Our Battle with HSP

Our battle with HSP began in February of 2017.  We took our three children to their dentist appointments.  We noticed our daughter, Cooper (who was 5 at the time), was walking funny.  I asked Coop what was wrong and she said that her feet hurt.  My first thought was her new shoes were too tight.  We had just bought them a couple days prior to the dentist.  I really didn't give it a second thought.  She hobbled herself to the car and took her shoes off.  When we got home, I noticed they were quite swollen.  A side effect of new shoes being too tight, right? My husband suggested we ice them, because they were hurting her quite a bit.  We iced them and laid her in bed (by the time bedtime rolled around we had to carry her to her bed because her feet hurt too bad to walk).  By morning she was good as new.  We got her dressed and ready for school - but with her old shoes on.  I am lucky enough to teach at the same school my kids go to (such a small school that I am actually my son's teacher this year).  At the end of the day I looked out my window to watch my little Coop as she played with her class at recess.  My sweet little kindergartner was hobbling by a picnic table.  How weird, I thought, because she didn't have her new shoes on.  The more I watched, the more my heart sank.  Not only was she hobbling, but she could barely walk.  I asked someone to watch my class, and I ran to her.  I asked her what was wrong, and this time she said her knee hurt.  I picked her up and carried her to our school secretary, who also happens to be our school nurse, psychologist, my personal therapist, etc.  I told her about Coop's symptoms, and together we sat Coop down and pulled up her pant leg to see her knee.  Upon pulling up the pant leg, we were horrified to see purple spots all over her legs.  Chicken Pox? Mumps?  What in the world was wrong with my little girl?  Bawling, I asked my sister if she would watch my other two kids while my husband and I took Coop to the emergency room.  On the way to the emergency room, I looked back at her in the car.  I saw her beautiful little face, filled with worry.  I looked her over.  That's when I noticed her hand.  Her right hand looked like someone had blown a bubble under her skin.  It was grossly swollen.

It was almost as if I was watching it happen.  We drove a little faster.  When we arrived, we were taking very seriously, based on the odd and very present symptoms.  Coop was looked over by a few doctors, all of which were baffled.  They immediately sent us to the hospital for further testing.  They ran a total workup on Coop, took x-rays, did a urinalysis.  All the immediate tests came back good.  Nothing serious we were told.  I have never been so relieved in my life.  She was diagnosed with Scarlet Fever.  A simple antibiotic would help take care of this and she would be better by the weekend.  We happily left, picked up her antibiotic, and headed home.  This was all on Friday night.  Even though her symptoms did not match Scarlet Fever, I was still hopeful that's what it was.  By Sunday, Coop's symptoms had improved.  The spots were almost gone and her swelling had gone down and she could walk.  Then, the doctors from the hospital called and said all her other tests were clear, and they no longer thought it was Scarlet Fever, and we were advised to take her to the Children's Hospital immediately.  Bawling, I once again called on my wonderful sister.  We headed straight for the Children's Hospital.  On the way there, my sister called me and asked if I thought it could be this thing called HSP.  Yes, it did match her symptoms pretty well, but it was so rare, especially for a girl, so I wasn't too sure.  We got right in to the ER at the Children's Hospital.  The doctor probably wasn't in the room for 10 minutes when he looked at my husband and said 'Have you ever heard of Henoch-Schonlein Purpura?'.  I said yes, that actually my sister had found it online.  He said he was 99% sure that's what Cooper was dealing with.  Thank goodness! I thought.  Everything online made it sound as if this disease lasted only about 4 to 6 weeks and that it usually doesn't have any lasting effects.  We were told to give her Motrin for her swelling and to stop the antibiotic.  So, once again, we went home relieved that our little baby would be okay.  
        In a couple days, the swelling returned.  We immediately gave her Motrin, which seemed to immediately cause more spots to appear.  This time they were a little more vicious and were all over her thighs and buttocks.  The swelling was again in her feet and knees. 

