Wednesday, January 5, 2011
Tuesday, January 4, 2011
BACK TO SCHOOL!
Today was the kids first day back to school.Landen got right up and dressed He acted excited to be back in the swing of school.I was not i missed most of his holiday vacation with him and just felt our time was to short together.I missed his giggles and shenanigans i just missed my little boy.He came in the door and i said how was school?He said it was fine lol.Usually he says OK.
The house was so quiet with just Michael and I and baby Jax.We have no appointments for the rest of the week .Matter of fact i don't think we have any next week either.
Still waiting on Jaxsons supplies to arrive he is out of noses.They said they would be here tomorrow or i hope.Michael and I did his first trach change here at home today and it went really smooth.I don't know what i was expecting but i am happy it went so well.I do worry he is coming down with a cold.Now mind you he was not sick until he got his shots which i find odd.He gets his shots and an hour later his nose starts running and is still running all day today.
The grant application to get help paying for wheel chair was mailed a couple days ago i hope to hear good news on that.Otherwise i don't know what we will do we just do not have the 1,400 needed left to be paid.I should hear something soon and hope to hear the wheelchair will be delivered soon its been a long wait for his wheelchair.
We cannot get any nursing for Jax !Our insurance will not cover it so this puts me on hold of getting a job.We will survive we always do.Michael is a great help with all the care of Jax and caring for Landen.Its nice to have both of us on deck at all times with our sweet boys!
The house was so quiet with just Michael and I and baby Jax.We have no appointments for the rest of the week .Matter of fact i don't think we have any next week either.
Still waiting on Jaxsons supplies to arrive he is out of noses.They said they would be here tomorrow or i hope.Michael and I did his first trach change here at home today and it went really smooth.I don't know what i was expecting but i am happy it went so well.I do worry he is coming down with a cold.Now mind you he was not sick until he got his shots which i find odd.He gets his shots and an hour later his nose starts running and is still running all day today.
The grant application to get help paying for wheel chair was mailed a couple days ago i hope to hear good news on that.Otherwise i don't know what we will do we just do not have the 1,400 needed left to be paid.I should hear something soon and hope to hear the wheelchair will be delivered soon its been a long wait for his wheelchair.
We cannot get any nursing for Jax !Our insurance will not cover it so this puts me on hold of getting a job.We will survive we always do.Michael is a great help with all the care of Jax and caring for Landen.Its nice to have both of us on deck at all times with our sweet boys!
Monday, January 3, 2011
JAXSON'S NEW PEDIATRICIAN!
Jax had an appointment today with his new doctor at children's mercy.They started a program for medically complex children so i feel better with Jax being seen by this doc.He gave Jax some immunizations today.Jax has gained 1 lb now that he got the trach he is not vomiting at all anymore so they think lack of oxygen is what was causing him to vomit.
We can not get nursing care as our insurance will not pay for it.I am so bummed as i really need to get a job.Money is tight right now.We have not received his Trach supplies so the doctors office was working on it.I don't know what to do we are running out of things fast.He is out of noses and trach pants.We are using his gtube pads(bigger trach pants) for his trach.I pray his supplies come quickly.
Tomorrow is another day of gathering paperwork for all 3 of my kids.We are getting their citizenship done.I will be so happy when its all sent and we get their lovely citizenship in the mail.We finally got the Christmas tree down and the decorations put away.
The kids go back to school tomorrow so it will be so quiet with Jax and I and Michael here tomorrow.I think they are ready to go back.
We can not get nursing care as our insurance will not pay for it.I am so bummed as i really need to get a job.Money is tight right now.We have not received his Trach supplies so the doctors office was working on it.I don't know what to do we are running out of things fast.He is out of noses and trach pants.We are using his gtube pads(bigger trach pants) for his trach.I pray his supplies come quickly.
Tomorrow is another day of gathering paperwork for all 3 of my kids.We are getting their citizenship done.I will be so happy when its all sent and we get their lovely citizenship in the mail.We finally got the Christmas tree down and the decorations put away.
The kids go back to school tomorrow so it will be so quiet with Jax and I and Michael here tomorrow.I think they are ready to go back.
Sunday, January 2, 2011
BETTER!
Things are getting better with each passing day with Jaxson's care!We change his trach pants and clean the trach area at least 3 times a day.Jax drools so much that he saturates his trach pants.I cant put a bib on him because of trach he needs the over the head ones.We have 3 of those.I need to order some online i guess.The burp clothes help but nothing is fool proof.So to keep his stoma clean and dry we do it 3 times.
We got all his equipment in his room.The first 2 nights he was in our room.I bought a plastic tool box that looks like a dresser and holds the equipment on top and the supplies fit in the drawers.His room now looks like a hospital .It is going to take some time to get used too.
I will be honest i am still overwhelmed with all of this.I slept in his room last night as i am not comfortable being in our room away from him.I do have a baby monitor but still i sleep heavy and i need to be close to here if his SAT monitor beeps.
He does feel so much better though and he smiles more.He moves around allot more and does not sleep as much as he did.These are all great things so overall he is Better.Michael and I both know we will have his care down it just takes time adjusting and learning.We are getting there.Tomorrow is the biggie we change his trach out.
We got all his equipment in his room.The first 2 nights he was in our room.I bought a plastic tool box that looks like a dresser and holds the equipment on top and the supplies fit in the drawers.His room now looks like a hospital .It is going to take some time to get used too.
I will be honest i am still overwhelmed with all of this.I slept in his room last night as i am not comfortable being in our room away from him.I do have a baby monitor but still i sleep heavy and i need to be close to here if his SAT monitor beeps.
He does feel so much better though and he smiles more.He moves around allot more and does not sleep as much as he did.These are all great things so overall he is Better.Michael and I both know we will have his care down it just takes time adjusting and learning.We are getting there.Tomorrow is the biggie we change his trach out.
Friday, December 31, 2010
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.
Thursday, December 30, 2010
Wednesday, December 29, 2010
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.
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