Clara's fight

We just took another wild ride on the roller coaster of Parenthood.  We've always called Luke our "special child" because there have been far more times when he needed "special attention".  Clara has always been our "easy" child.  She's a happy little girl who surpasses our expectation on most everything.  She's always been healthy, rarely getting sick, and has developed as a normal little girl should. However, she led us on this crazy ride.

We took our family camping with some dear friends near Duchene, UT on Starvation reservoir as an end of summer vacation.  We were having a great time until our last night camping in our laughable tent.  Clara woke up in the middle of the night screaming.  At first, I was seriously annoyed.  Our tents were just feet apart, and I did not want her waking up everyone around us.  We tried to ask her what was wrong, nearly scolding her to be quiet and go back to sleep.  After an hour or so of no change I decided to bail from the tent and take her to the car to sleep off the rest of the night.  I was hoping to get her to go back to sleep, but her screaming did not fail.  I realized this was a different kind of scream, but I was still annoyed at the situation she had now put us in.  Trying to sleep in the car in the middle of the night was not working well.  Finally after hours of more screaming Clara pathetically said it was her ear that hurt.  I gave her some ibuprofen and we slept maybe about an hour.  We were planning on going home later that same day, but we wanted to get in a little more time of fun on the lake.  Clara just wanted to snuggle, but thankfully she was no longer screaming.  I called ahead to our pediatrician's office thinking she just had a bad ear infection and made an appointment for later that afternoon.  It was after a few hours sitting on the beach that Clara was now crying that her neck hurt.

After the admission that Clara's neck hurt, my radar went up.  I wasn't too concerned about an ear infection, but why would her neck be hurting so bad?  The only thing that instantly came to my mind was meningitis.  I recalled a story from a friend whose cousin lost her 2 year old baby in a matter of hours to meningitis.  Panic started to set in, and we quickly loaded up all our camping gear to get a move on it.  Clara was deteriorating quickly.  As we drove the two hour drive home, I was searching for anything I could find on meningitis in children.  Clara was in and out of sleep, but my mind was racing.  Finally we made it home to empty some of our camping stuff, and head to the pediatrician's office.  In our experience with Luke, and the weird sicknesses he's encountered, we started worrying about the lake we were just playing in or that she was sick due to something correlated with camping out doors.  After a quick examination from the pediatrician, he started to look concerned and pointed out that her neck was quite swollen under her left ear.  He was sending us to the hospital straight away, but couldn't decide what tests to order.  We were on our way to being admitted.

We arrived at the hospital, and the first matter of business was to secure an IV.  There was going to be a regiment of antibiotics, but which ones would be determined by the testing.  The pediatrician at that time decided against a CT scan, and just an ultrasound on her neck.  Later, we would question whether that original ultrasound was helpful or not.  Putting an IV in any child is not fun.  They took us into their prep room, and tried to distract her.  I wish they would have had someone to distract me.  They wanted me to hold her the entire time and be with her, it calms down the children to have their mother with them.  I asked them to numb her hand first, because in my experience IV's are very painful.  Apparently for pediatrics, they don't numb for IV's because they would be two pokes.  It took 3 nurses to hold her still, but they got in the IV, and her screams I will never forget.  It immediately brought tears to my eyes, and she just snuggled into me as she whimpered the rest of the night.  The next order of business was her ultrasound.  The ultrasound wasn't as difficult and showed some very swollen lymph nods and nothing else.  The worry was that an abscess had formed in her lymph nods, and the ultrasound didn't show any abscess.  Looking back, this is where we wonder if a CT scan was actually necessary.

So they sent us back to her hospital room to begin her antibiotics.  They were very hopefully that within 24 hours her antibiotics would kick in and we would see dramatic improvement.  The doctor's were trying to give us percentages of kids that do significantly better after 24 hours.  It was something like 80% of kids go home 24 hours later.  That night, Clara only worsened.  Her neck swelled up three times larger, her fever spiked, and her throat was so swollen she was now hanging her tongue out of her mouth.  After the first 24 hours had passed, Clara had gotten worse not better.  The doctors were concerned, and decided to hold the course of antibiotics for a second 24 hours to see if there was any change.   We were now falling into the more rare possibilities. 

By our third day in the hospital, Clara seemed to make mild improvement, but to the doctors that was monumental.  They had done blood cultures and blood work to see if they could determine what the bacteria was, but all their tests showed them was that her body was fighting fervently.  By the night on the third day, Clara took another dive into BAD, responding horribly to the antibiotics.  Her fever spiked once again, and a course change was decided.  They switched her antibiotics, which after 24 hours made no more improvement.  Her blood tests were plaguing, as the team of doctors on her case said it simply made no sense.  So they concocted a new plan.  On our fourth day at the hospital, they determined time would tell.  She obviously had a bacterial infection that was very resistant to antibiotics.  So they sent us home our fourth day and said she would either pass or fail on her current antibiotic.  They were hoping she simply needed more time and another 24 hours at home would tell.  They gave us only a 10% chance that we would need to come back.  They felt confident she just needed more time on antibiotics to show improvement.