 I decided to keep her home from school for a couple days.  I stayed home a couple, and then decided to leave her with our babysitter (I have the world's best babysitter, who my children absolutely adore!).  I was at work when my babysitter called and said that Cooper couldn't move.  Coop had to use the bathroom and my babysitter was trying to pick her up and carry her there, but Coop was in extreme pain.  I immediately left work and flew home.  I asked Coop where it hurt and she said her back.  I pulled up her shirt and it looked as if someone folded up a wash rag and stuffed it under her skin on her spine.  Her SPINE was swollen and she could not move.  I carried her to my car, laid her down, called my husband, and headed for the Children's Hospital.  We were told this is just part of the HSP running it's course.  We were also told not to give her Motrin anymore, because it may induce the bleeding and be causing more spots.  We went home again. 
       In the next couple days, Coop made a great recovery.  So much, in fact, that I let her go back to school.  The next day, I noticed that she had a big swollen spot on her shin, and she was having trouble walking again.  Once again, she stayed home with the babysitter.  I got another call at work.  Cooper's head was now swelling.  Her forehead was protruding.  I flew home again, and flew back to the hospital.  The doctor was very honest with us and said he was not sure if this was related to her HSP or not, so he said they were going to have a team research it.  In the meantime, they ran a slew of tests.  All the tests came back clear.  The doctors came back and said that through their research they had a case of another child with HSP and swelling of the head.  Still not very comforting.  We were once again sent home.  I didn't sleep much that night.  I was worried about what that swelling might cause.  In the morning the swelling had settled down into her eyes.  They were almost swollen shut.  She didn't even look like the same child.  But, after a few days, the swelling had pretty much disappeared.  Coop returned to school.  This surely has to be the worst of it, right?  I wish.

March 14, 2017 will forever be a day I remember.

