Wednesday, October 8, 2014

Two Weeks of NG-Tube, Seemingly No Closer to G-Tube Placement

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!
I've heard a few of my readers don't like my long posts, but I know that others like the details. So here's the Cliff Notes version:

- 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!

Good morning! It took a long time for her to get to sleep after being rudely awakened after just falling asleep right after pulling her tube out...then having that mean mommy put it back.  It took hours of mommy rocking and singing to settle her down.  So glad she has a mommy now when she is so very, very sad!

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!
But back to Christy being Medically Complicated!  Overall, Christy is quite healthy - she has not suffered from even a cold since we came home in spite of our family having three colds and two stomach viruses since she came home.  It seems she has a great immune system in place, and that is good!

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!
 In the past 2 weeks she has gained over 2 1/2 pounds!  She is sleeping a little better and the dark circles under her eyes are much lighter now.  She take shorter naps too.  She still suffers from reflux, but it is better than it was when I was pushing thickened liquids via mouth.  She is also now running 99 - 100% on her oxygen levels, whereas when I was pushing thickened liquids via mouth, she was running between 92-95%.  This proves that even with thicker than pudding level thickened liquids she was still aspirating at possibly every meal.  And she was loosing weight and tiring easily.

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!
On Thursday after many phone calls and no one being able to get in touch with the surgeon for answers, the nurse suggested that we come to clinic tomorrow and get to talk with him face to face.  So we scheduled that and I also requested that we get an appointment for Christy in the PASS clinic.  This is a pre-surgery appointment where you meet with the anesthesia staff and they evaluate your child to see if they are in good shape for surgery and to address any concerns that anyone (parent or medical staff) might have concerning having the child sedated for surgery.  I am so glad we did this last Friday (didn't plan to go down there again until Thursday, but it was needed in order to confer further with a hard to get a hold of surgeon, and to prove that Christy was indeed doing so well on the NG-Tube)!  The anesthesia team is very concerned about her Obstructive Sleep Apnea (OSA), and that is they only place the G-Tube in her first surgery, her tonsils/OSA may make is very hard on her in recovery, maybe even cause a crisis.  So they wanted to recommend having her tonsils/adenoids  (T/A) out first, or at least having both procedures done at the same time.  So she said that she would talk things over with the surgeon and ENT doctor and get back with me early this week.
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!
Earlier that day when I met with the surgeon, he said that he really would like to see Christy have a swallow study done at Children's and that in all likelihood, they would be switching Christy to Neurodevelopmental (ND) for her medical home, which might require them to see her in clinic before they would do that.  Bummer!  Another trip to Seattle.
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!
On Monday I got a call from the ND clinic and it was even a doctor! Dr Lisa called to see what I understood as to what was going on with Christy and with Children's and why she needed to be seen there.  She also agreed that a swallow study needed to be done.  She also wanted us to see a nutritionist to go over her nutrition now that we've had the NG-Tube for a while.  But she also said that they were scheduling into December, but that she would work to get us into the schedule in the next few weeks.  Within a few hours, I got a call back that she could be seen for all three appointments in two weeks.

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
Time will tell.  At this point, we have figured out how to prevent Christy from pulling out the NG-Tube, but it was been a huge learning curve.  My experience with Esther having an NG-Tube was limited to a newborn who had very little control over her limbs.  Christy has lots of control over most of her limbs.

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!
We keep an arm brace on her left arm most of the time.  She does not seem to mind this and is thrilled when we take it off.  This has also led to her using her right arm more and that is a good thing!  She has also successfully pulled the feeding tube out with her toes, so now she wears tights of footed pajamas all the time (she pulls socks off in seconds!).  We also have to keep her arm brace under a long sleeved shirt as she will pull the velcro strap off with her teeth and shake the brace off in no time!  So after learning these lessons, she has not been able to pull it out since last Thursday morning.  So it is getting easier.

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!
So I have two weeks of normalcy - only appointments for therapy one day a week!  I so need this.  At first I was frustrated and bummed for the seeming delay for the next step, but since then I have seen that I need some time to just be home.  I'm worn out and tired and stressed and all that leads to being further worn out/tired/stressed.  So I'm going to make the most of this time and do a few things at home that I have been unable to do since the beginning of September - get caught up on things like laundry, getting school underway for my kids, doing therapy/preschool with Esther and just being there for my two year old who needs her mama!  Of course that will all be happening between feeding Christy 3 healthy meals per day by mouth, and three tube feeds via her NG-Tube and feeding pump.