IN FRONT OF THE RED SEA

The difficult experience at the hospital this week, with the goal of getting nutrition into Jenna and helping her gain weight, has kind of ended at an impasse.  I won´t bore you with details of things that happened and what went wrong and why this week became a disaster (you can read that under The Latest).  I will just say this:  this week the only two options for giving Jenna additional nutritional support other than by mouth (which so far she has been unable to do), were ruled out. It was a very hard hit...

After getting the NG tube out (which Jen found physically unbearable, psychologically demoralizing & which only worked 50% of the time we´ve been here), we were anxious to talk to the Drs about another option called a J-tube, a feeding tube directly into the small intestine through the abdominal wall with a button-like outer port for hooking up additional nutrition.  This option would allow her to receive additional calories at night while she sleeps.  A number of people have asked us if this had been presented to us as an option.  But Jenna is not a candidate for this because of the recent radical surgery and the hot localized chemo wash that they did inside her.  There are a number of potential complications that made them give us a definitive NO to that idea.  We were really disappointed.

In the afternoon at one point I told Jen I felt like the Israelite army stuck between Pharaoh´s army and the Red Sea.  We can´t go back and we can´t go forward.  We are completely dependent on God to come through with a miracle for her. There is just no other way...

We cried together and asked important, difficult questions like:  how can things be going worse when so many people are praying?  What does that mean?  Is there a ¨greater glory¨ He´s holding out for that we can´t see?  What difference are the prayers really making?  What would happen if no one prayed?  And other, even more agonizing questions:  Why does God not seem to be helping her?  Why is she just getting worse?  Why has He not seemed to go before us this week in the hospital - we just seemed to drift from problem to crisis to issues to miscommunication to any number of dysfunctional hospital operations.  Every day was exhausting.  Every day we were fighting a system, I was having to advocate way out of my comfort zone and we are both exhausted.  It would be worth it if we had some answers but we don´t!  Plus she weighs the same as she did Monday when we started here!  (At least she has not lost weight.)

So today as it stands, Jenna´s nutrition must happen by mouth.  For this, we need a miracle.  For this we need issues resolved, like why is her vomiting increasingly worse and she has not held anything down at all for 3 days?  How can I possibly take her home like this?  We first need to know why she can´t keep things down never mind, if her body is assimilating them!  It´s so frustrating to think it all depends on us again...then again, this means there is plenty of room for God to show up!!

Yesterday they had her do a barium test to watch how food travels through her system.  They could definitely see reflux right where she complains about pain when she eats -  the barium went down, then up again.  But it took 5 hours to go all the way through her system!  All afternoon in radiology...

Waiting for the barium to go down...

Jenna´s insides on the screen...cool, huh?

The yummy barium she had to drink (took her an hour to drink it!)

It´s basically like liquid pink chalk!

Waiting, waiting, waiting...

Today they told us that the good news from the results of this test is that the esophagus is clear and it appears that it needs no repair.  But her intestines are reeeaaaallllyyy  slooooow (probably due to the localized chemo during surgery) and so we are trying a medicine this weekend to see if it helps with that.  They also recommended trying a carbonated drink (normally not recommended) to see if that would help.  So we are trying that to see how it goes.

So far, we have tried the medicine with no success.  The first time she got it down but then the food came up.  At dinner, she threw up the medicine before trying to eat anything!  So much for that!  But they insist we continue to try it to see if some kind of build-up in the system will bring any change.

We pray for change...we pray for miracles...

Since they took out the NG tube they put her IV nutrition.  However, in peripheral veins on the arms it is hard work for them to accept the heavy nutrition.  She developed phlebitis  in both arms already and we are already on a 3rd IV in her arm.  These swollen, red veins are sore and she developed a low grade fever as well.  We may have to go to a main artery.

The Drs are very focused on calories - however she can get them!  They insist anything she eats be accompanied by olive oil (100 calories in 1 soup spoonful).  Plus, prepared protein drinks, sipped very slowly (these are very nasty but whatever).  So far, we haven´t found one that sets well with her but will keep trying.  This is her new best friend (& 2nd best friend):

 Would you keep praying with us for resolution on these complex issues and for us to find things that stay down and put weight on her?  We want her to get stronger, be healthier, have more energy - for there is still much ahead of us.

THANK YOU.  We are indebted to all of you who keep us on your minds and share our burden!

Photos by:  deekrebs33, bsburnsie,  Jeanne Menjoulet & Cie