March 14, 2017
We woke up and were getting ready for school.  Cooper complained that her stomach hurt.  I didn't want to push her to go to school, for fear it may cause a flare up.  I let her stay home that morning with the babysitter.  
9:00 am.  I get a call that Cooper is throwing up.  My babysitter told me that she would take care of it but she wanted me to know (she is pretty great, right!).  I wasn't overly worried because I just thought it was another symptom of her HSP.  It causes stomach issues.  Boy was I ever wrong.  
11:00 am.  I receive another call.  Coop's vomit is now dark.  Possibly blood.  I FLEW HOME.  F-L-E-W.  My babysitter gave me a bucket and I loaded Coop up and put her in my car and we SPED drove to the hospital.  Coop was passing out between vomits and vomiting every 10 minutes.  As soon as we arrived I grabbed Coop, her bucket, and ran into the ER.  I showed them the vomit and held her because she couldn't walk.  They rushed us, along with a mom who was worried about her son's appendix, to separate rooms.  I gave the other mom a hug and we wished each other well as we prayed for our babies.  They ran some tests on Cooper and then sent her for an ultrasound.  They called a doctor in to look.  He looked extremely puzzled while looking at the screen.  He explained that she had what they call intussusception.  Basically, her intestines were going inside each other and pinching themselves.  Oddly enough, I knew all about it because my nephew had suffered from it over the summer.  He was two at the time.  They were able to used forced air to correct the problem.  The doctor explained that this would not be the case with Cooper because her telescoping was located in her small intestine, which could not be reached by air.  What is odd is that she is too old to have this problem.  I told him that I had read it was a rare side effect of HSP.  He said 'OHhhhhhhh.  Okay.  That changes things.  I was not aware this was a child with HSP.  We need to do surgery.  Immediately.'  I immediately called my family, most of who were already there.  We prayed, put her on every prayer list imaginable, and left her in God's hands.  Her surgery took about an hour, up until now, the longest hour of my entire life.  We were called back by a nurse, just my husband and I.  We went into a small room to wait for the doctor.  He walked in with a smile and I cried with relief.  He told us the surgery was successful, but they had to remove 28 cm of her small intestine.  She should never miss it we were told.  We were forever thankful and so ready to see our little girl.  They said only one of us could go to recovery, and my gracious husband allowed me to go.  I sat by her as she slept, so thankful that she had made it through and should make a full recovery.  I thanked the Lord and waited for my beautiful girl to wake up.  Soon, we were moved to the PICU of the Children's Hospital.  Cooper slept most of the day of the 14th.  This is normal we were told.  She needs rest.  My husband and I spent the night and my wonderful sister cared for my other two children.  
March 15, 2017
Coop woke up a seemed to be feeling pretty good.  The Children's Specialist came around and brought us some movies and stuff for Coop to play with when she felt better.  We watched Moana together and all seemed wonderful.  They thought she was ready for her NG tube to be removed (which was horrible to watch and I'm sure worse to experience).  They removed it and allowed her to drink some clear liquids.  Coop was eager to drink and was happy to suck out any water out of a sponge that she could get.  Around 7 pm, Cooper began to moan.  Her stomach was hurting.  Then, around 8:30, she began to vomit.  I ran to the hallway screaming for a doctor.  She can't vomit.  She JUST had surgery on her intestines.  She continued to do this ALL NIGHT LONG.  Every 10 minutes ALL NIGHT LONG.  I laid beside her to catch it with a bag, but soon it was just dry heaves because there was nothing in her little tummy.  I begged the nurse to call the doctor.  This is not okay!  She can't do this.  She doesn't have the strength.  The night nurse told me it was normal and that she probably needs her tube reinserted.  I'll spare you the details, but this was H-O-R-R-I-B-L-E.  The first time it was put in she was already sedated.  This time, she was awake, miserable, and fresh out of surgery.  Thank the Lord my husband was there.  I was yelling at them to stop and I finally had to run out of the room while he stayed to comfort her.  The tube was reinserted, and Coop was still miserable.  
March 16, 2017
When the shift came, the morning nurse immediately got her a patch for nausea and Coop finally got some relief.  Coop started to even perk up a little.  I told my husband to go home and sleep.  Coop was improving and there's nothing he could do here anyway.  He had been up all night with me and he was still trying to work.  After much convincing, he left to get some rest.
While looking at her, I noticed her tube was pulling out what looked like blood.  It was dark.  I was worried about this immediately after surgery, and they told me it would clear up.  This is two days later and it looks darker.  I notified the nurse.  It's normal I was told.  When the doctor came in, I also brought it to his attention.  Normal.  When her specialist team came in I brought it to their attention.  One of these specialists I LOVED.  She listened to everything I said and took me seriously. She said I was right and it did not look normal.  She ordered an X-ray.  She looked concerned and left.  X-Ray came and left.  Cooper actually began playing a game of tic-tac-toe with my father-in-law.  She's better! I thought.  I was wrong.  So very wrong.  The nurse came in and told me that they were going to take her in for a CAT scan, just to make sure everything is okay.  Okay, I thought.  Better safe than sorry.  My sister-in-law went with me to the CAT scan.  We stayed with Coop as she had it done.  She was so brave and did amazing.  We went back to her room and were talking with her, happy that maybe everything is okay.  
     A surgeon walked in.  He asked if he could take a look at her.  I said sure.  He felt Coop's tummy and asked her if it hurt.  She said it didn't.  He said 'really?'.  Then, he asked if he could talk to me in the hallway.  My heart sank.  I followed him to the hallway.  He told me they found an obstruction and would not know how bad it was until they went in.  A second surgery would be needed.  I l..o..s..t my mind.  Totally lost it.  I was going to lose my baby.  How could I live without her?  My sister-in-law called my husband, sister, and mother.  She also decided I needed to take a quick walk to control myself before I entered the room where Coop was waiting for me.  As we were walking I ran into her surgeon.  I needed to know, so I asked 'Can you please tell me the worst case scenario?'  He said 'Do you really want to know?'.  Now, for just a moment, picture yourself in that scenario.  Did I really want to know?  NO!  Did I have to know?  YES.  So I replied that I did.  He said that worst case scenario is that a lot of her intestines have died and she will not eat for months.  My reply:  But she will be here?.  Yes, yes she will be here.  I was relieved beyond belief.  I don't care what we have to do to care for her, as long as she will be here.  Be here for me to hug, love, and watch grow.  Coop is brave, strong willed, beautiful, caring, has a heart for Jesus, and just an all around amazing child.  To lose her would've been unbearable.  So, needless to say, I was okay with this worst case scenario.  I still asked for best case.  Best case scenario:  Her intestines are twisted and need untwisted.  I pulled myself together and headed back to my baby.  Telling her she's going in for a second surgery was heart wrenching.  She was scared and weak.  I told her it would be okay and waited with her until they came for her.  They let me go back with her, but my poor husband did not make it in time to see her (my fault) before she went back for her second surgery.  Even knowing worst case scenario, I was a complete basket case right before the surgery.  Before they took her back I asked a nurse to say a prayer, because I could not pull out a sentence without huge sobs.  I feel sorry for that nurse now!  I could tell she was uncomfortable, but bless her wonderful heart, she prayed for my wonderful little Coop right there.  Then, I had to leave her in God's hands once again.  I walked to the waiting room, where I was greeted by my family.  It was much more tense this time, waiting for the call back.  It was the middle of the night and there wasn't anyone around.  I still thank the Lord for having that specific surgeon on call that night.  He was wonderful.  I got a special call from the nurse in the middle of the surgery telling me the situation: Best case scenario.  Praise the Lord!  I was so happy.  I was told that they untwisted her intestines and were sewing her back up.  It would be another half hour or so before they would be done.  Even with the good news, I was a little worried about my baby having two surgeries in three days.  I couldn't wait to see her.  We were finally called back and told that her surgery was successful and now she should be on the mend.  With it being her second surgery though in such a short amount of time, she would need to be moved to the special part of the PICU where she will be watched 24/7.  For the first time since the 14th, we were finally able to sleep a little.  Coop was comfortable and the nurse was by her side.  I slept by her bed until the nurse told me I could sleep in the bed with Cooper.  Now, in high school I tried hurdles and was terrible at it.  I now believe if someone was in the room at that moment I would get drafted for the Olympics.  I hurdled that bed and snuggled close to my baby.  This is where I would sleep for the next week and a half.  
March 17, 2017
Doctors came in this morning and informed me that they would have to insert a PIC line into Cooper, to make sure she was getting the nutrition she needed. How do you insert a PIC line?  You sedate the patient and thread it through their vein to by their heart.  I cried.  This little 5 year old has been under heavy anesthesia twice already this week.  Is there any way you can do it without sedation?  Not with kids this age I was told.  I cried again.  Then they said if she could lay perfectly still, they would try.  But, they would have their team dressed and ready if they were unable to do it without sedation.  THANK YOU!  Thank you, I said.  I was thrilled they were going to try.  They explained to Coop she would have to lay still.  A nurse brought an IPAD in and put a blanket over her head and Cooper's and read her a Fancy Nancy book on the IPAD.  I was told I would have to leave the room during the procedure.  I left and prayed.  I prayed like crazy.  After awhile the nurse came and got me.  My little warrior sat still better than people three times her age.  The PIC line was in, with no sedation needed.  Thank you, team.  Thank you, Cooper! 
The next few days were a bit of a blur.  I sat by Coop and hung on her every word.  My heart jumped every time she perked up.  On March 20th she got out of bed.  It was the best feeling ever to see her sitting up in a chair.  This was the first day I actually got a glimpse of my old Coop.  

