Journal 6: The Road to Healing

February, 2019

She has been in school for a few weeks now and I fully anticipated her arriving home droopy and exhausted but even her first day back was a pleasant surprise when she arrived home and was full of information about her first day of school.

Last Friday we went for her 4th infusion of medication and we had a chance to meet with the doctor as well.  The doctor smiled and told us my daughter’s labs looked so good.  She gave permission for her to return to all activities as normal and stated that she wants my daughter to be active.  Hallelujah!!!

We are in Lacrosse season again and my daughter has been so eager to return to help manage the Lacrosse team.  I’m going to only allow about 3 days per week with the team for now and then transition to every day if her body can handle it.

She has gained weight and is about 128 pounds!  Doctor said that this is so amazing considering her swelling has subsided while coming off steroids, so she has been losing fluid and still gaining weight in the process.  I’ve also noticed some shorter hairs sticking up indicating her hair is coming back again.  Doctor told us that when your body is struggling, your hair stops growing and it sort of lies dormant.  My daughter has lost about half her hair because of all the steroids she has taken for seven months, but now it’s coming back.  It’s a HUGE relief to be getting some good news, but of course we still feel cautious.

So in the past 2 months since beginning the infusions that we were a bit afraid of I feel like I’m regaining my sanity.  With my daughter in school, I’m not having to schedule appointments with her home-bound teacher and worrying about what trouble she might be getting into while home alone.  I’ve also experienced the roller coaster of what steroids can do to us emotionally!  WOW!  I always knew I hated being on steroids but my daughter tolerated them beautifully except for when she came off them.  For about three weeks I felt like I was living with a monster!  She went from crying over almost nothing to displaying passive aggressive behaviors like stealing and lying.  I learned from her doctor that when someone has been on steroids for a very long time, especially children and teens, they can display challenging emotions and behaviors for a good three weeks to a month after their last dose.   This was a challenge and I found myself crying to our pastoral staff about how I didn’t even know what to do with this child!  Thankfully this subsided and Easter Seals Mentors helped us survive this season because my daughter does well when supervised but gets in trouble when alone.

I’m headed to Phoenix right now, in the air, on my way to the Women’s Speaker’s Collective with my oldest daughter to help her gain confidence in her speaking skills and to better mine too.  It feels nice to be able to do something good with one of my other children and not to be surviving in what felt like a constant crisis mode for all of 2018.

I know many families that have much more difficult situations than we do.  I wondered if telling our struggles from 2018 might help someone else know they’re not alone and all families have struggles.  It’s hard to keep your sanity while walking a road of suffering.  However, I’ve also learned that suffering has an important place in my journey of faith.  Suffering draws me closer to God and for that I am grateful.  I’m also appreciative of the staff and church I serve.  They have been a great encouragement to me and I owe them my presence and prayers in their times of suffering as well.

I know at any time my daughter can flare up again.  We are cautious and thankful for today and we are pressing on!

This is Journal 6 in a six part series.

 

Journal 5: Hospitalization for UC and Erythema Nodosum

My daughter has been pumped full of steroids, antibiotics and UC meds for the past 4 days.  Her Erythema Nodosum is so painful we are applying cold compresses.  We are managing her pain with Tylenol and it seems to be helping.  MRE showed her kidneys flared up as well as a small part of her pancreas.  Doctor says this could mean she had pancreatitis recently but it’s not a concern now.  We just got back from having a sonogram on her kidneys because they thought she has a UTI, but her urine didn’t grow any cultures overnight and they say this is mysterious.  So we aren’t sure what’s happening with that until we get results.  I’m concerned about her left eye that flared up week before last that went away with an eyedrop the Urgent care doctor prescribed on Oct. 22.  PCP says there’s an ocular issue that some people develop that’s in conjunction with UC.  We have an appointment in Dec. to get that looked at.

We have cabin fever and are ready to escape from this box we have been living in for the past 5 days.

