ROUGH FIRST NIGHT HOME!

Last night was a tough one! Jax did not sleep at all and every time he moved his SAT machine beeped.Tonight i am definitely attaching to his toe instead of his finger.He moves his little hands to much for putting on his finger.He also drooled alot last night.It got so bad even after i suctioned his mouth that i had to put a hand towel under him to catch some of the drool.He also required ALLOT of suctioning in his trach last night.I am exhausted and got like 3 hrs of sleep.Hoping later today he will go to sleep for a few hours so mom can get some rest.Right now he is hooked up to a feed and still wide awake.Hoping a full tummy..fresh diaper and some suctioning and his morning med's will help him get some rest.

Today we are rearranging his bedroom to make room for all his equipment he needs.My son Brian said he would Make a bigger baby changer for Jax!I just need to get the materials for it.This would be awesome as he still uses his changer allot just to big for the one he has.So we are building one for him.I want to put the new one in the bedroom with all his equipment so everything will be close by and Handy when it is needed.I am adding a pic of him.we were waiting for his feed and the discharge papers at the hospital.

Baptism!

AT HOSPITAL!

I arrived at noon here at Childrens Mercy!The nurse called ENT nurse and told them we were here so the Ent nurse came up and had us get everything gatherd that we needed to change clean and care for the trach.She watched to make sure we had everything together and watched us clean and change his trach.She said we did a great job and that we can go home tomorrow.Michael and I are doing all his care tonight and today is the day we get to leave and go home!Michael and I gave Jax a bed bath!We washed ,dried and lotioned him.I had brought pajamas and we put them on him.He smiled and was like my mommy and Daddy are taking care of me.He aslo got to be held today and was so excited and smiled and tried to talk to us.He is such a sweetheart!All these nurses love him to pieces here.He just radiates that sweetness from him.This beautiful innocent child that we are so privalged to raise.We can make until tomorrow and we are outta here.I told Jax he gets to go home tomorrow and he smiled really big.

Viisit!

I missed my husband so much and my baby Jax.I was so excited to see them both today.The whole visit at the hospital Jaxson would not wake up and slept the whole time i was there.The surgeon did take the stitches out and changed the trach.He did great and did not cry at all.They also took his IV out today.He was in process of being moved from PICU while i was there.
Michael and i talked to the chaplain and we had Jaxson Baptized today.As we prayed and he laid there i felt a weight lift .It was like yes he Gods child now and i know he is watching over his sweet boy and loves him just as much as Michael and I do.Jax will get a baptism record he also got a teddy bear,and a teddy bear quilt and a baptism Shaw.I promise i will post pics soon the nurse was sweet enough to take pictures for us.
I was going to stay home tomorrow and celebrate Landens Birthday.The nurse told me that if i came tomorrow and stayed with my husband we could do the 24 hr care then we would be released to go home Thursday.So change of plans...I am going to hospital in morning to get this done so we can get our baby boy home.I don't want to miss Landens Birthday as i missed spending Christmas with him.The party has been switched to Thursday evening so we are home to celebrate.
Michael called me a bit ago and told me Jaxson is now moved out of PICU and into a a room.I am so thrilled me sweet baby is doing well and we will all be home as a family again soon.

REARANGING!

I could not sleep so i thought i would post.I am thinking of ways to rearange Jax and Landens bedroom.I may move him into laundry area...LOTS of room away from actual laundry room.Only because it would be closer to us and because their is more plug ends there which we will need for all of Jaxsons equipment.I need to get this done before Jax comes home.Also need to come up with shelving or drawers or something to store all his supplies we will need in.I already bought a shelf to put all his feeding supplies on.
I hope we can decide soon what we will be able to do to get everything organized and ready for our beautiful son to come home.

ROUGH NITE LAST NIGHT!

Jax had a rough night he was running a fever..not sure how high because Michael did not tell me.He did not sleep at all and was up all night and most of the day today.The Ent's did not change his trach today.Something about staffing issues so Jax did not get moved from PICU.Tomorrow morning is when it is scheduled for the Surgeon and ENT to come in and change his trach.He should then go to a regular room.The kids and I are going tomorrow to visit him.I miss him so much and i miss my husband too.We have not seen much of each other.
I come home to rest and end up more tired and worn out at home then at the hospital.Some family things with my sister came up and it has been run run run.I am also planning Landens Birthday party.His Birthday is Wednesday.I am also hoping that is Jaxson's discharge day from the hospital.Its late i am tired and still need to pack Landens diaper bag and pack a few things to take to Jax .I cant wait to get him home.All his presents are under the Christmas tree waiting for him when he gets home.I am hoping i can cuddle my sweet baby tomorrow.They have not let us hold him until the surgeon changes his trach.6 days not in our arms has been rough we held him everyday and held him a bunch.

another Christmas day Pic!

