Tyler - 15 month checkup

Tyler weighed in at 25.5 pound and is 30.5 inches tall.  He is in the 60th percentile verses other kids his age. 
Only concern for him is that one again, he is not saying any words.  I take that back, he will say Chloe.  He will copy me when I call for her, it's very cute.  So I guess they say he's not saying any functional words yet.  Which he should be saying new words daily... and have a vocabulary of 15-20 commonly used words by 18 months (which is 3 months away).

Our doctor seemed ready to refer him to Children's Mercy for a speech and language evaluation but I asked to make note of it and refer us at 18 months if there is not improvement.  Lee from first steps said I didn't need the referral from CMH and that we can get Tyler tested with them simply as a parent referral. I'm not sure which route we are going to take but I do know if he still hasn't spoken in 3 months we are starting early intervention.

Tyler also need to have his blood drawn for a lead/iron screening.  So I had to take him over to the lab in the hospital for them to draw blood.  Poor little dude did not enjoy that and was completely ready to go home after all his shots and pokes!

Jacob - 6 year physical

Jacob's checkup this afternoon proved that he is 100% healthy and a small fry!

He is 3 foot, 6 inches tall and 40 pounds.  However, he is only it's the 5th percentile in weight and the 15th percentile in height!  Which by itself can be alarming, but he's been on a constant growth all his life.  His chart shows he's gaining weight and getting taller every year.  Plus, his momma was a pretty small kid growing up.  :-)

Jaxen's Speech :-(

Speech and Language of the 18-Month-Old

*Bold/Italic are the things that Jaxen CAN do @ 20-months*

 

Uses 10 to 20 different words

Recognizes pictures of familiar persons and objects

Starts to combine 2 words, such as "all gone", "Daddy bye-bye"

Uses words to make wants known, such as "more", "up"

Imitates words and sounds more precisely

Points and gestures to call attention to an event or to show wants

Points to own toes, eyes, and nose

Brings familiar object from another room when asked

Turns pages of a book a few at a time

Follow simple commands

Makes a tower of 3 to 4 cubes

Knows and says the names of 5 things

Hums and may sing simple tunes

Mixes real words with jargon, on occasion

Develops a play routine

Practices words and word combinations

 



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As you can see, we have some work to do.  Jaxen's speech evaluation appointment at Children's Mercy was a few days ago because he wasn't talking.  And Jaxen was diagnosed with what Jerry and I already knew. . . his lack of talking is NOT normal and it's NOT because Chloe and Jacob do all the talking for him.  Jaxen was diagnosed with a learning disability.  {Man, that is hard to say out loud!}  Jaxen's Receptive language is completely average for his age group.  He understands and comprehends language as well as any other 20-month-old.  However, Jaxen does not have the ability to express himself.  Scoring only a 75, he was diagnosed with Expressive Language Disorder with Articulation Impairment.  Age Equivalent: 10 months.

As hard as it had been to get an official diagnosis and to have to say, "Jaxen has a learning disorder", I now know that we can do something for him.  He's not alone anymore, we are all on the same path.  As our family, I think it's important to keep you all up to date.  We have to push him to say something and at this point a sound is as good as a word.  But we can't push too hard, he NEEDS to have a positive experience with talking or we won't get anywhere. 

A learning disability.  That is a hard pill to swallow for me, somehow I feel responsible.  Where did we go wrong?  I feel like we've failed him in someway.  Of course, it's only a personal feeling because I know in my heart that Jerry and I have done and are doing everything we can for Jaxen.  We've had him tested early, and from what we are told, NOW is the best time to get him back on track. 

With starting so early, Jax will have an easier start in school.  There is a HUGE possibility that by the time Jax starts kindergarten, he will have caught up with his peers and be "cured" of his disability.  With that being said, no disability is curable, just manageable.  He most likely will need extra attention for a while, and not necessarily Special Education classes or Speech and Language Therapy.  With intervening early, Jaxen should progress well in school.  It will be the responsibility of his teachers and Jerry and I to make sure that he doesn't fall behind and to get him the resources he needs to be successful in school.

I know school is a long ways away for Jaxen, but that is the goal that we have set for him.  Ideally, we want him ready to enter kindergarten.  Of course, his speech and language will still be developing so the use of a speech class may be needed.  However, the doctor said that Jaxen's burn to his mouth and tongue could have just set him back.  They have seen cases where when the child has experienced a trauma in his life, there speech/language is affected.  But with speech therapy he should catch up pretty quickly.

Now for our game plan.  Because Jaxen is 50% behind in two categories - Expressive Language and Articulation he should qualify for Missouri First Steps.  Which is like a "Head Start" Program; however, Head Start doesn't start until age 3.  I have called Missouri First Steps to see if he qualifies for speech/language therapy but I'm still waiting to hear back from them (Holiday Weekend).  Children's Mercy Hospital put him on their speech therapy waiting list but we are looking at at least a 4 to 5 month wait.  And I am looking into Parents As Teachers through the school district for help.  

I've made a million calls for help and advise.  We are really wanting to get him on track before he falls too far behind.   Yet another hurdle that we will climb with Jaxen!!  It's a good thing we love him!!  Keep him in your prayers.

Doctors & Getting Old

It's been an insane week - too many appointments to keep up with.  Last post was about Jaxen's -month well baby last Wednesday.  On Thursday Tyler had a very uneventful 4-week well baby.

Friday the 13th made my baby 1 month old and brought with it the big appointments.  Jaxen's checkup at the KU Outpatient Burn and Wound Care Clinic.  They gave him the all clear with the burns on his hand and arm.  However, next month we are seeing the head of plastic surgery Dr. Bhavsar to re-visit the idea of plastic surgery to the scars on Jaxen's face.  The concern isn't with the coloring. . .it will fade to the color of his skin.  The concern is for the thickness of the scar. . . as of now it will be noticeable for the rest of his life.  We have a special prescription lotion that we get to apply to his face 2-3 times a day that is suppose to help reduce the scar tissue.  The lotion is so special the Walmart Pharmacy had to order it for us and it's going to take 7-10 days for it to come in.  Hopefully, the lotion does it's magic and Jaxen doesn't have to have surgery.  However, Jerry and I are prepared for some decision making on getting the plastic surgery for Jaxen.  As you all know, this is the year to get it done if it needs to be done since our insurance is maxed out. 

On the way home from Kansas City, Jerry asked me to call and get him an appointment with our doctors office to get his hand xrayed.  finally!  He has been in pain for weeks!  Every time anything touched his thumb he about came unglued it hurt so bad.  And it was getting worse by the day, Friday he couldn't even hold a cup of water to drink!  So it was time to see a doctor - WHY ARE MEN SO DIFFICULT?  Had it been me or the kids, he would have insisted we be seen immediately.

The doctors office was able to see him that afternoon.  The kids and I went with him but ended up staying in the car because it was just easier - Jaxen and Tyler were sleeping, Chloe and Jacob were watching TV.  Well, once again Jerry's blood pressure was extremely high - this is the second time he has been in the doctor's office within the past month and registered a high blood pressure reading.  :-\  {After his doctors appointment we went to Walmart and the blood pressure machine told him to see a doctor ASAP}  Needless to say, Jerry came home with a prescription for high blood pressure medicine and goes back August 2nd for a full blood work up to get everything under control.

