Procedure Scheduled

Abby will be having her GI procedure Monday morning.  Her GI doctor along with a pediatric surgeon will be there to make decisions about her care.

They will start by doing an EGD (upper GI endoscopy).  She will be under anesthesia during the procedure so they can perform any surgery that might be needed.  The GI doctor spoke with us over the holidays to propose several different surgical options.  We won't know for sure what will be done until they get in her stomach and take a look around.  I'm most interested to know what her esophagus looks like as she has had esophagitis and gastritis in the past.

Her G-tube will likely be moved to a better position, away from her pylorus.  He mentioned placing a different kind of G-tube (low profile) also.

We are anxious to get this procedure done, hoping it will bring more comfort to our girl.

Behind the scenes things have been rough for Abby.  The magic juice (Carafate) has lost some of it's magic effect over these past several weeks, and her discomfort has been difficult to manage at times.  There have been some days that it seems we are just living for the next dose of medicine, doing everything in our power to make her comfortable.

We've had to completely stop giving her meds through the G-port (stomach).  In the past we were fearful of giving her meds through the J-port (intestine) b/c it has become clogged.  If this port clogs we can't feed her and it's practically impossible to fix without totally replacing the tube... which is another outpatient procedure at the hospital!  These past few weeks we've resorted to putting meds through this J-port b/c she totally comes unglued if we use the G-port (stomach).  (I'm sure this is clear as mud; I know it doesn't make much sense unless you are used to using G-tubes)


On Monday we will be at the hospital at 6 am.

One concern we have is with the anesthesia.  The past 4 times Abby has been sedated for various procedures/surgeries she has a dramatic increase in seizures afterward.  In April after she had the shunt revision she ended up going into status (prolonged seizure) the next day, which sent us back to the hospital.  Her VNS (vagus nerve stimulator) will have to be turned off during the procedure which also puts her at higher risk for problems.

Thank you to everyone who has prayed and continue to pray for Abby.  The Lord has been so faithful in every detail of this ordeal; from the wonderful doctor, to his nurses, to the hospital staff and their scheduling this procedure so quickly.  Our family who are willing to give of their time (and energy) to stay with the boys.  Somehow even with all the blessings I still find it difficult to trust that all will go well Monday and her problem will be fixed.

"We're not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be."
C.S. Lewis

I pray this verse over Abby:

"that he who began a good work in you will carry it on to completion until the day of Christ Jesus."


Philippians 1:6

10th Anniversary

(warning: long slide show!)


10th Anniv from patty hull on Vimeo.


Thursday we celebrated 10 years together!  I have 10 unique bouquets of flowers around my house (from my sweet husband) to remind me of all our blessings.

We spent the day reminiscing about these past years.  How can you sum up this amount of time in one post?  You can't.

A few land marks include living in 8 different places, 3 cities and 2 states, earning 3 degrees, having 3 children, Abby's 13 surgeries, 220+ nights in a hospital, numerous ER visits; owning: 4 vehicles, 4 motorcycles, 3 jetskis, 3 houses, 1 farm, loving 1 dog, traveling to over 19 states, camping a few times and learning deeply about this life.

The learning about life bit is where we find ourselves dwelling on the memories.  We've learned to cry together, hear bad news, wait, move, allow dreams to die, embrace new ones, rejoice together, work, read, make friends, build a home and rest together.  Most importantly we are still learning to pray together and trust that our heavenly Father is able to carry our burdens, wipe away our tears, provide for our needs and comfort us.  He is walking this road with us.

So many memories in what seems like a very short time.

This special day reminded us how thankful we are for the gift of a committed, loving and giving spouse!  And today as we start a brand new year, it's fun to imagine what new memories we will make together, as a family.

Merry Christmas!

Gastric Emptying

Wednesday we headed to Birmingham for Abby's test.  She tolerated the 4 oz formula bolus as best she could, although she did gag and retch several times.  We sat with her for an hour while she was lying under a machine taking pictures of her gut while it processed the formula.

(watching/listening to Dora)

(cute sea mural to look at while in the machine)

There was some confusion during the test about what we were seeing; however they sent us on our way after the hour was finished.  Abby was pretty upset the rest of the day.  While we waited at the Dr.'s office to be seen she was very vocal and obviously upset.  The bigger she gets the more unsettling and awkward this can be... especially in a crowded but cramped waiting room.  She did finally calm down after we gave her Carafate.

The doctor told us the findings from the test were perplexing.  The purpose of this test is to fill her stomach with formula and watch it empty into the intestines while measuring how long it takes.  For some reason Abby's stomach did not hold any of the formula, instead it went straight into her intestines.  After double and triple checking that they used the correct port (G not J), he concluded that her G-tube must not be in a proper position.  He thinks it must be too low near the stomach's exit valve (pylorus), so that anything put into this port directly irritates the valve, possibly causing some of her gagging, retching and general discomfort.

(stressed Abby, pulling her hair)

The more we learn about the GI system and it's complex workings, the more concerned we are as to how we might help Abby.

So, going back to the test... the doc thinks her tube might need to be moved.  It's possible that her G-tube has changed position with her growth.  It was placed when she was 9 months old and about 12 lbs.  Now she's 7 and weighs over 35 lbs.  I never imagined this could be a problem!

The plan now is to wait for him to discuss the test results with the radiologist on Monday,  and he will call us Tuesday evening to talk more about it.  One option might be to remove her current G-tube and place an NG (nasal gastric) tube for a few weeks while we wait for her stoma to heal.  The other is to schedule the surgery and just remove the old and place the new at the same time.  There is also evidence that formula coming from the J-tube is backing up into the stomach.