Fast Forward to January 2019:  Oral meds for UC just aren’t cutting it.  We’ve been through many medications.  She’s flaring up again…  Back on steroids we go again…  Now we have a decision to make:  ALL liquid diet without wavering at all for 3-4 months, or we start medication infusions.  80% of those who try the liquid diet go into remission!  Many people cannot tolerate the taste of the prescribed liquid solution so they have a feeding tube placed in their nose.  Nothing is allowed other than water and this liquid solution.  I’m not even sure I could handle that much less my daughter who is on the autism spectrum and one of her worst struggles is her strong impulsivity that comes from her ADHD.  Infusion medication side effects have the word “fatal” as a side effect should you get a virus or something else while your immune system is down.  Difficult choice!

After much discussion, reading and agonizing, we settled on at least trying the liquid diet.  Then I got a call from the dietitian who apologized for even telling us about the liquid diet because after a more careful look at my daughter’s records they indicated she probably would be in that 20% that wouldn’t respond to the liquid diet and would need infusions anyhow.

After experiencing 2 infusions now I can see my daughter’s energy level strengthening!  She almost seems like a normal hyper silly teen now.  Tomorrow is her last day of taking a steroid, and that will be the telltale sign of how she is doing when the steroids leave her body and if inflammation returns.  She is even cleared to return to school on Feb. 1 if her body is responding to the infusions.  We should know by the weekend if we have a problem again and she needs more steroids.  I also know steroids can have terrible effects on the body if they are taken for too long.   She has been on steroids since August 2018.  She has also been home bound from school since October.  We are ready to be normal again!

My daughter’s illness and having to be home bound have presented other unexpected behavior issues that have been very difficult to deal with.   Because of my daughter’s mental disabilities we qualify for a mentor through Easter Seals.  This has been such a blessing for me to know that someone is watching over her and managing her at home while I work.  It’s hard for a kid to stay home alone all day.  Idle times bring trouble!  Beforehand I was assigning her a daily chore as well as her school assignments for the day.  This clearly wasn’t enough to occupy her mind.

A mentor from Easter Seals stays with her for 5 hours per day while I work and her brother is home at 1:30 pm daily and he helps supervise her some in the afternoons.  Other times I bring her to my office and isolate her in a room so she isn’t exposed to a sick person.

Scheduling all these health appointments, managing so many medications, micromanaging her hygiene, special diet, behaviors etc… has brought me a season of exhaustion.

The ringing in of the New Year felt so fresh to our family as we just have to believe that 2019 cannot possibly be worse than 2018!

This is Journal 5 of a six part series.

Journal 3: My Daughter Has an Eating Disorder, or Does She?  How I Addressed Assault and Other Abuse

Well, now we see!   This has been an exhausting week of travel and emotional strain.  I called the hospital like I do each night hoping to speak with my daughter and the nurse who answered the phone said, “Um, she’s being taken to the ER.  Sorry we haven’t had time to call you yet.”   They said they were very concerned about my daughter’s hemoglobin level from her lab work was so low she needed to be addressed at a higher level of care.  They also discovered blood in her stool.  That night I talked to ER doctors who were perplexed about her condition but administering IV fluids and nutrition quickly.  They did a few routine tests that revealed my daughter needed a colonoscopy and endoscopy.  My husband and I arrived the next day because we were so far away.

Endoscopy revealed my daughter has a healthy pink esophagus; however the pictures we saw of her large intestine and colon were shocking to see: inflammation, puss and bumpy masses all over.  No doubt about it, she has Severe Ulcerative Colitis (UC).  We learned this is a hereditary condition that has no cure.  You just pray and work hard for the UC to go into remission.  Many people live full good lives with UC when it goes into remission.  Others have to have surgery to remove parts that are badly damaged or the entire thing to get well.  We do not know exactly what the future holds for my daughter.