Jax Christmas day in PICU

Christmas day was a great day for Jaxson!He was alert and happy all day.Yesterday was the same he was happy and smiling allday.Today he gets his stitches out and his trach changed.He will be leaving the PICU and moved to a regular hospital room.We are a step closer to coming home.I am still scared as our future is about to change with Jax being full time care now.I know he needed this trach though he was so sick and now he looks better his color is better and he is happier.The hardest part is the fact that Michael and I will do all his care because whoever would help has to be trained to care for him.This i know will be an issue.Pray for us and our son and what our future holds with our Angel.We are on an uphill climb with his medical and praying it gets better for all of us.
We Have made the decision to home school Jax next year.It is best with all his needs and care the he get his schooling from us.

HORRIBLE DAY!

Yes Christmas for me was horrible!I knew it was going to be tough being here on a Holiday!This was awful to be on this floor with really sick babies and sad parents.Then their is visitors all day visiting their loved ones here.Jax and I alone...In a scary and sad place that no one unless they been in a PICU can comprehend.To top it off i was hurt that my Parents could not even call and say merry Christmas.Not once have they called ever.
My beautiful Mother in law called the house to see how Jax was doing how wonderful she is i know she loves all of us as we love her dearly.My parents live 5 miles away and go by my house all the time and NOT once did they ask.Nor bother to say hey maybe we should call Denise and wish her a Merry Christmas after all she is at hospital ALONE with Jax and she is our daughter!I don't want to sound selfish but i feel hurt i mean its a sad lonely place here and how hard is it to call.
Then i was talking on my cell phone and dropped it to the point its in peaces...Nuff said on that .My wonderful husband is bringing a cell phone tomorrow.I miss my kids and my husband i am looking forward to a break but will miss Jax so much!

SORRY NO POST!

I have been so busy between the hospital and home i have not had a chance to update everyone.Jax had surgery yesterday at 1:30 and it lasted about an hour.He now has a trach and he is breathing so great.We had to take a class on how to care,clean and change the trach.It was very daunting and overwhelming.It is allot of information to take in and i thought i was going to break down and cry.I did not though .I went home to rest and Michael stayed last night.I came back today so we could take the CPR class we were required to take and got all that done.Michael went home tonight and will be back on Sunday.So jax and i will chill out here in the hospital for the holidays.
I brought his red Christmas blanket and his picture of him and brother on Santa's lap.The hospital was giving out small trees and bells to go on them.So we got one and now Jaxson has a Christmas tree in his room.While Jax may not be home for his first Christmas we will have one here complete with a tree.I brought one of his Christmas presents with me for him to open on Christmas day.The rest are at home and then what santa brings him as well as his stocking full of goodies will wait until he gets home next week.
Jax is doing really well.He is breathing better and wow has he been a happy guy today.I am scared of the trach a bit but it is getting better.I have suctioned him today the big step will be changing the trach.He is awake right now and watching the mobile the nurses brought in for him.I will be so happy when i can hold him again.

I am home for the night!

Today the ENT came in and we discussed a trach for Jax.Jax will have surgery tomorrow or Wednesday still waiting to hear when to get the trach placed.This is not an option he quits breathing for a few seconds which is apnea.He struggles and works so hard for every breath that he has become tachycardia.He does have Pneumonia and is on antibiotic.I was upset when they told me our sweet baby will not be out of hospital for Christmas.I am really bummed about this being his first Christmas home and all.
In the long run this is for the best for Jaxson's health.It will be nice to see him feel better.I will go to children's when he has surgery and then on Christmas day i will spend part of the day home with the kids and part of the day with Jaxson.Michael is with him and is refusing to leave until Jax is released.I am going to try to make him come home after a couple days.The hospital can wear you out quick so we need to share this.It is hard on me being away from Jax.But i know i am needed here too.Landen is a mommies boy and it is extremely hard on him when i am not here.

Jax needs Prayers!

Saturday Jax had a seizure at 6 pm,It was a grand maul and the first one he has had in like 6 months.About 1 a.m he had another and this one was bad lasting longer and leaving Jax irritable and not feeling well.I went with my mommy instincts and headed to the ER.Once there Jax had another Grand maul so the doctor gave him ativan!This did not work and he had 3 more seizures back to back he was given dilantin which finally stopped the seizures.So he was ambulance to children's mercy hospital.Jax went from seizures to major irritability.His trachea has decided to collapse or so they thought.He was intimated and put on a ventilator.He has now been weaned off and is just getting oxygen now.His sats are staying great and his blood gases were fine.But he still struggles with some type of obstruction in his airway .He works hard to breath but is maintaining.So i set in Picu worried sick about my little man and just wish they could fix all his ailments.
Please keep Jaxson in your thoughts and prayers!I am not sure what they are planning on doing to help him tomorrow!I have had a couple struggles with the docs already!Please pray for my sweet beautiful boy to get better and get the help he so deserves.

