Anyone will go to the TCH clinic January Monday 14 or Surgery Monday 21?

[Jocelisse's Parents]

I will like to meet some of you who will go any of these two Mondays to the Texas Children's Hospital. Jocey will have appointment with Dr. Nath Monday 14 and surgery (muscle transfer)Monday 21. Also she will have another apointment Friday 18 at the Baylor College with Dr. Klebuc. He is the Dr. who will be performing her muscle transfer.

[christy]

Hi!

I didn't realize that she was going to go ahead with the surgery. We won't be there (thank goodness, for awhile) but we will keep you in our prayers.

Can I ask what changed her mind?

[christy]

Sorry..I didn't explain. I only ask as I know the rest of us are someday going to hit that point when we know the kids need such and such but they say no more. It might help if we know how you handled this.

thanks

christy

[Jocelisse's Parents]

Hi Christy

Something who help us a lot was a photo she saw from Maia at the recovery room, she got magic sparkles on her arm. Jocey asked if she will get those sparkles too. We told her sure you will. I have to ask to Francine how she did it? if she bring the sparkling paint to the recovery and they prepared it there or if she had it already done and stick it before Maia weak up.

We has been talking with Jocey. Definitely that is the most important step. We have a good communication with her. She said how she feel always, if something wrong happened at school she always let us know. She is only five but is very mature and smart for her age. We explained her before the Mod Quad she can't reach the top of her head and now she could do it. She said like "well is right was a little painful but I can't have a better range of motion now". We told her they will give her some medicine when she need it for the pain. Also about the scars and the little hole they will leave on her arm. We explained her will be for monitor the grow of the muscle but they will do a reconstructive surgery to close the hole and diminish the scars into the fallowing three months.

Also we started to prepare her for the summer surgery this will be for stabilize the wrist. In a period of six months she will have three surgeries and two muscle removed from her legs. Is not easy how you could tell something like this to a kid but she know it yet. This is the only way for she could understand "after the next surgery I will have two more surgeries". Because after the Mod Quad we never told her about the probability of more surgeries. But we learned the best way to work with your kid is explaining them this will be a long process where they could have surgeries when also when they turn in the teen age because the Drs. may be stretch their bones to make the BP arm more similar to their other arm.

I got an appointment with a psychologist at the TCH by my self because I left a message to Lisa Davis but she never answered my back. Maybe was the holidays recess. I called the receptionist at the TCH and I asked if they have psychologist for kids with cronic illness. She transferred me to the psychiatric department is where are the psychologist. They ask me for a referral but I explained them what is going on with Jocey and they told me to bring her for her first evaluation this Wednesday 16 without referral.

Big Husgs,
Ivelisse

[Missy]

Good luck to you on Monday for your appointment with Dr. Nath and I'll especially be thinking of you on the 21st when your daughter is scheduled for her surgery. Blessings to your family!

Missy

[francine]

Ivelisse - well I'm so happy that the sparkles will help Jocey -It's Elmer's glue sparkle pens - they come in a tube - (near the Crayola stuff in the store) and I put them on in recovery when Maia was still asleep... But you see before I did this, the week before I told her that the doctor would be putting magic sparkles on her arm to make it stronger...and we did teddy bear surgery and she was Dr. Maia and applied the magic sparkles to her teddy bear. The glue was wet when I put it on but she couldn't touch it anyway so it dried and didn't cause a problem. I didn't put any on her skin - just on her bandage. And I also put some on her arm strap of her capsulodesis splint, too so it's a continuing theme here.

The one thing I wanted to tell you - especially because Jocey is older now and knows that she will be having more surgeries is that maybe you should think about getting that morphine PCA pump for her in recovery. This really made a HUGE difference for Maia - bigger than I could have imagined. They hook up this pump directly to Jocey's IV - and you can push the button on the pump for Jocey every 20 minutes or so and it gives her a small dose of morphine.

Last time Maia had surgery, she got morphine but it took so long to wait inbetween doses that she would never make it to the next dose before a panic set in and severe pain. So being able to dose her with small doses all the time, kept her very balanced and she came "out of it" very easily as compared to last year. It was no where near as traumatic as last time.

We dosed her a lot - right on time for the first few hours (you could tell when it was close to 20 minutes becuase she would start crying) - and then as she started to last longer, we slowed it down. She barely needed any that night and the next day we dosed her just before splinting and then the IV fell out and she was done. It was a very humane way to help her with her pain and I highly recommend it. By having this pump you also set up a relationship with their pain management group - it was nice to have that extra support - knowing that someone was looking out for her in time of pain.

I know this is a hard week for both of you and I know that you are very worried about the risk of this surgery. Maia and I will be actively praying for Jocey this week and until after her surgery and we will light a candle for her, too.

Big hugs,
francine

[christy]

Thank you Ivelesse. And your family will be in our prayers. I was concerned because I know that she needed it but had not wanted it and you two are so respectful of her.

I didn't know about the hole being left. Maybe I don't want to know, maybe it will be better if I wait until we get there.

God bless and I think we could use that consult as well. Keep us posted please.

thanks

christy

[Jocelisse's Parents]

FRANCINE

When did you ask them for the morphine pump before the surgery or the surgery day?

Thanks to all of you who posted here for your support.

Jose and Ivelisse

[francine]

I emailed Dr. Nath and told him that I wanted a consult with a pain specialist for Maia because the amount of pain she was in last time was just unacceptable and I didn't want her to experience that again. He told me to remind him the morning of surgery - that we would consult with "pain service" at the hospital. We spoke about it that morning with the anesthesiologist and Dr. Nath and the anesthesiologist that was in the OR for Maia (Dr. Nancy Glass) is the person who also 'leads' pain service (lack of better word). She made the decision that the pump would be the way to go (as long as we never left Maia alone, which we wouldn't do anyway). Within just a few minutes of her being in the recovery room, they hooked the pump to her IV and a pain specialist nurse came to check on us immediately and returned many times during our visit. They put Maia on 20 minute intervals for pressing the button and I understand that if 20 minutes was too long an interval they would have shortened it down - I think the max is one dose every 10 minutes.

So I would discuss this with Dr. Klebuc and/or Dr. Nath as soon as possible and definitely the morning of surgery.

It will help her so much! (as long as you keep pressing the button and keeping her on top of the pain)... actually that's the key - staying 'on top' of the pain - never letting her dip down too low so that you can never get quite back up - do you know what I mean?

-francine

ps I sent Jocey sparkles today!