The holidays are over.
As great as they all were, I am SO GLAD to be able to get back to "normal".
I am actually excited about getting everyone back on schedule.
ahhhhhhhh
Let's see.
So in every day life these are the happenings.
A week or so ago Makily's button came out during a nap.
We did not discover it was out until we went in to get her up and so it was out a while.
I couldnt get the button back in, her stoma closed up too much.
She screamed bloody murder while I bawled trying to jam it in.
I tried an 18fr that I had on hand (one size down from her usual 20fr), same thing WOULD NOT go.
Makily and I are both in tears and Allen is pacing. I got creative and put a 14 fr suction catheter in there, while Allen seached the house for KY Jelly.
Do we have fun here or what? Thankfully after about half a tube of KY Jelly, Makily screaming, me crying and pushing I finally got the 18fr in.
Have I said how much I hate the button lately?
We are still awaiting the appt with GI to get her stoma "sized" to see if that's what's causing all the issue. It's in two weeks.
We went to ENT a week ago. They made us see the audiologist which I JUST LOVE (that was sarcasm by the way). Reason I HATE the audiologist is that Makily has a hearing screen each time we go and she NEVER passes it. She is a loud breather, and she will not do what the want her to. Then they go on and on about her not passing the test. I KNOW this kid can hear. She responds all the time. Well this time she did AWESOME. She reacted and responded appropriately for the first five minutes of the test and then she just giggled.
sigh
The ENT wants tubes back in her ears. Said they are full of fluid, tubes are out. So she has an appt January 23rd for that and another ABR (auditory brain response hearing test). ENT says he just wants a repeat one to compare it to her ABR from when she was nine months old. As long as things are the same or better then we won't have to do it again and we won't have to see audiology anymore. His concern is possible progressive hearing loss. He wants to make sure if there is something like that going on we can catch it now.
Tomorrow she has her cardiology appt. It's her yearly check. They will do an EKG and an echo. They would have released her last year but after her ASD repair her echo showed Mitral Valve Regurg that was not previously noted. They wanted to check it again to make sure it's not any worse. My hope is that it's resolved and we can be discharged from the cardiologist. It would be nice to finally lose one specialist after nearly five years!
All kinds of drama in J's case. Up, down, UP, DOWN, up, down. I am so tired of it.
He's worth it all though.
2 comments:
Sending prayers your way! Love, J
I don't know if you have tried putting something inside the button to make it stiffer. We have one that pops her ballon every 2 weeks. When we went to the ER, they put a cotton tipped applicator (the wood one-not the ones you clean your ear with) inside the button to make the tube more stiff. It made it much easier to get the button back in. You use the wodden end, not the one with the cotton. We use the suction catheters also to keep the opening from closing. That's where we spent New Years day.
Also, I sent a e-mail to you a few weeks ago about the split gauze. I have some bigger ones (4x4) Could you cut them down and use them? they were given to us and I have no need for them right now.
Marilyn, mom to many in Texas
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