So we went home late in the evening after 4 long days of many unanswered questions from the doctors and hospital.  The next morning, Clara seemed to perk up a bit.  We were slightly hopeful.  Until I had a moment of clarity.  I was holding Clara, and I looked at her as she was smiling at me, and I had this awful feeling come over me that she was simply not ok.  If you asked me which parent is the paranoid parent I would not hesitate in telling you its Gilbert.  So this feeling was unusual for me to have.  I had this feeling of doom the rest of the day, even though Clara was seemingly on the mend.  The next day we were to go back to the hospital at noon to check her blood counts.  That night I hardly slept because I could not shake this awful feeling.  As we went back to the hospital, I knew we were going to be readmitted.  My baby needed more attention.

After meeting with the pediatric infectious disease specialist, her blood tests still showed no positive results.  The pediatric ID doctor decided to order a CT scan to see if there was something else they were missing.  He told us to prepare for being readmitted.  Doing a CT scan on a three year old usually requires sedation.  Clara had had some fruit snacks, a few hours prior so we decided to try a CT scan without sedation.  This was quite the process.  As I held her hand during the scan, the large machine spun around her and she was so brave.  She had to hold completely still for almost 10 minutes, and she was awesome!  As soon as the scan was over, the residing pediatrician said the scan showed a large abscess.  An abscess would require surgery to drain, and they were consulting with an ENT surgeon now.  It was about 5 pm in the evening and we were taken to a new hospital room to be readmitted.  As we waited for hours for information, they decided to take her into surgery that night.  At the time I was frustrated because Clara hadn't eaten much that day, and was now hungry.  They wouldn't let her eat or drink anything until the figured out what time she would go into surgery.  Poor Clara had to wait to eat.  That is really hard for a three year old to understand.

While we waited for surgery, I was grateful for my feeling of dread I had felt the day prior.  It helped me to remain calm and hopeful that this was the answer we needed.  The abscess was deep in her neck tissue close to her spinal cord.  She had very limited neck movement because of it.  I just wanted my little girl back.  Shortly after 11pm they took Clara into surgery.  They say its best for mama's to stay with their children right up until surgery.  So I walked her into the holding room for surgery and laid her down on the table.  Then I stayed with her until it was time.  That is an awful feeling to lay your baby out on a table to be cut into.  As I waited in the surgery waiting room, I was frustrated for the rush of surgery and the late hour.  The doctor had explained that sometimes these abscesses can rupture and since it was in such a vicarious place in her neck the bacteria could quickly spread to her heart or brain, which would then turn life threatening.  I simply had to wait to hear that her surgery was successful.   After 90 minutes of waiting, they brought me back my baby, and the surgery was successful.

The next day was difficult, probably the most difficult day of this entire experience.  Because this bacteria she had plaguing her body was extremely resistant to antibiotics, it was recommended we install a pic line for a 21 day antibiotic treatment.  I was not prepared for that.  A pic line goes straight to her heart, and they would have to put her under again to install that.  Her diet was restricted to clear liquids, from the surgery, and now she would be restricted to nothing for them to install the pic line.  We had several specialists come and talk to us about the process.  We had lots of questions, and we were reassured that they were all very good at their job and this would be an easy process for them.  I had to hold Clara all day as she complained about how hungry she was.  This was a hard afternoon.  The thought of them putting in an IV to go straight to her heart just broke my heart.  Not only had she just endured a surgery, but now I wasn't allowed to let her eat or drink.  When they took her to place her pic line, I was hopeful the end of our journey was nearing.  The pic line was taking longer than they anticipated.  When they finally brought Clara back to us, they explained that they had quite a difficulty putting in her pic line and had to do it twice.  This broke my heart further.  Clara had been poked and prodded way too much in the last couple of days.  An x-ray showed that the pic line was 4 cm too deep.  Meaning it was into her heart cavity, and it would have to be done again.  This is when I started to lose it.  They were going to take my baby away again to put her under and fix another mistake.  She was tired and hungry, and I couldn't handle this much longer.  After another try, and more anesthesia the finally got the pic line in place.  I was rude to the nurses.  I did not say kind things.  They were proclaiming how great they were, but they messed up on my baby.  The doctors tried to restrict her diet, but at this point I didn't care what they said.  My little girl wanted dinner, and she was going to get dinner.  She hadn't eaten for almost 2 days and had just been through a traumatic experience.  So we ordered pizza, just what Clara was requesting.

The next day was another hard day.  Clara had many ups and downs, but things were looking down.  She was sleeping all day and not acting like herself.  They were warning us about the possibility of the abscess reforming and needing to be drained again.  We had been fighting this fight for 8 days now, and we were tired.  By late that evening, we were finally able to go home, with her pic line, and home health care on their way to help us administer her IV antibiotics for the next 21 days.  We got home late enough in the evening to order take out to celebrate our 11th anniversary.   What an anniversary!  One we will never forget.

Home health care nurses came, and were at our house until 12:30 am.  Exhaustion was setting in, and the realization of 4 doses of antibiotics a day for the next 21 days started to set in.  If this is what it took to get my baby better, than that's what we would do.  So today is day 1 of 21 days.  This experience has taught us many things, but mostly it has made us better parents.  We have asked ourselves WHY, a lot during this process.  Luke put us through a lot, but we never expected Clara to go through something like this.  Why do both of our kids have to go through these experiences?  It's simply not fair.  We will be more grateful for our kids, and grateful for the miracle of antibiotics.  Our kids are worth everything we have to go through for them.  Today we will be thankful for them and everything we have learned. We're holding our breath that the abscess won't collect anymore.  They say it's only a 10% chance, but betting on Clara right now isn't working out very well.  She's fallen into the "rare" category too many times lately.  This just means our children are very special!