His hand xray showed that he didn't break or fracture his hand - instead he was diagnosed with gout. 

Gout is a kind of arthritis.  It can cause an attack of sudden burning pain, stiffness, and swelling in a joint.  Gout is caused by too much uric acid in the blood.  Most of the time, having too much uric acid is not harmful.  Many people with high levels in their blood never get gout.  But when uric acid levels in the blood are too high, the uric acid may form hard crystals in your joints. 

The doctor told him that gout is found mostly in men and it can bring a grown man to his knees overnight.  So Jerry also got a prescription for an anti-inflammatory to take care of his pain.  The gout will go away in a few weeks but they can't really treat the gout and put Jerry on blood thinners because of his high blood pressure issues.  So hopefully, this all helps him manage his pain and come August 2nd they figure out all the little things that are wrong with him. 

Geez!  He's falling apart on me already!  I know I shouldn't but I can't help but tease him.  It's all really funny to me, I thought I was feeling old and falling apart after birthing four kids!  Although he's making me scared to turn 30. . .

. . . I have two weeks before all the doctors appointments start up again. . . I think I might have to get a bigger calender!

Jaxen's 18-month Update

Jaxen's 18-month update was this afternoon.  Thank goodness the doctors office calls a couple days before to remind you because I didn't write it down in my planner.  And in fact, when the office called I didn't even listen to the message, I assumed that they were reminding me of Tyler's appointment on Thursday.  However, when they called again the following day to remind me of Tyler's appointment.  So I re listened to the answering machine message and it was in fact for Jaxen.

Jerry stayed home with Chloe, Jacob, and Tyler.  It was just me and Jaxen.  :-)

After all the basic question and answers that happen at every well baby checkup.  Jaxen completely excels at his 18-month milestones - walking, running, climbing, clapping, drinking from a cup, feeding himself, etc.  He excels at everything EXCEPT talking.  By now Jaxen should be saying at least 6 words fluently - the absolute minimum.  So by it's self, the lack of talking isn't a huge deal - most 3rd, 4th, 5th born children are slower to meet certain milestones because they don't have to with older siblings.  It's a little odd, that Jaxen is excelling at everything else except one thing.  So we are being referred to a Speech Therapist to verify that there is something going on with Jaxen. 

The doctor thinks Jaxen is fine and that he will develop his speech in his own time.  BUT if there is a problem - it is 10 times easier to correct a problem now, verses when his struggling in school.  :-\  So we are just waiting on a call from the doctor's office letting us know when Jaxen can be seen at Children's Mercy's Speech Therapist.

Jaxen also got caught up on his shots this afternoon.  I'm not sure why and how we fell behind with Jaxen's immunizations but we did.  And because we had to switch doctor's, our new doctor wanted to wait until they received Jaxen's medical records to verify that he didn't receive the immunization.  It's been a crazy fight with the lab personnel to get Jaxen up to date because they didn't want to double immunize.  But I wanted him immunized because you have to have proof of these immunizations before they can start school.  And it is much easier to hold an 18-month old down for a shot verses a 5-year old!  Dr. Beatty totally agreed with me and got the shots for Jaxen.

Tomorrow, same time/same place is Tyler's 1 month checkup.  :-)

June 14th - Day 1

3:30am - Tyler throw up all his formula from his 12:30am feeding.  =(

6:00am - I woke Tyler up to eat.  He's a super fast, inhaler of food!

6:45am - Clear liquid diet ordered for Breakfast.  Hoping to be moved up to solids by lunchtime!

7:30am - Daytime nurses came on shift and took out my IV, Catheter, AND up'ed my diet to whatever I want!  :-)  I get to get up and walk around after breakfast!!  So exciting!

0:00am - More to come. . .

June 13th - Birth Story

It's official.  Jerry and I are proud parents of four!  Tyler Grayson arrived in his OWN way in true Daily fashion!

6:30am - I woke up after not being able to sleep to well.  Jaxen ran a pretty high fever all night and I was regularly getting up to check on him and get him is Tylenol/Motrin on time.

I remember the time because I was so hot and thirsty.  I got up and went to the kitchen to get me a glass of ice water - which is super weird because water is not my drink of choice, especially with a fully stocked refrigerator of Mtn Dew!

I went in to check on Jaxen before heading back to bed and he woke when I touched him.  I scooped him up and brought him to bed with me.  Jerry cuddled with him while I got him some ice cold apple juice and a dose of Motrin.  Mr. Jax would not settle down and thought it was play time in mommy and daddy's bed so I took him out to the living room where we could lay down and watch cartoons.

10:00am - After getting Jaxen to fall back asleep, I dosed off too.  Jacob was the next kid I saw around 10am, followed shortly by Jerry.  Jaxen was still sleeping on me and had me pinned to where I could not move.

Trying to get a head start on my To-Do List, Jerry got up and around and was headed out to the KC Pet Project to deliver our foster dog. . . she was ready to go back and we didn't want to have to deal with her while I was at the hospital.  Jerry was also going to stop by Lowe's and get a few materials that he needed for his balloon pump that he was making.

11:00am - Jaxen brought me some trail mix that Jerry had left out.  There wasn't much, just a couple cashews, 5-6 almonds, and a bunch of raisins left in the bag.  I ate the almonds and a couple of raisins while Jax ate the rest.

11:15am - While still laying on the couch, I felt Tyler adjust - so I adjusted.  As I did so, I felt a leaking sensation, like he bumped my bladder.  So like every pregnant woman knows, you go to the bathroom so that you don't wait too long and accidentally wet yourself.

I sat up - it leaked a little more.  {FYI - vaginal leakage or discharge is normal this late in pregnancy.  It's your bodies way of lubricating the birth canal - preparing it for delivery}  I stood up with a little more urgency to make it to the bathroom, when I thought - "OMG!"

11:20am - Jacob brought be the phone and I called Jerry.  These were my words and my voice was shaky.  "Jer, I really need you to believe me when I tell you this, but I think my water just broke."  Jerry was on his way to me and the kids.

11:30am - I called Amanda - she's the first person I thought of that had her water break at home.

11:31am - Amanda calls me back!  :-)

I can't tell you every detail.  But I do know that Jacob and Chloe were awesome.  Jake crawled under my bed to unplug my cell phone charger.  He crawled under the crib to unplug my tablet charger.  Chloe got her brothers dressed, shoes on them, AND packed Jaxen's diaper bag with diapers, wipes, and a sippy cup for me.

12:10pm - Kids were dropped off with Jerry's sister in Harrisonville and we were on the road to the hospital.  I called the doctor's office to let them know that I was headed to the hospital because my water broke.  They then let the maternity ward know that I am coming.  It's a locked ward and if they know we are on the way, it speeds up the process.  They had my chart made and my room ready to go when we got here.

1:22pm - I was fully admitted and prepped for surgery.  I finally had details {and the time} to call my mom at work.

3:05pm - I was taken to the operating room for surgery.

3:32pm - Tyler made his grand entrance into the world!

4:10pm - I was back in my room, recovering - before I could see any guests.