She is slowly gaining weight by eating double portions and working hard in therapy to help her issues with attachment and anxiety.  We visited her last weekend and noticed a pink color coming back in her face.  It’s hard to be away from her but we also know that bringing her home could be fatal if things go in the wrong direction and we do not catch it.  We feel at peace that she is in the best place for now being monitored so closely medically.

However, there is a downside to where she is: the other patients.  One afternoon she called me crying hysterically.  Another girl hit her.  She was so upset I couldn’t’ even make out what the full story was exactly.  I did learn after asking questions that she wasn’t bleeding and there weren’t any marks left on her body.  I think this incident was more harmful to her heart than it was her body.  Later I was able to speak with a staff member who described the “hit” as a slap and it happened twice.  The first time the girl slapped my daughter from behind and my daughter didn’t even know who had slapped her.  They called all the residents of the unit together and questioned the girls until one girl stood up and said, “I’m the one who hit her and I’ll do it again!”  She then slapped my daughter a second time!

The hospital took measures to isolate the girl who slapped my daughter.  They moved my daughter to another unit because she told them she didn’t feel safe.  I called the police station closest to my daughter’s location.   They conducted interviews with both girls and documented the event as a “simple assault.”  What a stressful evening!  I mostly wanted my daughter to know that it’s NEVER ok for someone to slap/hit/assault her and that I will always be her advocate!

I’m bothered by minors experiencing crimes like assault and sexual abuse that never get reported.   When this happens I believe these kids tell themselves they do not matter, nobody cares and that they’re not important.   They become victims and believe they are nobody.  YES, some crimes have the potential to make it on the front page of the paper and I know nobody wants their family stuff in the paper, but to neglect reporting and documenting can really bite you later on in the long run.

I’ve walked with other foster kids through criminal court proceedings where they had to face their offender head on in court.  This is the toughest thing they might ever do in life and it’s terrifying but I’ve also learned this has the opposite effect on a child that not reporting or not pursuing has!  Facing the offender in court teaches your child you’re not afraid and that what happened to them is NOT OK.  It also builds their self-esteem and helps them understand that you’re there to support them through thick and thin and that you as their parent will do the right thing for them, tough or not!  This is why I called police.  I also called police because I’m so far away from her and I didn’t see the details.  I cannot see her face and know exactly what happened.

Journal 1: My Daughter Has an Eating Disorder, The Nightmare We Lived in 2018

My daughter has an eating disorder, the kind that convinces you that you’re nothing and you shrivel up into a frail bony shadow.  We first noticed this when she came home one day from managing the high school Lacrosse team.  She was clearly dehydrated and looked terrible with bags underneath her eyes.  She told me she didn’t eat or drink all day long.  Ironic because she was in charge of feeding and hydrating all the players on the team!  Weak and exhausted we fed and hydrated her and put her to bed.  She wasn’t back to normal until 2 days later.  That was in February.

By March we knew something was wrong so we talked with a counselor at the high school who recommended we see her doctor.  He put her on a depression med.  We saw an upswing in her eating and mood for about 3 weeks and things started to spiral downward once again.  He also referred her to a G.I. doctor but the appointment we received was for September so we just had to wait it out.  This is a constant struggle with Medicaid, long waiting lists to see a specialist.  From there I started my research online and making phone calls to see what the next step would be when got there.

Next step was to visit an eating disorder clinic in a well-known University for an assessment, but, bad news…  You have to wait 2-3 months to get an appointment!  We survived and encouraged our daughter to eat and drink.  Assessment day finally arrived.  We answered many questions and left emotionally tired and were told we’d hear something within a week.

We were then referred to an intensive outpatient clinic about 30 minutes away from our home.  She would see a therapist, dietitian and eating disorder physician all together.   This took about 3 hours each time we went.  We were told to MAKE her eat.  We choose her food and make her eat it.  We also had to supervise her in the bathroom for 45 minutes after her meals.  We had to write down everything she ate and keep a detailed log of her nutrition.

