Blessing in Disguise

I didn't mean to desert this blog but life happened.  I truly haven't been able to process it all yet but I know it needs to get written down.  I will do my best to record everything here.  In my last post I mentioned my daughter, Kayla, had been diagnosed with an eating disorder.  I was terrified but hopeful we could get the right help for her.  As I worked on that her health took a turn for the worse and forced our hand.  Here's the whole story.....

As a refresher, somewhere around the first of April, Kayla became ill.  She was staying in her room a lot, taking a long time in the bathroom, and generally avoiding food.  She went to school one Monday and called me around 8am saying she was going to pass out.  Don went to get her, I called in sick to work and we went straight to the pediatrician.  All signs, including a 20 lb weight loss, pointed to an eating disorder.  After the appropriate freak out, we had blood work done which confirmed she was severely anemic and malnourished.  Her prealbumin was extremely low as well as her iron level and red blood cells.  Prealbumin is a protein that is made in the liver and released in the blood. It helps carry certain hormones that regulate the way the body uses energy and other substances through the blood.  She had almost none.  The pediatrician (not our regular) sent us to a place in Cordova called The Transformation Center.  They specialize in eating disorders and have an intensive out patient therapy program.  We went for our intake appointment and the Dr. who saw us said she didn't think they would be of much help to us since Kayla didn't seem to have body image issues.  I was sent away with a couple of names of therapists as well as nutritionists and spent the next week and a half trying to find the right people to talk to while trying to get Kayla to just eat and drink ANYTHING!!!  It was a complete nightmare.  The earliest we could get a therapy appointment was April 29th.  The nutritionist everyone recommended didn't take insurance and was very costly although we certainty would have figured it out.  I was so frustrated that the one person who seemed in a hurry to get her help was me!  Thank God she ran a fever in the second week (Monday) and we had to go back to see our regular doc (Tues).  She had no other symptoms besides the fever so he assumed it was something viral.  He gently but firmly read her the riot act and said she had to eat or would end up in the hospital on a feeding tube.  The next morning (Wed) she threw up (just once) and was still running fever so I called the dr's office again and they said just keep her on a liquid diet until she felt better. 

By Thursday I was extremely concerned that she was dehydrated.  She was lethargic and didn't want to move.  I couldn't get her to drink anything and she was pale as a sheet.  She had no lips.  I called the dr yet again and they said I should probably take her to the ER at LeBonheur to get checked out.  Meanwhile I was in contact with the nutritionist who had serious concerns about her being medically stable and also was encouraging me to take her to the ER.  She said when we got out of the hospital I should be prepared to admit Kayla into a long term residential facility that specialized in eating disorders.... either in Denver, CO or Chicago, IL (!!!).  Our insurance company on the other hand just wanted to send her to a psychiatrist and get a prescription for antidepressants which made me furious.  My brain was spinning from all of this but I marched on.  I told Kayla we were going to the hospital and as she cried about not wanting to go, her face did the ugly cry thing but only one tiny tear eeeked out.  I told her we could go in my car or I could call an ambulance but she was going.

 As soon as we got to LeBonheur, they saw us immediately.   She had to run to the bathroom and the nurse went along with her to make sure she wasn't trying to throw up.   They took vitals and put us in a triage room.   They started to run an IV bag of fluids and did an EKG (heart rate was crazy high) and bloodwork.   Talked to her about why she didn't want to eat... made her comfy and decided to admit her.  By that night they were talking about giving her a blood transfusion and Friday morning they did just that.  The Hospitalist said there were some things that just didn't match up with an eating disorder and wanted to do a CT of her abdomen to see if we were dealing with a GI issue.  To get a CT you have to drink two huge bottles of horrible icky stuff and her stomach was so small from whole malnutrition thing that just the thought of drinking made her sick.  She tried but only got about half a bottle down.  They ended up having to do a NG tube (tube down the nose to stomach) and that was horrific.  She had a major panic attack and they didn't get it in the first time and had to do it again.  Then the tube had to stay down through the testing and until we got back to the room.   Meanwhile her stomach was a mess and she had to go to the bathroom constantly.   CT scan showed inflammation so they started talking about prepping on Sunday for a colonoscopy/ endoscopy.  We all sort of breathed a sigh of relief at that point, especially when the doctor said - "This is not something you are doing to yourself.  This is something your body is doing to you."

Because Kayla wasn't able to eat real food and at that point was passing blood, they needed to give her a PICC line (a central IV).  Through that they would give her what is called TPN which is IV Nutrition.  They had to give her morphine which was amusing for as long as they let me stay with her which was about a minute.  When they got back to the room, they started a second blood transfusion.  She was losing a lot through her bowels.  Meanwhile her right arm where her regular IV was started to swell so they elevated that and started talking about having to do a new IV.  About 30 minutes into the second transfusion she started to run a fever which can be a sign of a bad reaction so they had to stop the process.  It was an exhausting day but we were in such great hands. 