That night, we were laying in her bed and the nurse came in and asked if she wanted anything.  She said 'Food!'.  The nurse said maybe tomorrow.  She then asked me if I wanted anything.  Coop answered for me, saying 'Yeah, a big old jug of beer!'.  The nurse cracked up, and usually I would be mortified, but I was so happy to see her be ornery, that I couldn't help but crack up, too.  Coop's back and she's going to be okay.  We were finally released from the hospital a few days later.  We had a small set back after the first night home and she had to be readmitted for a few days, but it was mostly my fault for letting her eat more than she probably should of.  
     We had to get Coop's urine tested every week for 6 months to check for protein or blood in her urine.  If a test showed blood or urine, we had to go back in for another one.  In October 2017, we began testing only once a month.  So far, her urine has been clear and kidney function has been good.  So far, we haven't had any flare ups of HSP.  This disease is so much more than what you read online.  It can cause some awful things to happen and I've read many stories where it is ferocious and does not leave.  I am very thankful today that Coop is healthy.  We are very blessed.  Her experience taught me a few things:  Never take your child's health for granted.  I have the best friends/family in the world.  Cooper's pediatrician and second surgeon are two of my heros.  Cooper is a warrior.  HSP is a very serious disease.  And lastly, and most importantly, God is good.  

If you are currently beginning your battle with HSP, have faith and stay strong!  Send me a message and we will pray for you or your baby.  If you need more information about this disease, here are a few links that I found helpful. 

https://www.mayoclinic.org/diseases-conditions/henoch-schonlein-purpura/symptoms-causes/syc-20354040

https://www.webmd.com/skin-problems-and-treatments/henoch-schonlein-purpura-causes-symptoms-treatment

https://www.hopkinsvasculitis.org/types-vasculitis/henochschnlein-purpura/

If you happen to be reading this and know the story, I want you to know how much I appreciated all that was done for us while we dealt with this nightmare.  I want you to know the packages you sent with things for Cooper to do during her stay, you visiting to check on her/me, your texts asking how she was doing, your prayers for my sweet baby, you stopping by and crying when you saw her lying in the hospital bed because it broke your heart, you taking my other two children and loving them as your own so I had one less thing to worry about, the $100 I found deposited into their lunch accounts when I returned to school, the cards and money that were given, all of that sits in my heart and warms it constantly.  I will never forget your kindness and love.  You are the best.  You brought light during our storm.  We love you.  Thank you!

(Our littlest one decided to do her own makeup just prior to this picture being taken :))