6:00pm - Tyler had had his bath and I could finally feel my legs.  Grandma, Grandpa, Aunt Joanna, Uncle Caleb, Aunt Amanda, Jeremy and Carter all got to come back and oogle baby Tyler!!

8:00pm - All my visitors had left and Jerry was getting ready to head home for the evening.  He took the camera - loaded with tons of pictures - for Chloe, Jacob and Jaxen to see.  {I can't wait until I get to see my babies tomorrow!}

After everyone left and it was just me and Tyler, we were able to get a little rest.  Tyler is on a strict 3 hour feeding schedule for the first 12 hours because he is considered a BIG baby and gets his blood sugar tested before every meal to make sure his body is doing the work that I was doing for him.

Besides 20 minute cat naps here and there, I haven't been able to sleep.  Tyler is a spit upper and he's freaked me out a couple of times choking on his own spit up.  So while I'm on duty, I feel obligated to stay awake and make sure nothing crazy happens.

It's A Boy!

Introducing Our Newest Addition!!

Tyler Grayson Daily

 

Born on Wednesday, 

June 13, 2012 at 3:32pm

8 pounds, 9 ounces

19 1/4 inches long

Another one bites the dust

My doctor's appointment went well this afternoon.  Blood pressure - good, weight gain - good, measuring - good, position - head down, heartbeat - amazing! 

I did find out that I am tipping the scales and this is officially my BIGGEST weight gain during a pregnancy.  But I'll take it because Mr. Tyler is measuring ahead of schedule!!  :-)  Which after Jaxen, is a HUGE relief.  I think I seen a sigh of relief on Jerry's face when we got the good news!!

So see, with all that I am doing throughout the day, I am really taking it easy and behaving myself!!  Now, the rest is up to Tyler.  Next Thursday is my LAST prenatal appointment.  :-)

Getting everything lined up, babysitters are confirmed for the older three, Jerry's got all his scheduling all figured out with coming home to feed animals and see the kids, and I am packed and ready to go. . . ready to run when the time comes!

10 MORE DAYS!!

Hospital / Doctor's Appointment

During the past week, Jerry and I have gotten a lot of little things taken care of for the pending arrival of Tyler.  We've gotten another doctor's appointment over with -- leaving on two more!! -- and we've pre-registered with St. Luke's East Lee's Summit Hospital.  If you remember correctly, we pre-registered with St. Luke's the last time around but we were shipped off to St. Joseph Medical Center to deliver Jaxen.  So hopefully, things work out for us this time and we get to deliver at our hospital of choice!  :-)

Since the last time, St. Luke's has added more rooms to their maternity center.  The newly expanded NICU opened in December 2011 and is the only one of its kind in the KC area.  Designed with the needs of families in mind, it includes all-private rooms with room-in space for parents to stay overnight, at the bedside.  Parents also have access to luxurious bathrooms and a large nutrition area.  So this means that for some crazy chance that Tyler has to go to the NICU, he will have his own private room with a bed for Mom and Dad.  And since the NICU has private rooms, he will be allowed visitors!!  Not like Jaxen where you'll have to look through the glass to see -- so no matter what, family can come get up close and personal with our newest arrival.  AND Chloe and Jacob and Jaxen won't have to wait until Tyler gets discharged from the NICU to meet their brother.  {Not that we are planning to have to use the NICU this time around!}

The Maternity Center is a full lock down unit and all visitors are buzzed in before the elevator even moves. The babies are monitored with ankle bracelets that will put the unit into full lock down mode if the baby gets too close to an exit or if the ankle bracelet is removed. A full lock down means that no one enters or exits - this includes the doctor's and nurses. So even if someone steals there badge and has their access codes, it will not do any good because they cannot override the system until all babies are accounted for / away from an exits / ankle bracelets re-attached.

Visiting hours are from 9am until 9pm, only exception is going to be the morning of delivery.  However, my surgery is scheduled at 8am and I will have to go through recovery before anyone will be allowed back to see me. . . so it looks like I can't even see family until close to 11am.  Not sure if you all want to wait that long in the waiting room!  Visitors will be asked to provide the full name of the patient they are visiting (ME!!) and sign in and out of the log book at the front desk.  Visitors are allowed in to see Mom before the c-section or during active labor and are allowed in to visit Mom and Baby shortly after the first hour of life.  The waiting room is stocked with vending machines, coffee, TV, chairs, and couches. . .

And it looks like I am going to be admitted Monday morning at 6am and I will get discharged sometime Thursday.  Mandatory 3 nights stay - Monday night, Tuesday night, and Wednesday night.  Jerry and I are still working out the details of shuffling the older kids around.  :-\

If you want to read all about the last visit we had -- not much has changed except the new NICU.  The post for Jaxen's Hospital Tour is here: Tour of Labor & Delivery and if we actually deliver at St. Luke's we are going to try the Cord Blood Banking again.

Everything is set up at the hospital.  All my paperwork is filled out and ready for delivery.

Everything is set up and approved with Walmart and my Short Term Disability Claim.  Just waiting for the checks to arrive!!

Doctor's appointment had me measuring 37 weeks and still gaining weight.  Heart rate was good and unlike any of the other kids, he reacts to our voices.  And the biggest change/surprise is that Tyler is head down/butt up ready to go.  I actually got to push and feel where his head was sitting. . . super, super low.  Next Thursday I see my regular doctor and I'm pretty sure they will start checking for dilation and effacement.  {Yuck!} 

Only thing left is to finish packing and figure out a game plan with the kids.  I'm kind of hoping Tyler decides to come a week early. . . Chloe's missing out on her final baseball game {and they are only playing 4 games this year} where she receives her trophy because of my surgery.  I'm bummed about that, but she seems to be okay with it.

Lastly, I will leave you with this photo.  My very oddly shaped, uncomfortable belly - all because Tyler has his butt sticking up. . .

Lists

This list is a work in progress. . . updated daily - sometimes hourly - as I think of things!!  With pregnancy brain, I'm needing to write everything down these days!
Things to Do

• Install infant car seat into the Freestyle and the Explorer
• Upload camera pictures and empty memory card
• Bring out the Baby Changing Table
• Organize the baby boy clothes by sizes

Things to Pack

• Mom's hospital bag
• Dad's hospital bag
• Diaper Bag
• Chloe's bag
• Jacob's bag
• Jaxen's bag
• Camera & batteries
• Tablet & charger
• Laptop
• Cell phone charger

Things to Buy

• Camera Batteries
• Newborn Diapers
• Size 1 Diapers
• Wipes
• Pacifiers
• Baby Swing
• Dresser

Things I want {but don't seriously need right away}

• Highchair
• A new Diaper Bag

Baby Calendar

Baby Calendar Update --

Sunday, May 20th - 35 weeks pregnant
Wednesday, May 23rd - Hospital Tour & Maternity Pre-Registration @ 9am
Thursday, May 24th - Doctor's Appointment @ 11:15am
Sunday, May 27th - 36 weeks pregnant  {*This was when Jaxen arrived via c-section!*}
Thursday, May 31st - Doctor's Appointment @ ???? {No openings - waiting for the dr. office to call}
Sunday, June 3rd - 37 weeks pregnant
Thursday, June 7th - Doctor's Appointment @ 1:30pm
Sunday, June 10th - 38 weeks pregnant
Thursday, June 14th - Doctor's Appointment @ 9:30am
Sunday, June 17th - 39 weeks pregnant
Monday, June 18th - Tyler arrives via c-section scheduled @ 8am
                                  Mommy & Daddy have a 6am hospital check-in  :-(

20 day checkup - Good-bye Bandages

This little guy. . .

