Facing Fears

NG is No Good

This afternoon Haley had a chance to face her biggest fear in life and overcome it. First, some background:

 Many of you know that Haley has been sick since she was about 9 years old. When she first got sick, it was with severe abdominal pain. (We now know that this is how EDS starts in many cases.) At the time, we brought her to the pediatric gastroenterologist at the nearest university medical center. After doing a workup, it was decided that she needed surgery. (The need for it was later questioned by other doctors). In order to clean her out before surgery, she was told that she had to drink a one gallon jug of bowel prep. She was also told that if she did not drink it, the nurse would have to put a tube down her nose into her stomach. She tried, but vomited the prep, so we were enlisted to help in the task. I was to get in her bed, she was to lie in my lap, and Larry was told to lay his entire body over her little legs. We followed instructions and then the nurse shoved the tube (called an NG tube) down her nose and into her stomach. It was very traumatic, to say the least. This, plus many other invasive, scary procedures resulted in Haley being diagnosed by a child psychologist with post traumatic stress disorder, or PTSD.

Ever since that time, Haley has said that she would rather die than to ever have and NG tube again. It was the thing she feared more than any other thing.

Back to the present: She has been dealing with a lot of pain (postop) and nausea for the past several days. This got worse on Saturday, and Sunday morning she began to vomit. You can imagine how difficult this was for her to do in a hard collar and with pain in the incisions in the back of her head and her left back rib area, (from the first surgery) and in her abdomen, flank and side from the second surgery. She vomited off and on all day. The gave her medicine for it and for pain, but she kept on vomiting. Eventually Dr. Henderson came in and said those most-feared words--"We need to place an NG tube." You can imagine her response. Her response was also NG- not good. She explained to him that this was her worst fear and that she would rather die than to have another NG tube.  He listened, but explained the need for one.  He said that she was in a cycle of pain meds causing her digestion to slow, which caused the bile that her body produced to stay in the stomach, which caused nausea, which caused vomiting, which increased her pain from straining, which caused the need for more pain meds...and so on.

And so, brave Haley, the heroine, agreed. Dr. H was kind and made little jokes to help her relax, but it was 100% Haley facing her greatest fear. Here is a picture of her with her NG tube. (She's asleep so I didn't ask if I could post this. Let's hope she thinks this one makes her look Bad A, too.)

 

 

After an hour or so, Dr. Henderson said that the nurse could take it out. It did the trick. No more vomiting!

 He also said that he wanted her up walking in the hall. This was her first time using her new walker. She was able to go down the hall and back, but it was really hard for her. This was the longest she had ever walked since her surgery (or since May 22 for that matter) and it took its toll on her. She, once again, showed her bravery and perseverance. Her is a picture of her in the hall with her nurse Harolda.

 

This was a tough day that started our gloomy and dark, just like the weather her at DCH and ended with the sunshine streaming in. Our hopes were lifted and it may be that she will be discharged from the hospital on Tuesday! We will wait and see. My goal was that she would be able to declare her independence before Independence Day. Please pray that it would be so. Thanks, friends.