Croup....with a twist.

I sing this to Jackson all the time: Ain't no party like a Jackson party, cuz a Jackson party don't stop!  He thinks it's hysterical, but it's oh, so true.

Friday night, as I'm putting the boys to bed, Jackson kept saying, "Does your say hurt?"  Say = mouth, cuz you say stuff with it.  He's so darn literal.  I looked at him and he seemed fine.  At 1 am, I heard "the cough," by 1:30 we were bundled up in the car heading to The Chateau.

We check in, they take us back and begin the questions.  It's frustrating sometimes because med students are looking for something a little more exciting than croup.  I know it's the ER, I know they have to cover their bases, but I've been through with Jackson more times than I can count.  I told her it's croup, he needs a racemic epi and decadron. This particular student was convinced Jackson was choking on something.  She even brought in another person to hold him down, so she could dig around with a tongue depressor.  When a foreign body was not found, she left without a word and a nurse appeared with a racemic epi and decadron, aka the "Mr. Steamy."

The nurse was wonderful and this was the first Mr. Steamy that didn't cause Jackson to cry, scream, thrash or burst blood vessels in his face.  He calmly sat and played with the iPad and let Mr. Steamy do his job.  I think Jackson finally, finally understands that the breathing treatment makes him feel better.

Here comes the twist:  ready?  We are now in the 3 hour holding pattern that comes after a breathing treatment, waiting for the rebound that leads to hospital admission.  As we're sitting there, I'm watching a show about JFK and Jackson's playing with the iPad, I'm absentmindedly petting J's head.  I feel a huge squishy spot.  He doesn't react, so I didn't think it was hurting him.  I continue poking around and realize the spot is pretty big and I remembered he had fallen a week before.  I slowly start to panic, I'm overtired and my head is going to the worst case scenarios.

The doctor comes in to check on J's breathing and I ask him to feel the squishy spot.  He says, "Well, that's not right, I think I feel a ridge, we have to scan him."  I ask what that means and he explained that a ridge could be a skull fracture and the squishy spot is probably a hematoma, but if any of the membrane is coming through the ridge, he will need surgery.  I'm now in official panic mode.  Go in with croup, come out with a skull fracture.  (Where's that med student now, huh?)

We attempt to do the CT scan which sends an overtired, hopped up on meds 9 year-old into uber panic mode.  ER doc tells us since the rebound hasn't happened, we can go home and call ped on Monday to get an order to do the CT scan under sedation.  We couldn't sedate him at this time because of the breathing issue. So, now I get to worry two whole days before I can call the ped.

I call the ped's office, she's off this week, so they give me to another ped.  They send an order over to the hospital, but they can't get us in until Wed, two more days of worry for me.   The doctor calls me Monday and basically talks me down.  She was fantastic.  She didn't think there was a fracture because Jackson wasn't having any odd symptoms.  She also didn't want to sedate him because she was worried about any adverse reactions he may have.

Wednesday morning, we get to radiology and walk into the room where the CT scan is and Jackson starts to panic.  They ended up having to put a collar on him, velcro him to the table and velcro his head down. Looks like fun, huh?  I haven't heard him scream like this before.

The three girls that helped us were really fantastic, they kept him calm (as best they could), told him everything they were going to do, and were great with Jameson.  Luckily, even with all the screaming and attempts to bust out of the velcro, they got a good enough picture to send to the radiologist and the ped.

The ped called a few hours later and said that she didn't see any evidence of a fracture.  Whew!!  There is still a large hematoma between his scalp and skull that will take several weeks to go away.  She also said that when the blood starts to clot in there, it will get hard and that if we feel lumps, that's normal.

Alls well that ends well, right?  Like I said, "Ain't no party like a Jackson party, cuz a Jackson party don't stop!"

Object du Jour:  Lego sunroofs and the iPad.

P.S.  Then this happened. Who needs turkey when you have a big ball of green playdoh?

The Liftmaster and Doc Brown

So, here's pictures from the Fall Dance at school.  Jackson was a Liftmaster garage door opener and Jameson was Doc Brown from Back to the Future (note the pocket of plutonium!)

