I would say for the two days following surgery, Ashtyn has felt lousy.  She is given Morphine and Oxycodone to help with her abdominal pain.  She  spends her day in bed moving as little as possible.  Of course it is the most painful when she has to walk.  Every three hours she gets out of bed and painfully walks slowly down the hall, wearing a thick mask, using her IV pole as a walker.  Once back in bed she quietly rests or sleeps with very little emotion.  She’s worn out.

Not only does Ashtyn not have energy, she also doesn’t have an appetite.  She has struggled with eating enough calories for over a month.  It was finally apparent that it would be in her best interest to get a nasogastric tube.  An NG tube is placed into her nose, down her throat and esophagus, and into her stomach.  With liquid food and a pump, Ashtyn can be given 100% of the nutrients needed to build her body up for the stresses that are before her.  If she feels like eating, she can.  If she doesn’t feel up to eating, she doesn’t have to.  The food given through the tube can be increased or decreased, compensating for whatever she chooses to eat.  From now on she won’t have to stress about forcing herself to eat.  The bad part was, she had to get the tube placed.  That was one procedure she has always feared.  After some discussions and pep talk, the time had come to get it done.  She was given some medicine for anxiety but still laid in bed with fear.  I climbed in bed with her.  “Ashtyn, you can do this.  Ten seconds of bravery, that’s it.  You can do anything for ten seconds.”  The nurse then placed the tube in her nose and tried to advance it down the throat.  It didn’t take 10 seconds, it took a lot longer.  The tube wouldn’t advance down.  Another nurse was brought in to try.  With tears running down her face, she allowed the nurse to put the tube in her nose.  He quickly advanced it down her throat as he directed her to swallow.  She was brave and cooperative.  Her gag response kicked in.  Once the tube was in the stomach she threw up several times on her gown and all over the nurse’s hands and arms.  The nurse didn’t even flinch having his hands bathed in her throw up.  He washed his hands and announced that they were now “throw up friends.”  The nurses that care for Ashtyn are truly phenomenal people.  So caring.  So loving.  The NG tube will take a while for Ashtyn to get used to.  She doesn’t like how she can feel it move inside her nose and throat.  However she knows she will get used to it and it is a great comfort to both of us knowing that she’ll receive all her needed calories.

Prior to the unexpected gallbladder surgery, this week’s schedule was full of outpatient hospital visits to prepare for the upcoming bone marrow transplant.  We decided to get what we could done while in the hospital so Ashtyn wouldn’t have to do as many day trips to the hospital when she is home.  She had an echocardiogram (cardiac echo)  and an electrocardiogram (EKG) to make sure the heart is functioning properly for the transplant.  She also got a CT scan of her chest, abdomen, and pelvis to rule out any abnormalities.  The CT scan required her to have about three cups of contrast (a special dye to help highlight the areas of the body being examined) in her stomach.  Three cups doesn’t sound like very much liquid, but for Ashtyn who hadn’t had anything in her stomach for six days, it was a lot to ask.  Luckily she already had her NG tube secured.  The nurse started to infuse the contrast into Ashtyn’s stomach at a rate of about one cup an hour.  A little over an hour later, when Ashtyn got up to use the restroom, nausea poured over her.  We did all we could to help calm her stomach so she wouldn’t throw up.  The rate at which the contrast was infusing was dropped.  The nurse gave her medicine to help with nausea.  Ashtyn and I laid in her bed without moving as I prayed and she concentrated, mind over matter.  Three hours later it was time for the CT scan.  She was wheeled downstairs, laid on the CT scanner bed, and quietly got through the procedure.

By 8:30 p.m. Ashtyn was back in bed with a promise that she could rest the remainder of the night.  It was a tough day.  Again Ashtyn amazed me with her bravery and endurance.  She knows there is no point in whining or complaining.  She must and is moving forward.