Mystery Lane

Mystery Lane

Monday, December 26, 2011

Ambulance Ride, Fever, Pink Eye, Rash and Lack of Sleep Oh My!

It’s been a while since I’ve posted on the blog so thought I better catch everyone up on why.  Jackson’s constipation problems seem like nothing compared to what we have been through this month. 

The first week of December we headed to Seattle Children’s Hospital.  Jackson had an appointment to see an eye doctor and to have an ERG (electroretinography – a test used to detect retina damage).  These tests are required by the manufacturer of his seizure medication since the medicine can cause permanent peripheral vision loss.  The morning of his appointment with the eye doctor, he woke up with pink eye.  He’s never had any problems with his eyes so it was kind of surprising, but good timing.  The eye doctor prescribed the antibiotic right away and within a few hours of waking up with the pink eye we were treating it.  Luckily the pink eye did not interfere with the ERG.  The next day we were back at Seattle Children’s for a 7:30 a.m. anesthesia appointment.  Jackson had to be put under for the ERG.  The procedure was fast and for the first time Jackson woke up quickly from the anesthesia.  We were on the highway headed back home to Spokane by 10:30 a.m.  We were pretty happy about getting home so early and having a little time to unpack and get ready for work and school the next day.  But Jackson’s body had other plans for us.

We were about 30 miles outside of Spokane on Interstate 90 when Jackson made a weird sound.  Kevin and I turned back to look at him in his car seat.  I don’t really know how to explain what Jackson was doing.  It was just weird.  He looked weird, he sounded weird, and it was apparent something was very wrong.  We soon realized Jackson was having a seizure, but it was unlike any seizure he has ever had.  By the time we pulled over and got him out of his carseat, Jackson was in pretty bad shape.  He had lost consciousness and he was blue.  I called 911 while Kevin held him in the backseat.  Those few minutes I was on the phone felt like forever.  I thought Jackson was dead.  When the 911 operator asked me if he was breathing, I didn’t know.  I didn’t want to ask Kevin because I was afraid he would say no.  Thinking Jackson was gone was the worst moments of my life.  I thought of throwing myself in front of one of the semi’s screaming by on the freeway.  I can’t imagine not having my Jackson in this world.  It’s too much to bear.  When I did finally ask Kevin and he said he was breathing, I don’t think I have ever felt such relief.  By that point I was desperate to see the ambulance come.  A State Trooper had arrived but I just wanted to get Jackson in the ambulance and get to Sacred Heart in Spokane.  Considering we were out in the middle of nowhere the ambulance arrival after 10 minutes was awesome.  Before I knew it we were in the ER in Spokane.  Jackson had a 102 degree fever by that point, was extremely aggravated and screaming.  After a ridiculous 7 attempts to get an IV line on Jackson (I was seriously about to punch a nurse) they finally got Jackson on some much needed fluids and some pain relief.  Jackson was out like a light shortly after that and we were admitted to the hospital.  A blood sample showed that he had a viral infection.  The neurologist felt that the seizure was a febrile (fever) seizure and that his seizures weren’t coming back.  (He hasn’t had a seizure since.)  Jackson’s fever broke that night about 2 a.m., followed by a short period of throwing up, and a wide awake Jackson throughout the night.  They took a urine and nose swab sample to determine what kind of virus he had.  The next day we were able to go home about noon.  By 3 p.m. we were at the pediatrician’s office because the fever came back.  The nurse prescribed some antibiotics for an ear infection he had (his first one) and suggested we do the Tylenol/Ibuprofen every 3 hours for a couple of days routine to control the fever.  We were back on our way home.  He did pretty good over the next 2 days so I slowly stopped the Tylenol/Ibuprofen routine on Sunday.  I thought he was getting better.  But Jackson’s body had more in store for us.