Jaxen enjoying his fluff-a-nutter sandwich...

. . . is completely free of bandages and wound care!!

Today is a happy day!  20 days after Jaxen's initial burn, we are free and clear of all the "extras" we've had to do since his stay in the hospital!!  No medicines, No scrubbing, No band aids, No Zeroform, No ace bandages and best of all - No fighting him to sit still through another "Doctor Mom & Dad Experiment"!  Just when I was getting use to it and getting his hand wrapped like a pro with the colorful wrap, so that he wouldn't mess with the actual bandages and medicines.  {It's true, the doctor at the Burn Center said that they would hire me to wrap the little kids' hands.  LOL, they obviously don't know my child well enough, because I HAD to do something to get him to leave the dressings alone.  Jaxen could take off the regular dressings as soon as you weren't watching.  And you could bet your life savings that he would have them all removed by morning if he could get to them!!} 

We have another follow-up at the KU Outpatient Burn & Wound Care Center in 2-weeks.  And if everything is still amazingly awesome, that appointment should be Jaxen's final appointment.  Until then, we have to keep his burns lotioned and make sure if he's playing outside the wounds are covered or have 30 or greater SPF suntan lotion on.  I do have some sleeves for his arm - if he will wear them - to help with the sun this summer.  Biggest thing they stressed was to keep it lotioned - not to let it dry out - so that the scar tissue will stay moist and flat until it heals 100% and not to let the new skin get a sun burn this year because it would cause the scar tissue to be worse than it is now.

After our appointment, we took Jaxen back up to the 5th floor's Burn ICU where we spent 7 days.  The nurses were SO happy to see him.  We got to see 2 of our 3 favorite nurses -- Abby and Hannah.  Megan wasn't working today but we told them that we would be back in two weeks to visit again. . . hopefully, she will be working then.  Jaxen was a total ham for the ladies. . . he even got a Popsicle from them.  Jaxen is definitely a ladies man -- and he would laugh when we called the nurses his "girlfriends".  It was a fun visit, so much better than the last time we had contact with them all.  Next time, I am taking some goodie bags to them -- and you bet your bottom each bag is going to have a package of the Girl Scout Thanks-A-Lot Cookies.  = )

Doctor's Appointment - 30w4d

Well another doctor's appointment down - and with all the concerns and issues I have been having, this appointment was one of my longer ones - for sure.

I got to talk to the doctor about these crazy contractions that I have been experiencing.  She was quite adamant that when the contractions start I am to drink 32 ounces of water and get off my feet.  I told her that that wasn't possible while I was at work.  And she said that we might have to start making some tough decisions because it's SO much easier to take care of mom while pregnant, than to care for a preterm baby.  She was pretty straight forward letting me know that if I continue to push, I am only making it harder on myself and the baby.  If I push too hard and can't stop the contractions on my own, the hospital will have to stop them for me and then I will be on bed rest for the rest of the pregnancy.  And that's only IF the hospital can safely stop the contractions.  Every contraction that I have is just another opportunity for my scar to tear/wear out.  Contractions are considered "normal" at this point.  However, after an hours rest and 32 oz of water - I should have no more that 6 contractions an hour - otherwise, I'll have to go in and get checked out - even if it's nothing and they send me home.  Something about needing to see the progression of everything -- she will have a better chance at making the right decision if she had a road map to look back on. 

So the doctor didn't "officially" pull the "No More Work" card today. . .because legally I CAN still work.  I haven't started dilating and I am not on bed rest.  However, she is going to put some restrictions on me and my activities.  I won't know the details of the restrictions until Walmart receives the paperwork from the doctor - which should be in 5-7 days. 

Jerry and I went in and talked to personnel about what could happen and what my options were.  I know that everyone says that Walmart cannot terminate me because I am pregnant.  However, they CAN terminate me because I can no longer fulfill my job requirements.  I know I can work this weekend without restrictions because I doubt the doctor's office will get the paperwork faxed that fast.  But next weekend, I don't want to be surprised by a management meeting where I am forced to make a hard decision by myself.  So Jerry and I went in together and got to get our questions asked.  Depending on the doctor's restrictions -- Walmart may or may not force my Maternity Leave.  My job description states that I have to be able to lift 60 pounds without help and stand for long periods of time.  Both are things the doctor talked about limiting.  {First off, I think the weight limit for ANY pregnant person is 20-25 pounds throughout the entire pregnancy.}  So I might be in a little pickle.  At this point -- FMLA only covers 12-weeks of leave, this being said I would HAVE a job when I was ready to go back to work but it just might not be the job I currently have. :-\  Which is scary to think I would have to do a job that was available - whether I liked it or not.  BUT I would have a job. . . which we need to support this family.

Arg!  So much to think and worry about.  I am loosing sleep over all this. . . Jerry is okay with whatever the situation is.  But I feel as if I would be letting him down if I was forced to go on leave a month early.  He would then be the sole provider for this family and that's putting a lot on his shoulders.

Anyways!!  On a positive note, I am NOT dilating yet -- we got the joy of checking today, just to make sure that the contractions weren't doing anything yet.  The moment I start dilating it's almost game over for me because of the added risk going into labor provides!  The baby's heartbeat and measurements are right on track.  At this point, there are no signs of anything going the way Jaxen did. . . but everything can change in the matter of hours. . . such a horrible game to be playing.  Blood Pressure and weight gain are good. 

C-section is being scheduled and they should call me with the time and date by Monday at the latest. At that point we will schedule a visit to the maternity ward to check things out, pre-register, and get our questions asked.  Ideally, the c-section will be scheduled in my 39th week -- leaving only 8 weeks and 4 days to go!! 

May 3rd is my next appointment.

It's good to be home.

Well you all know how it goes, it was easy to update at the hospital when the big kids were with Grandma and Jax was pretty out of it.  Since being home, life is back to it's craziness!

Jaxen is doing SO well!  He is getting into everything and keeping us on our toes.  Giving Jaxen his medicines and cleaning his wounds takes A LOT of time.  A made a chart to hang on the refrigerator - just to keep us all on track of when Jaxen gets his medicines.   He takes 4 different types of medicines, with a total of 6 different doses - not counting the Tylenol that he can have every 4 hours.  I am so glad that most of the medicines are about to run out.  It will really help out when we aren't on a constant time constraint with medicine schedules.

We also have to clean and re wrap Jaxen's burns once a day.  You can only imagine what kind of chore it is to have a 15-month old sit still long enough to wash, medicate, and wrap his arm and hand!  His lip is easy to take care of, but he picks at it a lot because he can.  So the key has been for us to keep the medicine on it - which keeps it moist and keeps it from scabbing over.  It's looking better and better every day!