I had no idea how to make a Liftmaster costume, but it got Jackson's seal of approval and that's all that matters!  We went trick or treating last Saturday, and instead of saying, "Trick or treat", Jackson would say, "Liftmaster garage door opener."  I think he was really hoping someone would drop one in his bucket.

I'm procrastinating prepping for a talk I have this afternoon to OT students about what it's like to be a parent of a child with special needs.  I was reading through my materials and I usually show the class a poster from the Human Genome Project that lists conditions linked to specific chromosomes.  I was reading through the 4, and the heart condition Jackson was diagnosed with this summer is linked to the 4th chromosome.  Why does that blow my mind?  I don't know, but it does for some reason.

School has been going well for both fellas so far.  Jackson loves school and misses it on the weekends.  He's doing advanced spelling tests because he's so darn good at it.  Maybe he could be a professional speller one day.  I'm really proud of him.

The last pic is our new family member, Dixie, who joined us in April.  Our last cat, Tigerlily, passed away earlier in the year at almost 15 years of age.  We adopted Dixie from MADAAC, which is Milwaukee's animal control.  They guessed her to be around a year old and she couldn't be sweeter.  The boys love her and she's really patient with them.  I got the naming rights and I named her Dixie after Daryl Dixon from my favorite show, The Walking Dead.  Explaining to Jackson what happened to Lily was very difficult.  All he knew was one day she was here and the next she was gone.  He still asks for her occasionally.

Object du Jour:  Lego sunroofs.  He sleeps with them on his thumbs and if they fall off, he wakes me up to find them.

First day of school!

Today was the first day of Kindergarten for Jameson and 3rd grade for Jackson.  J was a bit nervous and cried a little.  Jameson marched right in there without issue.

We did decide to take Jackson out of school a bit early because the Milwaukee Brewers have a Community Foundation that raises money for different groups throughout the city.  They raise a lot of money through their 50/50 raffles at the stadium.  They held a press conference today to celebration raising 5 million dollars!  The conference was held at the Miracle Field where Jackson has played ball for the last three years.  After the talking part, which Jackson was not so thrilled with, the players played a quick game with the kids.  We got to meet, take pics with and get autographs from catcher Jonathan Lucroy (l), pitcher Marco Estrada (r) and pitcher Brandon Kintzler (c). That's J in the red glasses next to Brandon Kintzler.  Such a fun day!

So, we have J's first full day of school tomorrow!  Jameson said he liked school and had a lot of fun today.  He was very excited to be able to eat hot lunch at school.  We've been practicing his pin pad number for weeks, so he could get his lunch today.

Object du Jour:  The iPad.

No archery on the playground!

So, the boys go to summer school.  Jameson is taking an Intro to Kindergarten class and Jackson is just taking the same thing he does every summer, just to keep him from losing skills.

Jackson loves to walk along the side of the building reading all the signs along the side of the school.  "No archery on the playground."  Really?  It's that much of a problem they need a sign?  Anyway, Jackson gets to the door that Jameson goes in and tries to skittle in with the rest of the potential 5Kers and the teacher says to Jackson, "Don't worry, you'll be in Kindergarten soon enough!"  Um, he'll be 9 in a week and in third grade in the fall.   I just see Jackson as Jackson and sometimes forget how the rest of the world sees him.  Most of the kids in Jameson's class are taller than Jackson.

Jackson's new aversion...baths.  He used to love playing in the bath and it was a challenge to get him out.  Now he screams and hits his head saying, "Don't want your hair wet."  Baths are now a quick dunking to get the dirt off and that's it, and even that is a battle.   I'm also not allowed out of his sight.  He follows me from room to room saying, "Mommy, sit on your butt."  In order for him to be content, I have to be on the couch or in the computer chair or he screams and cries and hits his head.  This makes it very challenging to get anything done.  That appointment with psych can't come soon enough.  I just don't know how to handle all of this.  I hate seeing him so worked up, but I can't spend the summer on the couch.

Off to go get them at summer school.

Object du Jour:  A Lego sun roof.  J found a picture of a Lego sun roof while he was Googling Legos and became obsessed.  I ordered some from ebay.  He's been carrying it around and sleeping with it since they day I gave it to him.  Thankfully, there were several in the lot I ordered, so when he eventually loses this one,  (and he will) I have backup.

