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.

Eight Weeks Home, Christy Update!

Taking a nap at the park just last week!

I am shocked and surprised at how different her second month home has been from her first month home. Christy's first month home was mostly spent at home, where as the past 4 weeks have been insanely busy!  I am also shocked at how badly I did at taking photos of Christy (or anyone around here for that matter!).  I will have to do better!

Christy had an appointment with the ENT (Ear, Nose and Throat) specialist.  He said that someday she'll probably need her tonsils and adenoids removed since she does snore often, but that she felt that she was on the small side and thought waiting was the better choice, but also said that we might consider getting a second opinion at Children's Hospital in Seattle.  We talked it over, and due to her sinus congestion waking her more and more frequently as night, we feel that she needs to see the ENT at Children's.  This referal has been made, but I have not gotten an appointment yet.  After seeing the ENT her pediatrician wants her to also have a sleep study done.

Christy giving one of her goofy silly looks - this was taken yesterday

A couple days later Christy got to go with us to a local park to play with friends while the big people played volleybell.  Christy did so very well there, but did NOT like the swing (you know the one that is like a bucket with holes).  She was happy to hang out in her stroller or play on the grass.  She did manage to get over into the sand, but this mean mommy took her out before she could eat any!

The next week was very busy for me (Esther had a pre-surgery appt at Seattle Children's) and our family (we had a stomach illness run through about half of the family, but just one or two people at a time).  Christy had her first Physical Therapy evaluation that week too.  We found out at that appointment that it would be best to wait to get braces for her legs (to limit the range of motion as her knee are double jointed) until after she has learned to crawl.  As long as she is not weight bearing, she will not be damaging her knees.  Once she has learned to crawl, then we will be getting her braces to wear when she is practicing/learning to walk.  We have some exercises to do with her now to strengthen her legs and arms to prepare for crawling.

First time in the pool....

We had a busy Fourth of July weekend, with relative from out of state visiting in the area.  Christy got to go the beach for the first time, but it was very windy and she didn't like it at all.  She just wanted to be held.  Then we went to a family reunion (Daryl's family) at another park and she did much better there, but like best to be in her stroller.  

Last Tuesday we went to another park (Esther's Physical Therapist has recommended that we take her to parks frequently to help her built coordination and strength - and it's working!).  Christy was tired when we arrived (it was lunch time) so she took a nap in her stroller - first time she's ever done that!.  Someday I hope that she will begin to be able to explore parks, but right now it's really hard since she is limited to scooting around on her bum, and she puts everything in her mouth (a really bad combination since she has a very poor coughing ability so choking is a very real hazard for her - even here at home).

She Loves It!

Yesterday Christy was evaluated by our favorite speech therapists, Elaina.  We were greeted with excited hugs as we haven't seen her in a long time (Esther and Dayton both have seen her in the past).  Elaina confirmed that Christy does have some eating coordination issues and is also concerned with me that she is not gaining weight very well yet.  She has given me some things to do with Christy during meals to increase her awareness of her mouth, work towards self feeding and learn to drink thickened water from a cup.  I am also teaching her to sign "eat" and will work on saying "eat" and "water" to her when I am feeding her.  Elaina really wants to see her regularly but has a long waiting list.  They are going to try to get her on the schedule soon.

And Esther Loved having her in the pool!

Yesterday Christy experienced our pool for the first time and she loved it!  She loves taking a bath, but I wasn't sure if she'd like the cooler water.  But we've had an unusually warm summer so the pool isn't too bad.  She will definitely be following in Esther's foot steps and become a fish.  Carese, on the other hand wants nothing to o with the pool!

Christy has been staying at home more recently, but that is going to change as she has lots of appointments in the next few weeks - her dental evaluation at Children's. Physical Therapy once a week, plus our annual week long camping trip!  Plus we will making more appointments for her dental work and seeing the ENT.  

My baby girls, in PJs but not ready to go to bed quite yet!

Overall, Christy has been exceptionally healthy and has adjusted very well to our home and life.  I have found that she enjoys shopping when she is in her stroller.  Generally speaking, away from home her safe place is her stroller.  At home she loves to explore and even enjoys spending time in the yard and swinging on the swing set (in HER swing of course).  She gets lots of attention and enjoys play.  Hearing her laugh is just THE BEST!

 She also allows me to hold her hands together when I pray with her at betime - before she would resist and get mad at me!  The funniest thing is that she LOVEs to get dressed and undressed.  She giggles and giggles.  I will have to videotape this somehow.  She is getting very fast at scooting up to someone and raising her arm(s) to let them know she wants to get picked up.  She will even chase you down if you are avoiding her (for fun, of course).

All tucked in and ready for bed!

She is a very content little girl.  She rarely cries.  She usually has more of an angry cry when she gets hurt or is in pain.  It is a strange cry - almost animalistic.  Its almost like a panic kind of cry.  It is very sad to hear and really hard since we quite often do not know the cause - she just can't tell us.  Even when we know the cause (like if we see her fall over and bump her head), it's hard because it's almost as if she doesn't understand how to receive comfort.  But she is improving in this area somewhat, and I'm sure with time she will come to understand and receive comfort from us.

 Christy and Carese are nearly identical in size.  Six weeks ago we found out that they were less than 1/4 in different in height and less than 3 oz different in weight.  Christy really has not grown noticeable yet so they are still like twins.  They wear the same size clothes (you can notice that Carese is wearing the same PJS that Christy is wearing in one other photo).  For a while, all the winter clothes were put on Christy, and the summer clothes on Carese.  But as the weather has warmed up, I am dressing Christy in lighter clothes so they are being dressed more similarly now as a general rule.

And now for two videos!  The first one was of Esther and Chrisy playing together, really for the first time.  This has been the biggest change in Christy's life in the past month.  Esther no long ignores her and actually loves to play with her.  At random times we will find Esther sitting down next to Christy and just giving her hugs - it is so sweet!

The second video is ground breaking stuff!  Christy is slowly but surely gaining more use of her right leg/foot and arm/hand!  In the last video, you will see her use her right hand/arm to shake a rattle!  We did have to put the rattle in her hand, but she kept it and moved it enough to create sound, and she knew she was doing it!  This is miraculous!