The one thing that I am concerned about is Jaxen's breathing.  It's still quite labored at times. . . the medicine doesn't seem to be helping a whole lot.  I'm going to check with the KU burn center, but I think I'm going to have to get him seen by a Respiratory Specialist.  However, I'm not sure if I am suppose to go through the hospital or through Jaxen's pediatrician.

Jaxen has his first follow up appointment at the Outpatient Wound and Burn Clinic tomorrow at 9 am.  I feel like it's a test on how well Mommy and Daddy took care of him this past week!  I will let you know how tomorrow goes!!

Jaxen - Burn ICU - Day 6

April 6, 2012

1000am - I am so tired and frustrated today. . . it's making for a very emotional mommy.  After all the talk yesterday of going home, it's not looking too promising today.  = (  {I've canceled my doctor's appointment today and rescheduled it for Tuesday -- I can't leave my baby.}

Yesterday evening, Jaxen started sounded pretty rough with his breathing. . . I was concerned and asked the nurse to come in.  Respiratory came down and ran all kinds of test and hooked him up to a few machines. . . everything comes back normal.  He's moving air nicely through his lungs and he's getting enough oxygen saturation {Only time that the saturation went down was when the doctor was standing here -- imagine that!}.  Doctor ordered another chest xray to see if there is still fluid in his lungs. . . if there is, the labored breathing is helping him bring the yuck out.  For as much as they think it's nothing but time Jaxen is going to need, it sounds like they are wanting to keep us another day to make sure.  They are afraid that if they send us home, we might end right back up in the ER with him.  Which I totally understand but I am SO ready to go home.  I am missing Chloe and Jacob like crazy.  I am tired of doctors and nurses terrifying Jaxen.  I am upset that I might be missing Easter with my kids.  Heck, I've not even had a chance to get stuff for their Easter baskets.  Which upsets me so much!

This morning, Jaxen has had 3 breathing treatments.  Here in a few minutes -- at 11am -- Jaxen is getting started on his steroids and antibiotics {in case there is an infection in his lungs} and while they are making him mad, he's also getting some more Tylenol.

600pm - What started out as a bumpy day. . . has slowly turned out to be a good day!!  First thing this morning, I took Jaxen out of the crib and laid him in bed with me to cuddle.  He liked it.  He snuggled, he slept, he looked out the window, he played with the window nobs -- first sign that my curious boy was on the rebound.  Lookie . . .

So happy to see him exploring again. . .
either that or he was trying to figure out how to break out of the hospital.

 I got to play bad guy today.  Dr. Stall {burn doc} came by and seen Jaxen. . . he agreed with me that the amount of people going in and out was scaring Jax.  He told the nurses to do as little as possible and let him relax and rest.  Our nurse, Hannah, was awesome.  She let everything pile up and then come in once to get everything done -- after he had woken from a nap.  She never woke him up, we were on Jaxen's schedule.  I got to turn away a lot of people who poked there nose in when they snuck past Hannah.  Even house cleaning had to come back once Jaxen was awake.

Daddy and Jaxen cuddling -- he would not let Daddy move!

 This afternoon, after Jaxen woke and had some substantial food, {Vegetable Broth, Orange Jello, Apple Juice, & Ice Tea} I got out the toys I brought him and we played and played for a while.  He loved beating on everything and making his toys talk.  Eventually I got him up out of bed and we tried standing and walking.  Hannah said we could get him out of the room today and let him see more of the Burn Unit.  Jax was super wobbly at first -- I would be too if I was in bed for 6 days! -- but he quickly gained his sea legs and started walking around and eventually ventured out into the nurses station.  = ) 

We even got to give Jaxen a bath this afternoon!!  He didn't enjoy it as much as he would of at home but he played.  Here he is fresh out of the bath, all cuddled up under a warmed blanket!!

930pm - Sorry about cutting the last post short, but we had a little adventure.  They had a critical patient coming in and needed Jaxen's ICU room. . . which was cool because Jaxen had been downgraded by the burn team days ago - it's the Peds keeping him here - and they just kept him close by because they wanted too.  = )   They moved us out into the regular patient burn rooms -- which surprised me, I thought we'd end up in Pediatrics.  But apparently, the burn team isn't willing to give him up to the 4th floor OR they are wanting to keep us next door to Labor and Delivery.  {I promise - I really am behaving myself!!}  This room is nicer because it's quieter and it has 2 beds instead of one, so Jerry and I don't have to share a single sized hospital bed.

Shortly after they moved us Joanna and Caleb arrived to visit.  But before I could get downstairs to them, the Peds doctor stopped by.  Not at a good time for Jaxen, might I add.  He was doing SO well, but the 10 minutes the doctor was in - he was breathing funny again!  Grr!!  So we are going to re-evaluate him in the morning and only then talk about going home. 

1000pm - Jaxen is asleep, they have been in to give the rest of his medicines and to take his vitals.  Hopefully, little dude can sleep until morning.  His next medicine is due at 5am - if he wakes up before we will give it to him then, otherwise we will put it off until 6ish.  Only bad thing is that he has to have labs drawn but they are going to do it all together in one shot so that he can get some rest before the doctor's visit in the AM.

Jaxen - Burn ICU - Day 5

April 5, 2012

700am - Like I've said before Mr. Jaxen is a fighter.  Daddy took the night shift and let me get some sleep, I was hurting pretty bad.  Jaxen kept Dad on his toes all night. . . he's coughing up a lot of mucus.  Which is a good thing, he's clearing his lungs.  He freaks out a little with the suction straw, so for the most part he is being allowed to cough it all out himself.  They have also fed him all night long through the feeding tube. . . which he hates.  So needless to say, Jaxen and Daddy did not have a good night.  Hopefully, this morning they will turn off his feeding tube and at least allow him to rest comfortably for a while.  Nurses are in the process of changing over now, Daddy's going to try and get some sleep {at least until Kylie gets here to see if he'll eat} and Mommy is coming back on duty.  I hope you are all having a fabulous morning. 

Jaxen - Burn Unit ICU - Day 5

430pm - Wow, the day has gotten away from me!  Jaxen has made some BIG advances today.  This morning the Peds Doctor was in before her shift - bright and early! - to check on little man.  Even though it was a rough night, she was so happy with his progress overnight.  During the nurse shift change, our nurse from yesterday came to check on Jax and I questioned when the last time he had gotten a pain reliever. . . Noon yesterday!!  My poor baby!  We quickly put an order in for some Tylenol. 

Kylie was here as promised to let Jaxen try some food.  He did really well with the swallowing of juice but he was having troubles swallowing chunks.  Kylie was thinking that the feeding tube was hindering his ability to swallow correctly because he is so small.  After talking to the doctors about the feeding tube - they agreed to remove it and let him try to eat.  Yay!!!  However, before the tube was removed, Jaxen did throw up a lot of mucus and part of his foods. 

After resting a while, Kylie came back and let Jaxen try again.  He did wonderful!!  He ate applesauce, apple juice, fruit, and graham crackers.  Kylie game him the green light for food. . . Doctor's said he can start with a liquid diet today, whatever he wants tomorrow.  {But since Jax is friends with all the ladies on the floor, he got some applesauce from his nurses. . . and technically, it's not on the liquid diet.  Shhh!}

Here we are after the feeding tube was removed.
A short time later the rest of those stickers and wires were removed also! 