Jackson's Heart

Met with the cardiologist.  He was very nice and very comforting.  He wanted a repeat EKG, just to check things out again.  Jackson wasn't so happy about that part, but he let the tech do what she needed to do.

Then the doctor came in and explained what "prolonged QT interval" is and what it does.  It is usually caused by medication or genetics. He asked a lot of questions about how people in our families died and wanted to know if there were any unexplained deaths at younger ages.  I couldn't think of any on either side.  He explained that this disorder causes sudden death and will often be dismissed as something else, like if there's a car accident caused by the heart issue, it may just be blamed on the accident.  Nope, not scary at all.

Dr. G explained that Jackson does have prolonged QT interval, but feels it's a borderline case.  He feels that because there's no family history of it, that this may just be how J's heart beats.  He doesn't want to follow him regularly, but wants us to come back if Jackson ever faints or has a seizure.  I'm relieved, but still have a bit of worry.

Here's my teeny little boy covered in "square stickers."

Object du Jour:  Shapes and the iPad.

PS We got the bill for J's tooth extraction...6,100.00.  Thank God for insurance.

The Pancake

Alrighty.  So, Jackson's been a busy little bee the last few months.  He's been to Disney World, finished second grade, started summer school, had a sleep study and been checked out by gi, ortho and physical medicine.

Disney went way better than I could have hoped.  I was really concerned that it would be way too much stimulation for him.  He was leery at first, but DW has this nifty little thing called a Guest Assistance Pass.  This isn't a go to the front of the line pass, it allows the holder and family to use Fast Pass lines on rides that have them.  With the pass, we waited 10-15 minutes for a ride, rather than 2-2 1/2 hours in the regular line.  We took Jackson on most of the rides he was tall enough for.  For most of them he just sat with his fingers in his ears with very little reaction.  He loved the Toy Story ride at Hollywood Studios!  He was also super fascinated with the characters.  The character breakfast was wonderful.  The characters sat with Jackson and let him touch them as much as he wanted.  The pic above is J checking out Jake's hair. Jameson is now totally obsessed with Tower of Terror (we now own the movie with Steve Guttenburg, yes, there's a movie, go look it up!)  He wants to build a hotel in our front yard and fund it with a lemonade stand by charging 11.00 a cup.

This school year was awesome for J.  He's reading and spelling more than ever.  It's really incredible.  We now have arguments in spelling.  LOL  Unfortunately, he will have yet another special ed teacher next year. His fourth in four years.  I'm really not happy about this, but what can I do?  At least his wonderful aides will be the same.

GI and I came to a decision.  We aren't going to work toward advancing J's eating skills.  We both feel that he's plateaued in that area.  We will just continue with the tube feedings and allow him to eat whatever he will take.  Still mainly dry, crunchy things with an occasional Sunbutter sandwich or piece of toast thrown in.  I'm strangely at peace with this decision.  It just got so tiring fighting with him over every bite.

Jackson's PT was concerned about his hips and hamstrings being tight.  We made an appointment with ortho who did an x-ray on his hips and found that structurally everything is good.  The tech put a little rubber circle she called a "pancake" over his privates to protect them from the x-ray.  He promptly started yelling, "It's a penis pancake!"  I'm just waiting until he busts that one out while waiting in line at Target.  Ortho sent us to physical medicine to get the hamstrings looked at.  This doc felt that we need to do some stretching and then come back in 2 months and see how things look.  At that time, he will make the decision on whether or not J will need botox injections to loosen up the hamstrings.  Time will tell.

J's super fun new skill is hitting himself in the head.  He's been doing it for the last 3 months or so.  It's when he happy, mad, frustrated, excited, etc.  He will hit himself with toys or shapes and I can't get him to stop.  He's now progressed to banging his head on the wall or floor.  I consulted the GI beh psych, who recommended we see another pysch at the hospital for help.  That appointment is coming up in a few weeks and it can't come soon enough.  He often will let out blood curdling screams when frustrated while he hits/bangs.  This goes over really well in Michael's when everyone turns around to stare at you and your child and then glare accusingly like you've been beating him.  Or so I've heard.  He started doing it regularly at school too, the last few weeks before summer break.  They tried putting the aide's bike helmet on him and it helped a bit.  I didn't want to have him in a bike helmet all the time, so I put a Brewers cap on him.  He's now been wearing it for almost 2 months straight and even sleeps with it on.  He wakes me up in the middle of the night if it's fallen off. Fun.

