like to get in there and clean them out and get a good look at them and then if he feels it is necessary at the time, put tubes in. The other question on the table is if she IS put under, should the newborn screening test be done because a) we're not sure if it was done originally and b) they may want new results and if she's going to be having a procedure done, now may be the time to do it. Sooooo, we go to surgery tomorrow and find out if they are going to indeed schedule a closure (which I'm not sure about since she hasn't leaked for several days now) and then we shoot for one-stop-shopping and try to get all this done at once! I'm feeling a little like there are a lot of balls in the air right now, but everything DOES seem to be falling into place.
Oh, and I finally talked to her endorinologist who said she doesn't think she needs to be switched off the generic (should have argued for it, but didn't) and agreed we could order more labs. So after her surgery appointment tomorrow we will go for a blood draw for the thyroid screen and CBC. I expect everything to come back normal as the fatigue seems to be going away. Maybe she just had a virus, or as my mom suggested, is sensing all of our stress in the house (having just moved and not being able to sell our old house, etc., etc.). I also got her an appointment with her eye doc as her eye (and maybe eyeS) is turning in more. Now I'm sorta wondering if they can do THAT while she's under too. . . hmmmmm.
okay, I'll try to update tomorrow.

Monday, October 4, 2010

Feeling a Little Overwhelmed

I think I'm out of practice. All these doctor appointments and phone calls and coordination of blood draws. I'm not used to Chloe requiring all this stuff lately. She's been so . . . well. . . "healthy" lately. Not that she's exactly "unhealthy" now, but she's certainly got a lot going on. Tuesday we see her ENT to determine if she will finally require tubes. Thursday we see surgery for a pre-op appointment to close her g-tube (yes, it's been leaking again). I also had to schedule with her eye doc because her eye is turning in more then it was before. And, at some point I have to get a blood draw since she's been having fatigue (which I suppose I'll do on Thursday just in case surgery needs any pre-op blood too). Okay, I think that should do it. I guess it's not THAT overwhelming. Just gotta keep it all organized in my head and on paper. I know, this too shall pass and then we'll be back to "normal" (whatever the hell normal is!). Wish us luck with all our appointments and HOPEFULLY if she needs tubes AND the g-tube closure, they can coordinate and do it together. Stay tuned. . .

Sunday, October 3, 2010

The Never Ending Story

Chloe's g-tube continues to be a never-ending story around this house! It goes DAYS without anything and then it'll leak again. So I'm putting in a call to surgery tomorrow to let them know it's still leaking. It's weird how it'll go for days with nothing and then it'll start leaking again. We'll see what they have to say tomorrow.

The "bowel" issues seem to have resolved themselves as soon as we stopped giving her the recalled formula! Coincidence? I think NOT! Whatever, I'm just glad she's feeling better and eating better. I know she was starting to lose a little weight.

As for the fatigue, I never heard back from her endocrinologist re: her thyroid. I'll put in another call on Monday. I want her switched off the generic and I want a CBC done.

We see her ENT (Ear, Nose and Throat) on Tuesday so we'll hopefully know the story about whether or not she needs tubes. I think this week will lead to a lot of answers. Her g-tube, her ears and we'll start to get to to the bottom of her fatigue. She's been a busy little girl, hasn't she?!