NOT MUCH GOING ON HERE!

It has been a normal week of appointments and holiday preparations around here.I stayed up last night and wrapped a ton of presents.I am happy to report i am done shopping now.Michael has a couple presents he needs to get Otherwise we are done.

Cloth diapering...I decided to go exclusively with them.I have tried every disposable for night time and he pees through them all.If i add inserts to the cloth he does not pee through.I was online last night and found some diapers that had really good feedback on them so i bought 4 of them to try.They are super cute too!One is camo..one has jungle animals ..One is orange soccer ball and the other is green soccer ball.If these are good diapers i want to go back and buy the adorable zebra print one.

I was so excited as i thought i had a part time job.It will not be happening i didn't even get to the interview when a call came in saying they changed their mind.I do Patient care attendant where the person i take care of is the person who would hire me.So i start at ground zero for a job.I will wait to get through the holidays then really start looking again after the kids holiday break is over and they are back to school.

That's about it around here !Its been a busy yet Mellow week mixed in one..Kind of odd for the Miller household HA HA.

Another Christmas cutie pic!

TOO CUTE!

INSURANCE WOES ARE OVER!

A woman from our insurance company called today to tell me that the pre existing clause on Jaxson has been removed .It was a glitch on their end and she called excited to tell me it was fixed and all the claims that were waiting are being taken care of today.Even his wheelchair claim..She even called the company that built his wheel chair to Inform them of this.I am just thrilled.All the stress is now gone.
The Supplier for the Mic_key issue and polymem is also fixed.I also got a call the Rudy our pug puppy is ready to come home.I will pick him up on Monday is all goes well.I am so happy that all these issues are fixed and i can relax now!
This will be a Amazing super weekend we have some wonderful visitors coming to see us.I am so excited yet a tiny bit nervous.

DIAPERS!

I use cloth diapers for Jaxson here at home!When we are at appointments or out of the house i use disposable.I am considering going full time cloth.I have tried every disposable diaper on the market and he pees right through them.Cloth he hardly pees out of.I change him often in both disposable and cloth and he still pees the disposables.I do put a disposable on at night and i have put cloth.Either way works and either way at night he pees out.
I have to admit though i have saved a ton with the cloth diapering and i have not minded it at all.I buy 1 case of disposable diapers and they last forever!I have really saved and am glad i went with cloth diapering him.

HOW CAN YOU RESIST!

A beautiful face like this?I love this sweet little man so so much!

ONE OF THEM DAYS!

Where i am frustrated with Insurance companies and supply companies and doctors.It like everything gets on track and then something jumps off the track causing me frustration.Today is one of them when the surgeons office called me.Jaxson has been throwing up a whole feeding at least once a day.Almost 2 months ago we seen the surgeon and told her about it.She sent him for an upper gi to make sure his Nissan was still intact.Everything looked great and all is still good.But the throwing up remains.The sleep doc emailed to tell them of our issue they call today.I tell them i know its reflux as he is doing it during his feed or withing the hour after his feed.They want to do another UPPER G.I. I am frustrated i am telling them what it is just prescribe a med to try and i bet this will stop.
Then the lovely insurance...Somehow his policy has a pre existing clause!It was put in wrong when we put him on insurance and I am working to get this fixed.Policy is..a child adopted does not fall under pre existing as its like the birth of a child.So why are we having issues?
The medical supply is another thorn in my side.The surgeon gave them a script to order the Mic_key and polymem.They call to say they don't supply the mic_keys and they could not read the script for the polymem.I handle these calls and my husband took the call i could not call them back.The surgeon's office is calling apria because they said yes they do supply Mic_keys they have lots of patients that get them from there.Its one thing after another.
I get so overwhelmed as these are things we should not have to fight so hard for.It lots of calls extra testing and appointments that are UN necessary.Its just one of them days!

A NEW MEMBER OF OUR FAMILY!

This is Rudy!My husband got him for me for Christmas!I have been asking for a pug ever since our Bella (Bella was a pug also)passed away.So for Christmas i got Rudy.Rudy will not join us here at home for another week as he is not quite ready to leave his mommies side.I am thrilled and cant wait to bring him home.I picked the name Rudy for him i took one look at him and the name stuck.I hope to get better pictures once Rudy comes home.This was taken on my camera phone.Is he not the cutest?

Depressing appointment!