Jaxen has had tons of visitors today - so many that I'm not sure I can remember them all!  I know a nurse from the Outpatient Burn & Wound Center came up and talked to me about the physical therapy that Jaxen is going to have to have.  We will have to stretch and massage the scars on his face so that they heal correctly and without scarring - and they will show us how and work with us to get it done.  Jax will have multiple appointments with the department to make sure everything is perfect.  A cool little fun fact - considering the circumstances, of course - Jaxen will get a little "Micheal Jackson" glove for his hand like Grandpa had!  :-)  After the wounds all heal closed, Jaxen will start having the medicines and creams to rub into his burns -- again, all that will come from the outpatient clinic downstairs once we are discharged -- for now we have to keep an ointment on the wounds until they heal closed. 

A child psychologist came by to talk to us about the fears and behavioral issues that we might now experience with Jaxen.  He was really nice and super helpful, even giving us advise on how to address somethings with Chloe and Jacob.  I have his card and he welcomed communication even after we get discharged.  A team came by to show Jerry and I how to change the dressing on Jaxen's wounds.  Jerry was awesome at it!  But had we not felt comfortable in changing the dressing, they were going to set up a at-home-nurse to help us out with the task.  But since Jerry proved to them that he was a pro -- they will send us home with EVERYTHING we will need. . . right down to the scissors used to cut the old dressings off!

As you can see, these were just a few of the many visitors that we have had.  There was a Social Worker that came by and helped us out with the paperwork we needed for work.  A lady from Admittance finally came by for our signatures and insurance. . . since Jaxen arrived by himself - they didn't get anything from us.  Also, we've heard there is a visit from a "Toy Lady" in our future. . . the possibilities seem endless!  I am really impressed with this hospital {someone please remind me of this when the bill comes. . . lol}!

Jaxen has ate 2 meals so far today on the liquid diet. . . he's eating broth, jello, applesauce, and apple juice.  Jerry and I have managed to sneak away while Jaxen

Jaxen also had an EKG test done on his heart.  While he was sleeping this afternoon he was having some very irregular heartbeats. . . it would go from 113 to 88 to 97 to 114 back down to 85.  So for precaution AND for mommy reassurance the test was done and we are still waiting for the results.  But I imagine if it was bad they would be doing something about it.

Well it's taken me about 1/2 the day to write this because of all the visitors and hanging out with Jaxen.  I'm sure there is a ton more I am forgetting and will remember later, but I am going to post this so you don't think we have fallen off the face of the earth!

1150pm - Jaxen was FINALLY able to get some sleep. . . it was only a 2-hour nap but it was much needed.  Jerry had to be "Papa Bear" and practically demand that people stay out until he woke unless it was absolutely necessary.  Which most things weren't, they held off on all his medicines and checkups until 1050pm when we opened his eyes on his own.  I had to hang a blanket over the end of his crib so that Jaxen wouldn't wake up to EVERY single person who came to the door. . . the blanket also helped with his anxiety attacks.  Once we told the nurses that he was awake and they could do what they had to do, Jaxen got a diaper change and got all his meds including some more Tylenol.  Now we are back on "Let my Baby Sleep Mode". . . Jax has one more medicine to be administered but it goes into his IV and they can do that once he's asleep.  Jerry walked downstairs to get us a drink {& midnight snacks}, we both got potty breaks, and Jaxen ate {more like scarfed} some more applesauce!!!  :-)

Check back for more updates. . . 

Jaxen - Burn ICU - Day 4

April 4, 2012

200am - Just as promised, Jaxen was switched from one sedative to another.  With the combination of drugs, the tentative plan is to waken him and pull the breathing tubes at 10am - unless Jaxen has other plans, which they are prepared for!  So far tonight he has been a perfect angel. . . besides a low heart rate, which the doctor is still okay with, our new night nurse has yet to believe all the rumors she hears about Jaxen being a rebel!  The Jaxen's "team" hasn't left his side all night and this room has been dubbed "Camp Jaxen". . . everyone is prepared for a fire ant to awaken at anytime!  *fingers crossed* that everything remains this calm and collected. . . if sitting here running through all the scenarios isn't bad enough, watching them wheel in the pediatric crash cart is enough to worry me half to death!  Now they say that it's just a precaution and that when he wakes up, everything that they will need will right there which will limit the running in and out like crazy craziness!  But deep down I know part has to do with his little heart rate being so low.  The Peds doctor did warn me that they might have to bag him in the beginning if he fights, just to make sure he's getting enough oxygen, but they have 100% faith that he can and will handle everything on his own.

845am - Jerry and I actually got sleep.  I know doctors and nurses went in and out a million time last night for labs / medicines / monitoring / etc., but I honestly needed the sleep and they promised to wake me if something was going on.  About 800am, I came to and notice Jaxen was fighting them quite a bit - so now I am wide awake.  Jerry's helping hold him down and keeping him calm.  It's so hard for me to stand over the crib and watch him struggle and cry.  I have to walk away frequently. . . I am not built to be this strong.  Doctor's know of Jaxen's alertness and will be down in 40 minutes {finishing up with another kiddo} or less to remove his tube.  Until then it's a battle of strength. . . Jerry & the team of nurses VS Jaxen.

1000am - Daddy is awesome.

1015am - Breathing Tube, Catheter, and the stomach tube are OUT!!  Only thing still in are the IV's and the feeding tube. . .

1230pm - So Jaxen is awake and updates are going to be a little more spread out.  He is a fast little guy and this morning he has already managed to pull his feeding tube halfway out.  = \  Jaxen is off all his IV medicines - only getting fluid from his IV - so I've advicated for him to get a dose of Tylenol.  Nurses seemed fine with that and will be in soon to give him something for the pain.  The speech team should also be up here shortly to interact with Jax.  They are going to figure out if he's swallowing good and make sure his throat is okay so he can get the feeding tube removed and start eating on his own.  The guy hasn't gotten but one feeding since being admitted Sunday.  Other than waiting for the speech team, Jerry and I have taken turns holding and comforting Jaxen.  He still fights but seems to be getting some good naps in and is less restless.  I will try and get you all updated after our visit from the speech therapy team. 

200pm - Jaxen managed to cough the feeding tube out some more.  They had to call for a chest xray to verify it's placement and calculate advancement.  The feeding tube is going to stay in tonight so that he can get some nutrition.  Jax ate some applesauce for the speech lady but he was still pretty out of it. Tomorrow morning Jaxen will be their first visit around 830-900am - and if he willingly eats and drinks for them, the tube can come out then.  Unfortunately, it looks like we might be here a while longer. . . when things calm, Jerry and I are going to have to figure out what we are going to do with Chloe and Jacob AND figure out something so I don't miss my own doctor's appointment on Friday.  = \

1000pm - Sorry for the lack of updates, but Jaxen is FINALLY getting a lot of deep sleep - in fact, I fell asleep with him around 5pm and didn't wake up until 730pm!  A much needed, solid sleep!  In fact, we found out later that the PICU Doctor came in a we were passed out cold and they let us sleep.  I feel bad that I slept so hard and missed their visit, but the doctor's are thrilled we were able to sleep.