She is trying.  Her anxiety is so large that she vomits at the table half way through a meal.  She cries and says she is trying to eat and get better and now her body won’t allow her to do so.  We keep meeting with the clinic weekly.  No physical progress is being made because her body won’t digest food.  It’s gone without for months.  Constant diarrhea and vomiting that seems to come from anxiety.

In July I press the clinic to take the next step.  Everything I’m reading says the earlier you intervene the better off the patient is long term in life.  They make the referral and now my daughter is hospitalized.  She has been there a week.  The intake process was emotionally exhausting for 3 hours.  Days later, crying phone calls begging me to come and get her.  I had to explain coming to get her means she DIES.  The lining of her heart is already damaged and thinned from malnutrition.

BAD NEWS…  Her insurance won’t cover her for any residential facility here in NC.  We have to take her all the way to a hospital near Richmond, VA.  Cumberland Hospital for Children.  I HATE MEDICAID!  This child has been through so much in her life and now she has to go so far away!  I could write a book about how Medicaid creates difficulties for my foster and adopted teens.  They go through enough and having to navigate the system takes a lot of time and stress to get my kids what they need.

This is Journal 1, the first part of a series of 6 entries that will be posted daily for 1 week.

Journal 2: My Daughter Has an Eating Disorder, The Nightmare Continues…

A few days after my daughter was admitted to the hospital in VA, 5-6 ours from home, we got a call from the team that is caring for her.  I was so pleased at the steps they were taking and the goals they had set for her.  They say my daughter is working hard and I’m so proud of her for recognizing she has a problem and that she is trying.  I’m very impressed with the therapist who is recognizing things immediately.  I believe she is trying her best to help my daughter heal.  My stress level deflated after that call.  I’m impressed with what they’re doing.

The therapist called me and started talking about “disorganized attachment.”   She explained this to me some and recommended I do some reading on it.  Yes, I believe this fits my daughter.  She is adopted and her biological mother had many struggles with domestic violence, substance abuse and bad choices like leaving her kids for weeks at a time to go visit a boyfriend far away.  This has left a mark on my daughter.  Episodes of trauma while the brain is developing affects us far more than if we’re an adult.  Can she work through all of this and get better?  I hope and pray so!

One of the myths people coming into foster care believe is that if you just love these kids they’ll heal and be ok.  I’ve learned love isn’t enough many times.  I love all my adopted children dearly.  They need so much more!  Even though I love my daughter tremendously and have given her a structured safe home her scars still remain.  She lives in constant fear that I will leave her because her mother left her many times.  She projects this onto me, which makes sense, but I’m also learning eating disorders don’t make sense at all!   One thing I learned going to the clinic is that this doesn’t make sense and trying to make sense of something that isn’t rational is irrational in and of itself!

So I get questions like, “What do you think triggered this?”  “What is she upset about?”  “Did something happen at school?”  These are all rational questions that I don’t have an answer for and sitting around speculating all of this can drive one mad.

So now I’m trying my best to love my daughter, pray for her, call her every day, visit her as much as I can even though she is 5-6 hours away.  I believe she wants help and healing and is reaching out for it.  This is what gives me the greatest hope!

The most terrifying element of all of this is my daughter lives in a “unit” that is full of other teen girls all who struggle with difficulties in their lives.  They all have medical and emotional issues.   Some are very angry and look really scary.  Others are delightful but I can tell they are a handful.  So I have to take the good with the bad and keep pressing on to get her the help she needs.  She is being strong and I’m proud of her!

Right now they are keeping her away from the eating disorder group because many of the patients in that group have had their disorder for years.  My daughter started this 7 months ago.   They do not want my child to learn some of the behaviors these other patients display.  So right now she is being encouraged to improve her eating on her own and she is working on her trauma with her therapist.  I appreciate them being cautious.  While we might be postponing the inevitable, we just don’t know yet.  We shall see.

This Journal entry is the second of a six part series.

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