Raising Chickens and Special Needs Kids

[N F C]

That's just what she did at first, too! Like it was a shiny new car and she couldn't get enough of marveling and touching it! After that, the squeals started!

She just loved it......she had a rare melt-down when they took her out of it but she'll figure it out.

It was incredible of the district, Debby! Hope it lasts - they had one for another child, Tyler, (who has since moved on to middle school) on the other playground but the bigger kids destroyed it by roughhousing on it. Jenny talked to the principal about that this morning, but she was told that they can't and won't keep other kids from using it. So we'll see. I have never liked this principal, even way back when Jamie and Little Diane were at Rocky Elementary. She has all the compassion of a goat. When Jamie was being bullied and finally had a breakdown in the library about having been abandoned here by his mom, her reaction was, "Well, we all have to live with some disappointments." Yeah, big help! So I went to the school district and councellors (over her head) and she's never forgiven me. She had nothing to do with getting the swing and the space - that was all done over her head by the school district and the IEP team. So if that swing gets torn up, Jenny and I have no problem demanding it's replacement under the Child with Special Needs act, and we'll do it over and over again until they finally have the playground monitors put a stop to the destruction.

In the meantime, what a joy it's going to be for Kendra to play with her classmates at school! They've also ordered a set of parallel bars, sort of like monkey bars but without the crosspieces, and will be installing those at arm height so she can use them to walk from swing to slide, etc, rather than have to be carried or put back in her chair, wheeled over there, then taken out again. With spotting, she's already learned to go up the ladder on the little slide, hold on and get herself seated, then slide down. Of course it means poor Miss Pam has to spot her going up, then get to the platform and spot while Kendra sits, then hightail it to the end of the slide to "catch" her, but she gets such a kick out Kendra being able to do that she doesn't mind a bit.

I ran into a few of those types when my boys were in school too Blooie. Fortunately, the good ones outweighed the bad ones. But boy, wouldn't you just love to be able to smack the bad ones sometimes

 

[Blooie]

Oh YEAH......but we'll just bide our time. If this swing lasts, great. If not, then she just gets to see more of me than she used to!

 

[N F C]

Oh YEAH......but we'll just bide our time. If this swing lasts, great. If not, then she just gets to see more of me than she used to!

 

[Blooie]

Spent a long night in the ER with Kendra last night, teaching medical professionals what a MACE and a Mitrofanoff are. Kendra's MACE tube pulled out of her colon. <sigh> Usually it only comes out about 3/4 of an inch if it catches on the waistband of her pants just right and she flat lets us know immediately. She suddenly sits rock still and starts saying, "Honey,honey honey" and "whoa, whoa, whoa" over and over again, then screams when we push it back in. But last night it pulled out almost all the way.

The MACE access is a corkscrew type catheter that runs from the plastic cap on her skin down into the tube they made from the appendix and goes into her colon. It looks almost like a soft rubber spring. It starts out as a straight soft catheter, and then further down begin the coils...a lot of them...and they are wound pretty tightly. The coils are to prevent it being pulled out. Yeah, they didn't work. It pulled out a full 3 coils! Jenny and Kenny got it back in to the first coil, but it was a battle with them trying to hold her down and get it twisted back down the rest of the way. But it wasn't going one bit further and remained hanging out 3 inches, with the first coil up against her skin. She was NOT happy, and the kids were beginning to panic. They called me. I ran over, took one look at it and knew that we were out of our comfort zone big time. Jenny called our local hospital and tried to explain what was going on, but they had no idea what she was trying to explain. So we bundled her up and took her in.

So after I googled MACE for them on my phone so they could even chart it, the phone calls began. The kids' instructions were pretty clear...if it ever did that they were to try to get back in and if they were unsuccessful they were to take her in the nearest ER and have the attendings call Denver, using the direct line to the clinic, even after hours. So the doctor we saw last night called them and it took just minutes for them to return his call. They had him take photos of it, then text the photos to Denver, which he did. They took one look at the photos, called the doctor back and said, "Get it out of there...just pull it out but do it right now, then get a Foley in there to keep the stoma open." If they couldn't get it out or get the Foley inserted, then Jenny was supposed to leave for Denver immediately and have Kendra at clinic first thing this morning.