Needless to say we are a bit confused about the outcome of Wednesday's test but also very thankful for the truth.  That is exactly how we had prayed... that the truth would be revealed through the test and a good solution would be found.  Although it's not what we expected to find we are glad to know this problems exists.  Reflux is still a big part of the equation although it's unclear at this point what needs to be done about it.

We are anxiously patiently waiting for Tuesday's call.

Meanwhile we have stopped the higher calorie formula due to diarrhea problems.  She just isn't tolerating the stuff and isn't able to absorb the nutrients in it.  So for now we are back to the 275 cal/can of Peptamin Jr with fiber.  It's been difficult to get the full 3 cans/day in her.  Lately we've been waiting for her to fall asleep before we give her nightly meds and then increase the rate on her feeding pump also.  She is able to sleep soundly with the Carafate on board and tolerates her feeds much better when she is sleeping.

I got a quick shot while she was being casted for new AFO's (ankle, foot orthosis).  Her feet are growing!

17 months

Precious Levi is growing and changing faster than I can record his cuteness!

He is talking more and has really picked up in his signing too.  He says: Momma, 'Siah, Abby, Dada, apple (apo), stuck, banana (nana), more (mo), door (doe), Papa, no, diaper (di), baby, grapes (gay).

He signs most of the above and also "all done,""up," "hurt," "sick," "bird," "sing" and a few others.  I love hearing his little voice and watch his hands tell me what he wants.

Grapes are his favorite thing in the world!  He asks for grapes every day and cries if we don't have any.  He still likes to throw things. Anything and everything.  Bathrooms have a particularly strong draw for some reason, where he loves to pull all the toilet paper off the rolls and explore the toilet.  *cringe*  Today I found him about to throw a CD in!!   We try to keep the door closed but any opportunity to enter is taken.

He's quite the climber too.  He climbs on the kitchen table, the counters, the train table, the piano, any and all chairs, a stool.  I'm surprised he hasn't attempted our Christmas tree!  He does however love to rip off the low hanging ornaments and chuck them across the room.  Why did we get a tree this year?

It's been fun to watch the boys play together.  Levi has developed a high tolerance for tackling, although there are a few tears shed every day.  Someday he will have his turn to be the tackler!

He weighs about 22 lbs.  Just right for a good squeeze!

Reflux continued

The G-tube trial is officially over and we have reverted back to the GJ-tube.  Abby's reflux has reared it's ugly head again.

For about 4 months she seemed to be doing well with the G-tube feeds.  We were hopeful.  The past 3 months or so we've started seeing the tell tale signs of reflux discomfort... moaning, arching, gulping/swallowing, finger biting, bad breath and sleeplessness.  These are a few of the symptoms we've seen since Abby was tiny.

So back to the GJ-tube we go.

(At the hospital waiting for the procedure- listening to Elmo)

And to a new Gastroenterologist.

Our visit with this new doctor went very well.  He is a caring, personable and extremely knowledgeable guy!   As soon as we shook hands and started talking we knew it was a good fit.  First order of business was a significant increase in one of her reflux meds.   It's called Carafate and it really helps!  He more than tripled her dose, but explained that this is just a band aid for her problem.  It will help keep her more comfortable until we can get to the bottom of her reflux and understand what needs to be done.

He also described two different procedures that might be options for her.  The first is a repeat Nissen Fundoplication.  This is the surgery she had at 9 months old; this would be a re-do.  Potentially this could stop her reflux and allow G-tube feeds again.  He explained that some kids just can't be fed into their stomachs and they need a permanent J-tube.  This procedure is much more complicated and involves rearranging some of her small intestines.

Before we think any more about surgery Abby will have some testing done.  She is scheduled for a Gastric Emptying test on December 15th.  During this test they will put radioactive liquid into her G-tube  and watch what it does.  She will be lying on a table under a special scanner that will take pictures of her GI system.  If she refluxes it will show it.  They will also watch to see how long it takes her stomach to empty.  After this test we'll get to talk with the Gastroenterologist again and discuss the results.  He may order additional tests at this point.

We are so thankful for this new doctor.  Hope and relief for Abby are in sight!  She will struggle with reflux and GI issues for the rest of her life, but if we can help her be more comfortable and continue to receive good nutrition so she can grow and thrive, it will make all the difference in the world.

She has gained 1 lb since the beginning of summer which is good.  At feeding clinic this month she weighed 35.6 lbs!  This is good news, although our dietician wants her to get back on her growth curve.  She is the size of a healthy 4 year old.  I think she looks great!  We will start her on a higher calorie formula soon.  This will give her a boost without having to increase her intake... which is a challenge right now.

Thanks for all who have prayed for our little Abbers!

Thanksgiving Bucket

They come in all shapes and sizes.  Growing up in China my sister and I called ours the "lu tong," or green bucket.  These days we use a blue, round, plastic bucket from a hospital operating room.  It comes in handy when the stomach bug attacks!!

Yes, this Thanksgiving we got the nasty bug. (thus the lack of pictures.  Head over to Lee's blog to see a few) Our wonderful family came down from TN to spend the holiday weekend with us, and the night they arrived I came down with it.  Thanksgiving morning Patrick got his turn, and that afternoon poor Josiah succumbed.   Needless to say it didn't turn out like we had hoped.  As the old saying goes, Life is what happens while you are busy making other plans (John Lennon).  We had plenty of plans all right!!

We still got to enjoy some time with our family, the kids had a blast playing together, we did actually have a Thanksgiving meal and yes, there is plenty to be Thankful for.

We are so very thankful for our parents who love us.  For Grandparents who visit, call and Skype us.  For sisters who care for us even when we are sick.  For friends who call.  For Doctors who listen.  For a hospital close by.  For a heavenly Father who knows all of our needs even before we ask.

Abby is sick now and we are settling in for a potentially long night.  poor little girl.