Let's see if I can catch you all up on the events this afternoon.  Jaxen has had his burn dressing changed, linens changed, and a little sponge bath.  They tried to feed him once but he wasn't taking to the tube feeding - it was upsetting him.  This evening they started it really slowly, while we was sleeping and they've increased the speed {however, he's getting agitated again so I might ask them to turn it down a little}.  As much as he doesn't like it, it's giving him some energy and helping dilute the medicines in his systems because he's more awake now.  All the night nurses are on shift now and most of them have stopped by to see Mr. Jaxen. . . he's got quite a following of girls on this unit!  :-)

Other than the feedings, we are just hanging out.  Jerry and I got to talk to the kids this evening.  The first question out of both their mouths was if Jaxen was feeling better.  Chloe wants to know when we are coming home and Jacob talks about how much fun he's having with Grandpa.  :-)  It was good to hear them both laughing and giggling together.  Brought smiles to our faces and made me miss them even more.

Sorry to cut it short but I am not feeling so well - baby is not letting me forget he's here too.  Apparently, it's time for gymnastics so I'm going to lay down and see if he calms.

Jaxen - Burn ICU - Day 3

April 3, 2012
615am - This morning, Jerry and I woke to the sounds of bells, whistles, sirens, code alarms, pagers, and phone ringing.  Quickly followed by a fury of people running into our room.  NOT the way I wanted to wake up this morning.  : \  Our nurse, Wes, was here by himself and Jaxen's oxygen level was around 70% - needs to be in the 90's - and he started coughing.  Jaxen was fighting and Wes knew he needed another set of hands to help so he sounded the alarms.  The team showed up and orders were yelled, people were paged, and the started to bag Jaxen {breathe for him}.  Wes got Jaxen's oxygen tube suctioned out and Jaxen's vitals quickly went back up.  They were worried about him aspirating {throwing up and it getting into his lungs} or removing the breathing tube himself - so they reacted quickly.  Everything seems perfect now, they brought his medicines back up - they were slowly lowering it overnight - and they are going to hold off on another feeding for a little while.  Everyone apologized for waking us up like that, and as scary as it was - yes, I cried!! - we would rather them be on the ball about everything then waiting too late.  Nurses and Doctors are starting to change shifts, so I'm sure we will have some updates this morning. . . Overall - it was a pretty good night.  Mom and Dad got "some" sleep - the nurses were starting to feel sorry for us!

1000am - Some of Jaxen's favorite nurses stopped by to see him this morning.  He's quite the little spectacle on this unit.  They are all use to running in here and calming him down - he's just being himself!  The are so excited to hear that the plan this morning is to keep everything the same and give Jax {& Mom and Dad} a day of calmness so he can relax.  Tomorrow morning they are wanting to take out the breathing tube.  And we have been warned that it will be a difficult process.  Jaxen will have to come out of sedation and breathe 100% on his own at comfortable levels before they pull out the tube.  Now he is breathing on his own but under sedation he's not doing anything extra.  The machine isn't letting him forget to breathe.  They will need to know that he's going to keep his oxygen in the 90's without backup.  SO Mr. Jaxen will fight, kick, scream, hit, cry and just be down right ticked off for a while until they are sure he's able to handle it on his own - then they will take out the breathing tube.  {They say it's like having a straw down your throat - he HATES it!}  They are all confident that Jaxen will then return to his rotten, ornery self once he's unhooked from the machines and allowed to play and be mobile.  And EVERYONE is looking forward to that!  Again, just a matter of time. . . can't rush things because putting the breathing tube back in is NOT an option on their radar.  When it comes out Jaxen is going to be able to maintain and handle everything on his own.

I know I was secretly hoping that they would remove the tubes today but I understand the importance of waiting.  Jaxen is a fighter and he thinks he's ready but he also seems to think he is invincible! 

1030am - Jaxen's oxygen levels were lowered he's not getting any "support" - he is just getting help "maintaining".  His lungs are doing good and they are making sure that there are areas in the lungs that are strong and not going to collapse once the breathing tube is pulled and he's on his own.  One more milestone to reach sometime today on the ventilator - but they are confident that he could reach that milestone now, they just don't want to rush or do too many things at once.  Doctor's are making their rounds and once I get their update I will let you know. . . could be minutes or hours from now - you know Doctors!!

11:15am - Doctor's made their rounds.  They are so pleased at Jaxen's progress over the last couple of days.  I'm not sure how they see progress while he's under sedation, but they do - so that's a good sign.  They adjusted his ventilator again - getting close to not having to have it!!  They have plans to adjust the pain and sedation medicine overnight so that by morning he is ready to get the tubes out.  Jaxen and Daddy are napping peacefully. . . for the moment! = )

1220pm - Jaxen did it again - only this time he pulled out the IV in his arm.  The nurse came in to adjust the bed differently to try and keep him comfortable.  I was helping her move Jaxen down in the bed when I noticed that there was blood in his arm splint and upon looking further the splint was wet.  That's when we found that the IV was pulled out and Jaxen wasn't getting ANY of his sedation.  So you can imagine how the last couple of hours have gone. . . Ahh!!  It's a good thing that they had placed an IV in his foot yesterday so they were able to hook him back up pretty fast.  He's better now, under sedation again.  They are wanting to change the dressings on his burns but will wait until they know he is completely back under and comfortable.  He's also been ordered up a round of labs at 1pm - which means that they will have to replace the IV in his arm.  = \  So for obvious reasons it's good to have the backup IV.

325pm - Jerry and I got some lunch while they gave Jaxen his new IV.  And actually Jax did so well that he got two new IV's.  They also took an xray

Jaxen's burn dressing, diaper and bedding.  They upped his medicine so that they could clean out the burns - all the dead skin had to be removed - and Jaxen did perfectly!  He didn't even flinch until they were done and the medicine was applied.  His biggest flight is that he wants to lay on his belly and he can't with the tubes.  Other than that his nurses are calling him a Rockstar. . . Mommy and Daddy are still sticking with Monster!  = )

620pm - Doctor in charge tonight walked by Jaxen's room as he was fighting / biting on the breathing tube - which sounds the bells and whistles.  He just got another dose of the steroid - so that goal of 24-hour steroids has been met.  Right now the doctor's are disagreeing on what to do.  Tonight's doctor is wanting to do it now while there are more nurses and staff around to handle him verses waiting until 2am when they change his sedation and he removes the tube himself.  ALL his nurses are saying he's ready and fighting for the removal of the tubes tonight.  Will keep you updated!!  *fingers crossed* that no matter what the decision it's what's best for Jaxen.

900pm - Well it looks like the doctor's are going to wait until morning to pull the breathing tube.  Jaxen got so restless that the nurses spoiled him a little bit and picked him up allowing him to stretch and be held.  He cuddled with one of his nurses for about 20 minutes before they laid him back down.  Since laying him back down, Jaxen hasn't moved.  He's being a good little boy on that end.  However, the main concern now is his heart rate.  The peds doctor has been by to see Jaxen and has assured me that he's doing fine.  BUT his heart rate is slowly falling into the 50's.  So I ask that everyone keep Jaxen in their thoughts. . . he has to get that number back up, if nothing else, at least for me!  I'm barely hanging on with all these numbers and alarms!!