Monday around 5 p.m. he woke up from his nap with a high fever.  The kid was burning up.  I instantly started the Tylenol/Ibuprofen routine again.  This fever was bad.  It didn’t respond to the medicines and my poor baby was shaking with the fever.  All I could do was hold him and try to soothe him.  He was so miserable and he kept looking at me with the saddest eyes.  I hated feeling so helpless.  This was the beginning of 6 days of high, uncontrolled fever.  6 days of being up most of the night holding my little boy in his bed while he shook and fought the fever.  6 days of feeling helpless and worrying so much about my little boy that I felt sick to my stomach all those days.  The only good part was when Jackson would finally fall asleep in my arms and get some relief.  I actually loved holding him in my arms while he slept.  It was so peaceful and I was so thankful to have him in my arms, safe and sound, after that horrible seizure. But it was the most wearing 6 days of my life.  Wednesday I took Jackson to the pediatrician and he was diagnosed with ulcers on his tonsils.  This was more than likely the cause of the uncontrolled fever.  All we could do was wait it out.  The doctor did give us Tylenol with hydrocodone to relieve some of the pain and help him sleep.  Unfortunately for us, hydrocodone seems to have the opposite effect on Jackson, it kept him awake rather than helped him sleep.  The fever broke on Saturday and he seemed to be doing pretty good that day.  The next day he woke up with a horrible rash all over his body.  We headed to the Urgent Care where after waiting almost 3 hours the doctor informed us that the rash was a perfectly normal part of this virus.  Typically the day after the fever breaks the rash arrives for a couple of days.  It lasted about 4 days and slowly disappeared.  Over the next few days Jackson slowly got a little better.  He began sleeping like a bear in hibernation.  15 hours at night, a 4-5 hour nap during the day.  His body was finally getting the rest he needed.  The rash went away and his laughter returned.

In the midst of all of this we were scheduled to leave for our annual Florida Christmas vacation.  Needless to say we rescheduled our plane tickets.  Jackson was in no condition to fly.  We left 4 days later than originally scheduled but we made it to Florida.  It was the right decision to make as Jackson needed those extra days to get better.  Of course as we were stuck in the Denver airport on a layover to Florida we noticed the pink eye returned, this time in both eyes.  Thankfully I had packed the antibiotic eye drops so we were on it quick!  We are in Florida now and I am happy to say that Jackson is returning to normal.  His sleep pattern was off the first 3 nights we were here.  He was up till 3 a.m. each night, happy and as playful as can be.  But his pink eyes are better, there hasn’t been a fever, and he doesn’t seem as congested as he has been.  Maybe the Florida sunshine really is magic!  All I know is that we are very lucky that Jackson is typically a very healthy little boy.  I know some of the children that share his brain malformation have a great deal of medical issues and are sick frequently.  Those parents are truly amazing.  My little boy was sick for a couple of weeks and I nearly had a breakdown (well I did have one, a mini one).  I hope we are on our way to healthier days and happy laughter from Jackson. 

Through all of this Jackson gave me a couple of gifts.  The kind of gifts little boys give their Mama’s who secretly wish they hadn’t got them.  Pink eye and ulcers on my tonsils.  Thank you Jackson.  Mama loves YOU so much.  But your gifts, not so much!


  1. Hello, my name is Allison and live in Vancouver, BC. I would really like to talk to you as it seems that both of our sons are so similar. My son is only 14 months old but seems to be going through so many similar things. He too was diagnosed with Unilateral Perisylvian (sp?) Polymicrogyria affecting the right side of his brain and very small part of the left side. I just found your blog and have been engrossed for a few hours. It has been amazing for me to read and to know that there is someone out there who is going through so much of what I am. There aren't many resources out there for other similar parents to connect. Let me know if you would like to chat and I'll send you my email. Cheers! Allison p.s. Jackson is adorable!

  2. Hi Allison! Of course I would love to communicate! It helps so much to know there are others out there on a similar journey. We are in Spokane, WA so aren't too terribly far from you. Anyway here is my email address: Feel free to email anytime and I will look forward to communicating with you! Give your little guy a hug for me!