Jaxen - 2 week Update

Picture Update on Jaxen - Enjoy!

Jaxen's burn - 2 weeks later.

Jaxen's arm

Jaxen's hand - probably the slowest healing burn he has.

All the goodies you need to clean, care, and cover Jaxen's burns.

Jaxen's Drug Store.

April Calendar

I know the calendar is a little late. . . but here it is.  Lookin' like a busy month.

Sunday, April 1st - {28wks} - *Jaxen ER for burns*
Monday, April 2nd -
Tuesday, April 3rd -
Wednesday, April 4th - Girl Scouts 3pm - 5pm
Thursday, April 5th - Jacob's Easter Party
Friday, April 6th - Doctor's Appointment 12pm // No School for Chloe & Jacob
Saturday, April 7th - *Jaxen Released from Hospital*

Sunday, April 8th - {29wks} Easter
Monday, April 9th -
Tuesday, April 10th - Doctor's Appointment 1145am
Wednesday, April 11th - Service Unit Meeting 7pm
Thursday, April 12th -
Friday, April 13th - Jaxen's Doctor's Appointment @ KU Burn Center 9am // No School (Jacob)
Saturday, April 14th - Amanda's Birthday // Grandma's Birthday

Sunday, April 15th - {30wks}
Monday, April 16th -
Tuesday, April 17th -
Wednesday, April 18th - Girl Scouts 3pm - 5pm
Thursday, April 19th - Doctor's Appointment 1015am
Friday, April 20th - Jaxen's Doctor's Appointment @ KU Burn Center 830am
Saturday, April 21st -

Sunday, April 22nd - {31wks}
Monday, April 23rd -
Tuesday, April 24th -
Wednesday, April 25th - Early Out
Thursday, April 26th -
Friday, April 27th - Girl Scout Camp
Saturday, April 28th - Girl Scout Camp

Sunday, April 29th - {32wks} Girl Scout Camp
Monday, April 30th -

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...}