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!

23 Days!

I can't believe it has been 23 days since my last post.  Where did the days go?  Well, I know where they went.  There will be a post about those 23 days coming soon.  But in the meantime, I came across a website that I wanted to share will all my fellow special needs parents.  Courtesy of flappiness.com, here are 11 Things I've Learned Since Becoming a Special Needs Parent.  (Although, I do have to say, I think some of these apply to ALL parents!)

1.  Not knowing is a lot harder than knowing.   Yes, there is a lot we can do via therapy to help our children walk, talk, learn, etc.  But the hardest thing to admit is that most of it is simply up to their brain and its wiring.  There are no certain predictors that a special needs child will develop speech, be able to read, be potty-trained, or become self-sufficient .  Good signs, yes.  But nothing is certain.  The not knowing can drive you crazy if you let it.

2.  The internet is a blessing and a curse.  On one hand, there is valuable information out there.  Yet, information overload can get you stuck.  You end up reading too many awful things — that often don’t apply to your child at all — and it can deplete your hope and make you paranoid.

3.  Connecting to the special-needs community (whether it be acquaintances, support groups, or the internet) can be both a lifesaver and bummer.  It is vital to find people who know what you are going through.  Yet, sometimes it can produce even more negative feelings.  Since there is always someone who has it worse than you, it can make you feel guilty for complaining.  And, since there is always someone else who has it much better, you can sometimes forget that, when it comes to parenting, stress and worry are relative.  Those people are just as immersed in their concern over their children as you are and, understandably, aren’t grateful simply because it could be worse.  It can always be worse.

4.  Holidays  and special events magnify the situation.  Birthday parties are no longer joyful events.  Your special needs child is in an unfamiliar setting, one with all kinds of new dangers.  You actually have to observe typical children alongside your child, so his delays and social difficulties are painfully obvious.  People naturally want to know what to buy your child.  And you might not know.  He might not play with toys.  And you will have to endure the present opening and cake cutting that your child is tuning out in front of everyone present.  No matter what is said and done, there is an air of sadness.  Ditto for Christmas.

5.  Well-intentioned people will silence you and add to your frustration.  They don’t mean to, but it is human nature to comfort and soothe.  Invariably, they will attempt to do so in awful ways.  Some will deny there is a problem and say that everything will be just fine.  By denying there is even a problem, they effectively silence you and leave you isolated in your own mind.  Some will try to remind you how grateful you should feel.  And, while gratitude is a great thing, being reminded that you aren’t just makes you feel worse.

6.  Picking your battles will take on a whole new meaning.  A lot of folks will look at you like you are crazy for “giving in” to a 24/7 diet consisting of nothing but chicken nuggets and crackers.  Even more will judge you for “giving in” to what they view as tantrums and being spoiled.  You, however, know that therapy, joint attention activities, and getting to school are the real non-negotiables.

7.  People will surprise you.  Casual acquaintances will step up to be better friends than the friends you most believed you could count on.  There is nothing like becoming a special needs parent to give one clarity.

8.  Doctors and other experts really don’t know everything.  Your pediatrician and other persons doing behavioral screening may not see what you are so worried about and may try to convince you nothing is wrong.  They may encourage you to wait and see.  You will want to believe them and may forget that childhood development really isn’t their specialty.

9.  If you aren’t a naturally assertive person, you will have to become one.   People ranging from loved ones to Early Steps to the school system will give you a lot of reasons why they can’t meet your child’s needs.  Even if it goes against your nature, you will have to fight for him.  You will have to insist — which is both harder and easier than you might expect.

10.  It’s easy to neglect others when you are caught up with the needs of one child.  You can forget the importance of date night with your spouse.  You might forget a friend or loved one’s birthday.  You might realize that your typically developing children aren’t getting enough attention from you.  And you might realize you are not taking care of yourself and are about to fall apart.  You will have to figure out a way to stay both connected and together.  This is hardest thing to learn and do of all.

11.  You will develop an appreciation for the little things.  There are moments of interaction and progress that will steal your breath.  Hugs and kisses are unbelievably precious.  And you will understand why this little soul was given to you. It’s because you are a perfect match for one another.  And that is what sustains you through everything else.

Back to the ER

For those of you reading my blog you know that Jackson has had some constipation issues which has led to two ER visits.  Well the third time is a charm!  We went back to the ER last week when Jackson was again screaming in pain.  I had stopped giving him the laxative, per doctor’s orders, and the second day of no laxative he began screaming again.  Jackson had also had a low grade fever for about 4 days accompanied by a runny, green discharge nose.  What I thought would be a quick in and out at the ER turned into a hospital stay.  The doctor from our second visit was working and since she had seen him before she wanted to be thorough this time.  Another x-ray of his belly showed us that he was still full of poop, although not as bad as before.  After listening to his chest they then did a chest x-ray to see if he had pneumonia.  Luckily that came back negative.  Then came a urine sample with a catheter (it made me cry imagining how much that hurt my baby, especially after the nurse said it make grown men cry).  Next up was another enema.  They did this one a little different and it didn’t turn into a funniest home video.  I was happy about that for Jackson’s sake, but since my husband was there this time I was kind of hoping to watch him deal with the exploding poop fest.  No such luck, dangit.  After all that, the doctor decided to do a CT scan of his abdomen.  By this point it was about 11 p.m. and we are in the ER with two toddlers.  We decided it was time to take Vivionna home to bed which meant only one of us got to stay with Jackson.  Kevin stayed, I went home.  Kevin is good with the medical stuff and since they were going to have to sedate Jackson for the CT scan we decided he would handle it better than I would.  I didn’t like going home.  I went to bed and cried because I wasn’t with my little boy at the hospital.  I didn’t get much sleep that night and when Kevin called at 4 a.m. to say the CT scan was done and they were admitting Jackson to the hospital I couldn’t wait to get back.  Jackson spent the next day in the hospital while they monitored his poops and fever and awaited the test results.  They did find a kidney stone during the CT scan but other than that everything looked fine.  His urine test results didn’t show any infections so that was good too.  His fever persisted for about another day but was then gone, as was the runny nose.  Basically he is still full of poop and will be on the laxative for a while.  The plan is to give him the laxative twice a day until he starts pooping too much.  At which point we stop the laxative for a couple of days until he is regular, then resume the laxative once a day.  He is also on a high fiber diet.  As for the kidney stone we just have to increase his fluids and hope the thing passes relatively painlessly.  It is pretty small but I’m sure it isn’t going to be fun for Jackson.  We have an appointment with an urologist next month to discuss Jackson’s testicles that haven’t dropped, which became another concern to the doctors at the hospital.  All in all Jackson came away pretty unscathed from the hospital visit.  I have to admit it was kind of sweet to spend the day cuddling in bed with my baby and watching cartoons.  We were fortunate enough to find a babysitter for Vivionna so Kevin could come home and sleep too. 

The doctors all agreed that because Jackson isn’t mobile and lies around a lot that that is a strong cause of his digestive issues.  If things don’t change these problems will persist for him.  Kevin and I are now buckling down and making Jackson work more.  We were just used to carrying him around and doing things for him.  No more.  Now whenever we get him out of his highchair or his bed we put his feet on the floor and make him “walk”.  It of course kills my back (the kid is big!), but it is worth it.  Jackson needs to start being upright and moving more if he is going to get better.  We are currently looking at standers for him.  If we can get him putting more pressure on his legs and have him looking at the world upright, hopefully that will motivate him to walk.  He does have a walker that we use a couple of times a day, but we need something more at this point.  We are on a yet another mission for our boy, but as Ghandi once said “What barrier is there that love cannot break?”  And damn I love my kid!