The last, and most fun, thing J did was a sleep study to see what's going on with him.  He takes up to 2 hours to fall asleep, wakes several times a night and is up some mornings by 4.  Yay.  They had us bring him at by 7 at night, wired him up and then monitored him the whole night while he was sleeping.  He was not the least bit happy with all the tape and glue and wires.  The results showed he got a good 5 hours of sleep with one hour spent awake just lying in bed.  They didn't see any sleep issues or apnea, so the general thought is that the sleep issues are behavioral.  Yay again.  They said they will work with us to resolve this.

The sleep study did find two things.  One, he's a heavy mouth breather.  This we already knew. He has a small lower jaw and smaller airway, so he's been doing this forever.  They suggested we take him to ENT, which we already have, so we will just monitor him.  Two, the EKG run during the sleep study showed a heart condition called "prolonged QT interval".  This I was not expecting.  They sent us to the heart center to have a full blown EKG done to see what that showed.  More of the same.  So, we now have our first appointment with cardiology on Friday.  I consulted Dr. Google, which never seems to work in my favor, so I'm just going to wait and see what the doctor says.  Scary, but we will take it as it comes.

Object du Jour:  The iPad, which he dropped on cement over the weekend and cracked the screen.  It still works, thank goodness.

Well, it's been 6 months!

Slacker, slacker, slacker!  I promise I will write a nice long post later today.  J has been a busy bee since the beginning of the year!

Buh-bye evil tooth.

Poor Jackson had his oral surgery last Friday. A molar was sideways and blocking the two teeth behind it.  When we got to the hospital at 6 am,  he didn't know exactly was coming,  but he knew it wasn't good.  He cried while we were in preop and kept asking to go home in Daddy's car.   The nurse was wonderful and attempted to calm him the best she could.

We were in a room with a sliding door like a patio door.  Every time the nurse would leave, she would leave the door open a crack.  Jackson would run over and try to escape.  His head fit, but his shoulders didn't.  He would stand there with his head out the door howling, "Wanna go home in Daddy's car!" People walking by would either laugh or give him a sad face.

After the vitals were taken and a million questions answered, out came the versed.  Jackson was instantly relaxed (or drunk, depending on how you look at it). He kept spelling dentist over and over again and singing Take Me Out to the Ballgame.  The anesthesiologists came in and asked me what he was saying.  They were really surprised he could spell.  Jackson surprises so many people with what he can do!

They were then ready to take him back.  The lead anesthesiologist carried him because they were afraid that he would try to jump off the gurney.  The nurse with her said she just wanted a cuddle.

After about 45 minutes, the surgeon came out and said that the troublemaking tooth was out.  She had to pulverize it because it was so impacted.  She said she put in a few stitches to help avoid a dry socket.  I was really relived he did well.

The regular dentist came out a little while later and said they finally got a full set of X-rays and we would discuss them at his next appointment.  While they were taking the X-rays, he lost a a baby tooth.  So, two for the price of one.  He also had some "trauma to his lip" she said.  Turned out to be a slice along his bottom lip.

They took me back to see him and he was sobbing and coughing that croupy cough.  Every time he is intubated, he ends up with airway irritation.  The anesthesiologist gave him some steroids, just to be safe.

Poor guy kept saying, "What happened to Jackson?"  His bottom lip was huge and he was very, very angry about the iv in his hand.  They wouldn't let us go until he drank something.  He finally took some water and we got to go home around noon.

The next day his cheek was huge and he had a big bruise on the back of his hand.  Tylenol 3 helped keep his pain under control and he went back to school on Monday.

Hopefully, there won't need to be anymore teeth taken out after the X-rays are reviewed.  My guy is such a trooper.  I have some pictures to post, but I can't figure out how to do it on the iPad.

Object du Jour:  he's back in love with the iPad after a short hiatus.