{check back throughout the day for updates...}

Jaxen - Burn ICU - Days 1 & 2

April 1, 2012
400pm - Jaxen pulled the iron on to him burning his bottom lip, cheek, tongue, arm and hand.  Left immediately for the ER.

430pm - Cass Regional took him straight back to a room and started IV.  Nothing more our little hospital could do for him - started making plans to get Jaxen transferred to another hospital.

440pm - Knew the seriousness of his burns and started making plans for Chloe and Jacob to be picked up.

447pm - Mom, Joanna and Caleb were on their way.

600pm - Jaxen gets a breathing tube for his LIFE FLIGHT to KU Medical Center.  Jaxen gets loaded into the helicopter at 6:06pm... a prayer goes up to keep my baby safe until I could get to him. :-(

610pm - Mom arrives to get the older kids.  Calmed Chloe down and got them situated with Grandma, Aunt Jo and Uncle Caleb.

645pm - Jerry and I are on the way to KU Med to be with Jaxen.

730pm - Doctor came to talk to us in the waiting room. Jaxen will be okay but they are sedating him overnight. Giving his body time to process the trauma and the swelling to go down.  Will know more tomorrow.

900pm - FINALLY able to see Jaxen! A little overwhelming, with all the tubes and monitors. Sat with Jaxen for a while, just talking to him.

1100pm - Jerry and I left to go home and shower and get stuff to stay with Jax. Nurse encouraged us to bring back toys and blankets for him.  Filled up with gas, showered, packed, put the trash out, and ate dinner.

April 2, 2012
215am - Back at the hospital with Jaxen. His temperature was high and his heart rate was fast. Nurse said it was normal - Jaxen's room was set cooler and they ordered up some Tylenol. He started fighting sedation - very hard to watch him fight them... gave him more sleepy medicine. Changed out his breathing tube while he was being extra sedated.

400am - Drew blood for labs - checking electrolytes, platelets, white blood cells. His temperature is on its way down.

720am - Jaxen woke up fighting mad.  Rolled over on to his belly and pulled out the breathing tube.  Our room quickly filled with doctors and nurses trying to get him calmed down and stabilized. Jaxen progressively got worse and Jerry and I were asked to leave while the put a new breathing tube in. Gave us some much needed away time - it's so hard to watch him fight.

930am - Jerry and I were allowed to come back into Jaxen's room. He was all relaxed and back under sedation. Having to put a second tube in isn't helping him along. In fact, it set him back a day. Sometime today he will get a steroid to help the swelling and once the breathing tube has wiggle room AND he doesn't need extra oxygen - the breathing tube will come out. The only problem that he caused when he rushed the tube removal, is that there is a possibility of a build up of fluid in his lungs. Doctor's are watching for it, Jax is in good hands. Meanwhile, Jerry and I are on alert - watching for him to stir, we cannot let him remove his tube again.

1000am - Distribution Center called to get an update on Jaxen. Already have us covered for work this weekend... and as soon as things calm down around here we will get a FAX for the doctors to fill out giving Jerry and I intermittent LOA. For future days off without punishment if we need them to care for Jaxen.

1145am - Got visitors from the Distribution Center. Jerry's bosses came by to see if there was anything we needed from them. Around the same time, Jaxen started running a fever. During the time that they were giving him Tylenol, Jax got agitated and started to fight sedation. The room room filled with nurses once Jaxen started vomiting. Once he was calmed they changed out his crib sheets and the ventilator because the sensor was going off every 2 minutes.

122pm - Jaxen's flow sensor on the ventilator keeps going off and they are trying everything to fix it. It's bothering them more than it is us. Once his nurse gets back from lunch we are going to find some food. I'm starving!!

300pm - Back from lunch and the nurses were trying to stabilize Jaxen. He was fighting mad. They replaced the heater on his ventilator and replaced the tape holding in his breathing tube. Ordered up a new sedative since the current one isn't doing the job. Hopefully, he is able to rest without fighting the sedation. Really waiting for the doctor to make rounds. He is fighting the breathing tube and the sooner we can get it out the better - so we are waiting for the okay to give him a steroid.

430pm - Suctioned his lungs, everything is looking good on that end. He woke and moved around. Poor guy can't even cry... he just cries with his eyes. Nurse felt sorry for him, gave him more pain medicine. Respiratory Team was up messing with his machine again... alarm still hasn't stopped going off. Dietitian visited to get an understanding of how much he eats and drinks. Tonight he is going to get feed through his feeding tube, because with the breathing tube he's been throwing up anything in his belly. The feeding tube will get the food past his belly so he'll get the nutrition without the vomiting. 

445pm - Visited by the PICU {Pediatric Intensive Care Unit} doctor and they talked about changing his medications. . . trying to wien him off of the heavy stuff.  He's GOING to get his steroid shot tonight and hopefully get the breathing tube out tomorrow evening / Wednesday morning. 

800pm - Not too much going on. . . We are waiting for the attending doctor to make his way up to us.  They are talking about changing out his sedative to straight Morphine because he is fighting so much.  The nurse was has no idea how he is still awake and fighting. . . if any of us had that much medicine in our systems we would be out cold.  Also waiting on a PICU ventilator - supposedly they read differently and they are tired of messing with the alarms on the type he has now.  Jerry's currently sleeping pretty good while doctor's and nurses come and go.  I'm up for a little while watching over our Jax.  Once he calms down - hopefully soon! - I will get rest to be ready for tomorrow's events!

900pm - Jaxen is maxed out on all his pain/sedation medicines and right now it's taking 4 nurses to hold him down and keep the breathing tube in.  The attending doctor is on the way to approve stronger/more sedation. Main goal is NOT to let the breathing tube come out until he gets at least one more shot of steriods in his system! It's going to be a LONG night!

920pm - Doctor approved to up his meds a little bit.  She's hoping instead of changing the medicine again, the new medicine cocktail plus some food in his belly might help him calm down.  They think he's hungry. . . so they are getting ready to start feeding him through his feeding tube to get something in his belly.  They are starting out small - like 30cc's in 30 minutes - then waiting an hour to see how he reacts.  If he doesn't get sick then he will continue to get more food.  Jerry's still snoozing. . . = )

1100pm Update - First off, Jaxen gets to eat the rest of his food.  He did not vomit anything up!!!  At about 1015pm, Jerry and I stepped out to go to the bathroom and to grab a bite to eat.  With all the commotion, we waited too long for anything to be delivered to us - so we drove to Taco Bell and got some food.  When we got back, the nurses were back in the room.  My heart sunk. . . I'm thinkin' that I'm never leaving him again!  But they said that he was coughing a little, so they suctioned out his lungs - he got restless but didn't fight.  He never threw anything up so he was able to start back up -- by morning he should be nice and full and ready for whatever they throw at him. 

Here's hoping for an easy night. . . I could use some sleep.  If nothing else major happens in the next hour, this will be my last post on this entry.  I will start a new on for day #3 - it's getting too long and I don't want to accidentally delete everything trying to edit the post.  So I leave you with happy thoughts for a positive post in the morning!  = )