Jax had his sleep consult today!They are positive Jaxson has some sleep apnea.She noticed how his breaths heavy and his chest wall really works hard to breath.The snoring and the constant raspy sound.She is positive he has pockets in his lung that is collapsing.He got an xray done of his lungs.She set up up a sleep study but we don't have the date yet.He will also be seeing pulmonary for his asthma she thinks albuteral is not the answer.Also they are FINALLY trying to get a script for reflux..He is averaging vomiting a feed a day.I am Praying that a cpap will work for Jax and not the trach they want to do.I told her we want to weigh and try all options before moving in for a trach.She did agree with this.She also said Pulmonary wants to see him before they script a med to help control his saliva.
Jaxson has scoliosis Rehab had told us it is possible he has it but the doctor today confirmed it.I knew he did as his spine is bent to the side and cause a knot on chest wall.This is all coming together now.Also Jax will be seeing a new set of docs as his primary doc.Childrens mercy has a clinic called the medically complex clinic and he will be going there for his care.Yes its a long drive for us but all interest in my child it is for the very best for him to see these specialist.
I called the company today on Jaxson's wheelchair!It has been way over 3 months and the chair is ready.The insurance company authorized to pay for it and now are holding it up.The company that made the wheel chair submitted for it in October and have not heard nothing from Insurance company.I will be calling the insurance company tomorrow.I am upset they authorize these things and then don't follow through.Jaxson really needs this wheelchair.I cant put him in school without it.Also his stroller is breaking and to be honest i just cant position him right in the stroller.We were really hoping to have the wheel chair before Christmas.
Our insurance has been really good!There is only 2 things we have struggled to get paid..His hospital stay which was authorized and still is not paid.We got the run around on this..First the ins.company wanted a itemized bill i made the call and they received it.Then they tried to pull pre existing conditions!I had them there its illegal and they could not do it and know it.Now they are claiming they are changing their Policy.This bill is from July when Jax got his Mic_key button.Now the wheelchair..which was also pre approved.Hmm isn't it funny both of these are in the double digits and they are refusing to pay but pay for all his other medical stuff?
The kids and husband and I have never had a problem with our insurance covering us.Just certain things on Jax.. I don't understand especially considering the pre approval.Please say a prayer for our Jaxson i am not ready for a trach and pray we can get his Much need wheelchair very soon.

MY TEST RESULTS!FAMILY UPDATES!

The Doctor called and its good news!No mycentic cyst YAY!I have a kidney stone that has not passed causing some kidney pain so i am drinking tons of water to pass it.I am happy as i have nothing that could medically be bad.This is a big relief!
All is well at home.Landen is changing in leaps and bounds!He is talking more and learning to solve problems on his own.It is time to try and potty train him again.We have worked hard on it and the past month i gave up.Well the newest thing he comes and gets me and says...change my poo poo .I told him if you can tell me this you can go on the potty.
Jaxson has had some slide backs poor baby.He has not felt good all weekend.He gets cold so easy poor baby is not used to this cold Kansas weather.His legs are cramping more and more and he is irritable.We continue with sleep issues because of the cramping.I have given melatonin and it does not even help.So Michael and I work in shifts for the nights he wont go to bed and is uncomfortable.At least we both get some sleep and are able to function with the other kids.
Rebecca She is blossoming so much.She is into poetry and History.She wants to learn all about different countries she is really focused on learning about Egypt.She likes to draw and now want to start painting.I made sure she got art supplies for Christmas this year.She is an amazing child and i have been graced to be her mother.
Linda is so excited about graduating high school this year!She wants to attend a college in Topeka next year which is great.She wont be far from home so she can come and visit often.She loves the boys so much and is such a great helper.She wants to be a special education teacher and would be wonderful at this.She helps with a high school boy at her school who is allot like our Landen and the teachers and principle rave at how awesome she is with him.
My 3 grown kids are doing well..Hannah passed her finals that had to be done before Christmas break.William is still struggling to find work.Brian is working for his Dad to make money for Now!He has been applying for other jobs as he is saving for his future wedding to Brittney.I keep telling them both they are young and have lots of time before marriage.

GRAB A KLEENEX!THIS IS VERY MOVING!

NICE DAY!

The weather was beautiful today..Did not need a winter coat a jacket worked perfect.Because it has been so cold the last few days we have kept Jaxson in the house he does not like the cold and shivers.Today being nice Michael and Jax and I ventured out to do some Christmas shopping.I was pushing Jax in his stroller in walmart we were waiting in the check out line when one of walmart employees started laughing and said..your baby just peed on the floor.I had just changed his diaper right before going to walmart .So we checked out and grabbed the diaper bag and a change of clothes(i keep 2 sets in the diaper bag).I got him changed and it was time for him to eat.We hooked him up to a feed and we were hungry so we had lunch at Pizza hut.After we went to a couple other places to eat and then headed home.We did not get allot of shopping done but it was sure nice just to get out of the house.We all needed it.
Tomorrow morning i get my ct scan done.I am praying for good results on this.I don't want it to be a cyst!