Wow - two weeks of insanity, my new lifestyle with a medically complicated child.
|She is asking her hand what she should think about mommy feeding her with a syringe....this was very time consuming so|
I requested that we go home with a pump, and that is exactly what we did!
- NG-Tube trial a success
- Christy needs tonsils out at first surgery to avoid problems coming out of anesthesia due to her obstructive sleep apnea
- Christy needs medical home to be Neurodevelopmental Clinic at Children's Hospital.
- She will be assessed there in two weeks, as well as getting another swallow study and meeting with a nutritionist
- Best case scenario is tonsils, adenoids and G-Tube surgeries all together and hopefully in early November.
Scroll down for lots of photo and all the details for you detail loving readers!
|Mommy invented a new way to secure the NG-Tube - make it a part of the hairdo!|
|Oh SOOO happy to see Daddy!|
|Mommy! Look, Daddy's Here!|
So, back to my opening statement....Yep - that is what they refer to Christy as..."Medically Complicated"! This is much better than medically fragile - that is what Esther was until after her heart surgery at 3 months of age.
But that didn't stop us. No indeed. What did we do the day after getting out of the hospital? We took everybody (that still lives at home) to the Pumpkin Pitch in Burlington! Even Jessica's fiance came along!
|Sweet Jon - swept Esther off her feet and carried her out into the field to help her find candy! |
Jessica has got herself a winner with this guy!
|The crew - our youngest 10 children plus Jon! We make a crowd all by ourselves!|
|Christy seemed to be very happy to be out and about that day, |
as long as we kept her out of the wind!
|Oh the Joy of grass, fresh air and freedom!|
|Esther loved being out and about too!|
By feeding her thick foods all summer, I was able to avoid causing her to aspirate and that kept her healthy. But that was at a cost of low level dehydration. Thankfully this did not compromise her health. But if we had continued this routine, it could have. So now we are giving her fluids and extra calories through her NG Tube and it is working beautifully so far!
|Carese enjoyed this sucker|
for a long time!
So she has passed all the requirements with the NG-Tube that show that she will benefit from having a G-Tube placed. But we can't schedule it yet.
|Christy No Like EEG! She almost got her |
NG Tube out with all her wiggling around!
At Seattle Children's they have a new protocol - a child need a medical home (a doctor/clinic) who will take the responsibility of ordering the surgery and for follow up care. Originally they had assigned her to pulmonary, but since her O2 stats improved so well in response to discontinuing her fluids by mouth, they no longer felt that that was the best place.
|Everyone enjoyed the Buddy Walk again this year!|
|Christy with her NG Hairdo and her knew Hello Kitty G-Tube enhanced back pack!!|
Being out and about with an NG-Tube - no problem, just have to plan ahead!
|A photos is worth a thousand words....these two are becoming fast friends |
and Esther likes to comfort Christy when she needs it!
|Having an NG Tube does not mean she doesn't eat!|
She still enjoys eating three meals a day!
As of a few minutes ago, she is now scheduled for her T/A 2 weeks from Monday. If they decide it's best for her to just have her T/A done first all by itself, then it's all set up. If they want to combine the T/A and G-Tube we'll cancel that and schedule both together at a later date. If she has the T/A first she will most like not have the G-Tube place until December...not my first choice that is for sure!
So, here we are, doing the NG-Tube thing for an undisclosed amount of time. I'm guessing that if all goes well, she'll be getting her T/A + G-Tube surgeries at the same time and it will be sometime in November.
|chicken alfredo with spinach....|
nasty looking but she liked it!
|thickened peaches on the left, |
thickened chicken alfredo on right
The first 5 days home after the NG-Tube placement, I had to put the NG-Tube back in 4 times. Not bad, and each time it was a little less traumatic for Christy, but I am so glad it's going so much better now.
|She now noticed by sight when I switch|
foods and wants to decide if she
will like it or not!
|She does not like peaches|
and she prefers not to eat pears!
|Monday I took the youngest nine children to the grand opening of an ice cream parlor |
and we all enjoyed some great ice cream and just going somewhere just for the fun of it!
It also was great motivation for getting the Monday morning chores done!