That poor attending doctor looked like he'd rather pull out his own fingernails. They talked about sedation and pain meds, but he was nervous about that with her other issues, plus the fact that she'd just eaten a full supper. So they brought in 5 nurses to hold her down, and made me and Jenny step outside (in the 29 degree temps, by the way) so we wouldn't hear her scream. Jenny called Kenny to give him an update while we were out there, and I had a smoke (not one word!!) then we headed back in. They were waiting for us. Turns out they didn't need the extra nurses...she didn't fight them, she didn't cry, she didn't scream...she just laid there. Oh, sure!! So the MACE is out, a Foley is inserted, and Jenny has to move her scheduled appointments up from December 22 to a closer date today. What a night!!


Ignore the tube going into her belly button...that's just the Mitrofanoff catheter immediately post-op and that's been long gone. The plastic rectangle on the upper part of the photo is the MACE, a little plastic button that opens up to allow the enema access. This is how it's supposed to look.


Waiting in the ER while the local doctor talks to Denver.


This is the MACE pulled partway out. See that first coil right against her skin. Um, that ain't supposed to be there, and there were more behind that one that were also pulled out before the kids got them screwed back in. And that plastic cap is supposed to be against her, not dangling there. Yep, long night last night!

 

[Bunnylady]

Oh, wow, Blooie! And I thought I had a rough night last night!

I hope you are all feeling better and a lot more calm and rational this morning. Kendra is such a trooper - give that little sweetheart a hug for me (and here's one for you, too!)

It sounds like this is an ongoing issue; I'm sure you are googling like mad to try to find some solution that will reduce the chances of it happening again. Praying that there is a good answer just waiting for you to find it!

 

[N F C]

All of you must be exhausted after all that Blooie. What a brave little girl Kendra is, I'm sure her being so cooperative was helpful to everyone working to remove it. Good luck to Jenny on getting the appointment moved up, late December is no time to travel around here anyway...the sooner she can get in, the better.

 

[TexasLisa]

Wow Blooie! What a nightmare! Thank goodness you were able to get a hold of the doctors in Denver! You ALL did a great job in handling this mess. Give Kendra a hug from Ken and I. Bless her little heart.

 

[Blooie]

You know, it's funny. The entire reason we have the pulling out issue is because Kendra's Spina Bifida is in such a gray area. She needs the wheelchair, but she doesn't.

She does this bunny-hop instead of crawling, and her pant's legs fit inside her braces so when she does that her pants start to inch down. She climbs up on the furniture. She likes to do headstands. She's so cotton pickin' active!! We love this!! But when all of this climbing and cruising and bunny hopping is going on, she's also slowly pulling the waistband of her pants down, it catches on the edges of the Chiat (that's what the plastic button on the MACE is called) and slowly pulls it out too. We've tried about everything to cover it to protect the edges from catching on her clothes, but eventually even that pulls down with her activity.

I am going to sit down at the sewing machine today and try to make her a special cover for it. It will be very similar to what they have available for kids with G-tubes, but designed more for the rectangular shape of the Chait rather than the round access button on G-tubes. I was thinking that if I edge it with a very light elastic, it might hold better than just fabric. Wish us luck!

Yeah, Debby, I don't want the kids traveling then either. The problem is trying to get all of the clinics she has lined up. She has neurology, orthotics, Spina Bifida clinic and urology when she goes down there. Coordinating it all so they can do the MRIs and see all of the doctors can be a pain for Denver and for us.

 

[Blooie]

Hugs for Kendra all around, coming up! She's one incredible little girl, that's for sure!

 

[N F C]

Blooie, if all the appointments can't be coordinated around an earlier date, than I'll keep my fingers crossed for a non-white December so travel won't be risky