Sunday was Easter.  Most of the day was quiet but she had to start the "gentle" cleanse to prep for the test on Tuesday.  When your colon is already angry, there is no such thing as gentle.  She already had stomach pain and the cleanse just intensified it.  They gave her Miralax and she had to drink 6 - 5oz cups of it mixed with whatever she wanted and 8 more the next day.  She only got down two that night. It was horrible for us both.  Its so hard to see your child in pain and not be able to do anything about it.   They let her sleep and we talked to the GI Dr. about it the next AM.  He told her that he would only make her do 6 more and two pills.  The pills were easy.  The drinks however once again caused anxiety.  She had two glasses to go and just couldn't do it.  We ended up having to give her Ativan to calm her down and once that kicked in the nurse got her to swallow the rest.  I could have used an Ativan at that point too.  She also had blood transfusion #3 that night.  She will most likely never drink Sprite or Gatorade again.  Ever. 

When she woke up the next morning she thought she still had to finish drinking and was so relieved to find out it was over.   They did the scope around 11 that morning and they had to put her completely out for it.  Poor kid had to keep going to the restroom before the procedure which meant a wheelchair ride down the hall because she was too weak to walk and hooked up to IV's.  BUT, this is where the story gets better.... sort of.

The scope took about an hour and when the dr. showed me the scans it was obvious what was causing the bleeding and the pain.  She has Inflammatory Bowel Disease, not to be confused with IBS.  It is incurable but manageable.  It manifests as either Crohns or Ulcerative Colitis and in her case its more than likely UC (very severe case).  If you really wanna know more you can go to ccfa.org.  But in short, she will have to be on medication for the rest of her life and there will be times when it will "flare" and those times may land her in the hospital again with worst case scenario having her colon surgically removed.  Its an autoimmune disease and no two cases are alike so you just have to learn how to cope and manage it.   They started her on IV steroids and Sulfasalazine which is a miracle drug.  It completely stopped her stomach pain and calmed down the bathroom urgency within 24 hours.  She was still passing blood but at least now we knew why. 

After the test she could eat whatever she wanted which was wonderful after the last five days on liquids. They ran out of veins in her arms to draw blood from (once the PICC line went in they couldn't use the left arm at all and the right arm was just shot) so they had to draw from her foot. Her heart rate was still running high and that bothered me but I figured they were watching it so I tried not to worry.  The first thing she asked when she woke up from the scan was "are they sure it's not cancer?" Poor kid! I had no idea she was worried about that!!

The next day (Wed) she woke up to swelling in her left arm where the PICC line was.  We had to get an ultrasound done and unfortunately they found a rather large blood clot.  The PICC line was removed (which meant the end of IV Nutrition ... she was 95lbs when we got to LeBonheur and might have been up to 100 at that point) but they couldn't start blood thinner right away because she had a disease that caused her to bleed and for the last 24 hours they had been trying to STOP the bleeding.  Giving a blood thinner would be counterproductive.   They had to call in a hematologist from St. Jude and they decided to give a Heparin drip via IV for 24 hours and see what happened.  If her bleeding got worse, they could stop the heparin immediately and take other measures.  Thankfully it worked but because there was still significant blood in her stool, they did another 24 hours on the drip and did another ultrasound to check things out on Friday.  The clot runs from the middle of her upper arm to her jugular vein.  Since there was no adverse reaction to the Heparin, they started her on Lovenox shots in her stomach twice a day.  She has learned how to give them to herself and will have to continue them for three months with regular checkups at the Hematology Clinic at St. Jude.  (As of this post the three months will be up next Wednesday!  Hoping the ultrasound shows the clot is dissolved.)

Little by little the bleeding stopped over the next few days.  They switched her to oral steroids and after she responded well them for 24 hours, they finally let us go home on Day 14.   We made so many new friends there and it was bittersweet leaving but we were so happy to just go home and sleep in our own beds!!  

Kayla was still weak and still needed to gain weight but her coloring was back and she felt like trying to finish out the school year so after a week at home, she went back and took her final exams.  Would you believe the kid ACED most of them (we won't talk about Geometry... but she passed the class which is all that matters)!?  The summer so far has been filled with a lot of rest, lots of Dr. appts, and almost 20 lbs in weight gain (Thank you Prednisone!)! 

 I want to clarify what the Hospitalist told us... Kayla WAS anorexic.  Anorexia is a term used when you lose your appetite no matter what the reason.  She did not however have Anorexia Nervosa which is the eating disorder.  It was strange to be glad about an incurable autoimmune disease but it truly was the better diagnosis.   I am absolutely appalled by how difficult it was to find help for an eating disorder in this city.  Those were terrifying weeks and I had no idea how to help my daughter as I watched her wither away.  My heart goes out to anyone who has ever dealt with such a difficult and debilitating diagnosis.  It makes me look at weight in a whole new light.  I'm just as guilty as anyone about thinking someone is too fat or too thin, including myself.  The next time you think about jokingly saying "you need to eat a cheeseburger" or making a comment about one too many cookies, remember there are all sorts of reasons people weigh what they do.  Eating disorders (whether it be too much or too little), cancer, steroids, thyroid medication, depression, Inflammatory Bowel Disease... these things are very real and many uncontrollable.  Lets start looking at each other's hearts instead of our waist sizes.  Be kind always.