Before I forget, in my telling you about the kids, PLEASE, PLEASE, PLEASE lift Matthew up in prayer for us. We are just about at the 3 weeks *mandatory* countdown to his fistula surgery (failed cleft palate surgery failure) and urological issues.
From the MOMMY files:
As the time grows closer, I tell ya, as a mom, it scares the hebbie jeebie's outta me that I will be able to walk with him to the operating table, put him down, and they administer "sleepy" stuff to him and watch him drift off to neverland. So many things run through your mind. Will he wake up? Will something happen? Will he have an allergic reaction? Will he hemorrage? Will something go wrong? Will they find something MORE wrong with him then previously thought?
Oh wow, don't get me started. My mind races, trust me. I need to concentrate on Matthew but at the same time, Rebecca is having a birthday party in just under 2 weeks after Matthew's surgery. I'm trying to get things done beforehand. Even gathering SOFT foods for Matthew, but it's going to be hard. Little Matthew LOVES, and I mean, LOVES food. ALL KINDS OF FOOD! Restricting him to liquids and having him in arm restraints for 3 weeks is NOT GOING TO BE EASY BY NO MEANS! I've also been told that those arm restraints are NOT to come off, even for bedtime! *should get some earplugs now* (note to self, CVS around the corner) :o)
I know that Dr. Murthy (plastic reconstructive surgeon/Craniofacial team) and Dr. Kalloo (the lady urological doctor) are awesome and VERY capable of helping Matthew. I have complete confidence in them, but there's that darn BUT! Prayer. That's all it is to it, prayer.
For 4 hours, on September 10th, at Children's National Medical Center in Washington, DC, starting at 9am I will be doing nothing but praying for Matthew. And I won't stop until he's out of surgery...........which they say will be at least 4 hours later. *You wanna join me? BE MY GUEST!* (Mapquest works wonders)
Ok, I need to stop here. I'm rambling, my thoughts are everywhere and I'm about to cry my eyes out.
Surgery lab work starts in about 2 to 2 1/2 weeks. We truly need for Matthew to have NO FEVERS, no sicknesses, and NO ear infections (which have been quite common since we've brought him home in March 2007). Just no NOTHINGS wrong with him so the surgery will proceed as planned. *trust me, it took awhile for the teams to get together for this surgery, so PLEASE LORD, let nothing hinder it! Please!*
Stay tuned...........
Ki
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2 comments:
Matthew will be in great hands at Children's. My daughter had palate repair there last year when she was 4. I only used the arm restraints in the hospital because she could understand the consequences of putting anything in her mouth. She was
so disciplined that when I gave her ice cream scoops on a cone, she would lick the ice cream until she got to the cone level and stop. You may need to keep the restraints on since your son is younger but I've heard that they aren't too restrictive.
If possible try to take the presurgery hospital tour that they offer on Sunday afternoons. It helps to alleviate everyone's anxiety, and siblings are encouraged to come along. It helped my then 8 year old a lot to be able to envision what her sister was going through when she was gone.
You may not experience this because Matthew is having a second long procedure but if the palate is repaired last be prepared to see a fair amount of bleeding from the mouth in the recovery area. We spent several hours in recovery so they could get the pain level under control. Once we were in the room, my daughter only had Tylenol periodically.
When they bring the food the next morning, be prepared for the liquid meal that they provide to not be truly liquid (unless they have fixed that based on my feedback). They even provided a spoon, which a less aware parent might have used, thinking it was OK because it was on the tray.
Make sure you have a good blender. My daughter particularly liked
blended broccoli soup, blended hamburger (add beef broth and
ketchup), blended chicken and rice casserole (add chicken broth),
noodle soup, instant breakfast drink, jello, yogurt drinks, ice cream, and smoothies. Sometimes when we have hamburgers for dinner, she still asks for hers to be blended. I got her a special tall Princess cup and that became her "plate" for the three week period. Our 3 weeks ended right before Christmas, but if necessary I would have blended her turkey dinner. Virtually anything can be blended, with the help of some broth or other liquid.
Good luck. Feel free to e-mail me at delklinger@verizon.net if you have any questions I might be able to help with.
Donna,
Thank you so much for your input! Thank you!!! You have given me more ideas for my son's meals and the heads up in the hospital.
I would like to take that pre-surgery tour of the hospital and see where we will be and where things are. (only have been to the cafeteria and the Craniofacial teams area for the most part)
Anxious? Yes. My Matthew loves food! I mean, LOVES FOOD! Having it blended just doesn't seem like much, but that is all he will be able to have for awhile, as we don't want to go through all of this again.
Lord willing (and the creek don't rise *pretty dry around here*) Matthew will be just fine and feeding him will go well. Arm restraints? We'll see. I'm sure he won't like those either. (I wouldn't!)
We must do what we have to do.
Thank you so much Donna, again.
I just might email you.
Kristen
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