4 Weeks of Progress!

This Friday puts us hospital free for 4 weeks.  During this last 4 weeks all the tweeks on Jordan's gear has really paid off.  Just a quick update, he had his G Tube replaced, Trache replaced to a pediatric one and cuffed, and was put on a vent.

The idea of the vent was at night time to allow him to breathe deeper, more full breaths and if he has an apnea the machine will breathe for him till he picks back up on his own.  Usually only takes a few seconds.  Anyhow, he was working too hard to breath and the doctors wanted to give him a break at night so he could use his energy to grow.

And grow he has!!!  He looks wonderful.  He is now in his 3-6 month clothes and is actually chunky.  He has also shown a lot of improvement in his development.  The other day when I woke up his nurse had him in his saucer.  He was pushing up with his feet and using both hands to grab at his toys.  It was so exciting to see that happen.

My favorite was last night.  I had him stretched out across my lap.  I was messing with the TV remote and its bright lights flashed on.  He immediately turned his head in that direction and then started trying to reach it.  He was pushing off with his feet, arching his back and his eyes had a lock on the control.  Of course all my wise cracks had to fly at Ryan with the "father like son," and "yes, he is definitely male going for the electronics," etc.  It seriously was so cute and absolutely wonderful to see him set his sights for something and almost turn over and giving it his all.  So much progression.

Since Jordan's trachea change to the cuffed (a cuffed trachea has a balloon that you can inflate to protect the airway) he has a lot of secretions come out of his nose and not near as many are coming from his trachea as before.  It is nice to have a way to protect his airway if he is secreting a lot.

Jordan however HATES having his nose suctioned.  This is no exaggeration.  He may not be able to hear when the suction machine turns on but he feels the vibrations and he detects you coming his way really fast.  I try to be sneaky but it is in vain.  His hand goes up immediately at the first sight of it coming his way.  He is quick on the draw to either block his trachea or his nose.  It is amazing to watch.  My other boys want me to suction their nose so they can see what it feels like.  Why does it seem so much more gross to do the same thing on bigger kids?  I guess that is a dumb question, it just is.  Plus I don't want to have to clean all the tubing and bucket out since it has to be sterile for Jordan.  It seriously can not feel good.  I am sure I would learn to block it coming at me as well.

This last week Jordan met with an ENT doctor that specializes in hearing.  I am happy with him so far.  He does not want to rush into giving Jordan a CT scan or MRI yet.  He wants to wait until he is 1.  In the mean time he wants to retest his hearing.  Once we see if there has been any changes he will determine if he should try high powered hearing aides.  We will see how that goes and then he will be retested at a year.  If there is no change and it continues to show that he is severely hearing impaired then we will get the CT scan and MRI and determine if he has the nerves and anatomy to have a Cochlear Implant.  I am grateful he is in no rush to push forward.  In the United States you can not have the implant until after age 1.  Also, with Jordan's issues he wants to wait and see that as he grows and gets bigger if things will change with his facial nerves.  As he put it, "why expose him to radiation or surgery if you don't have too?"  Love this doctor!  I am fine taking our time and seeing if any changes will take place.  He will be retested next month.

So, my last highlight since the hospital.  The weather was nice enough that I put him in the stroller and we all walked over to the park.  It was so fun and felt so normal.  The kids were excited!  The suction machine does not sound so loud in the out doors so we don't get any one staring at us when that thing goes on.  You could tell Jordan enjoyed it as much as we did if not more.  It had to feel so good for him to feel the fresh air.  I can hardly wait till summer!  I already and trying to figure out adventures he can do with all of us.  What a good place to be in.

Jordan has so much hope surrounding him.  There is no diagnosis that says he won't be able to progress.  There is however also no answers saying he will.  However, I believe he will.  He has come so far already and it has been exciting seeing his growth and seeing and feeling his strength.  He has a big spirit and is so strong and so patient.

I have Jordan in a shirt that(I posted a picture on facebook) says "I was born Awesome." He was born Awesome.  And born exactly how he needed to be.  I believe we have trials for a reason.  We all have to grow and develop in different ways and have different struggles.  He came down here exactly how he needed to.  I am excited to see his growth in his life and to see the magnificent person he will become through all this.

This little boy has touched so many lives and has blessed our family in countless ways.  I am grateful for him and love everything about him.  We are blessed to have him in our family.

Didn't Get Enough of the Hospital the First Time

***I forgot to publish this in February.  I must apologize for not keeping up on this blog.  I have been posting more on facebook because it is easier.  I didn't realize so many follow the blog that are not on my facebook.  So, I am once again going to try harder.  Thank you all for caring enough to make me want to keep this up.

We checked back into the hospital on February 18th.  This time Jordan was having deep retractions.  Breathing was becoming a lot of work.  We went in to his Pulmonologist, Dr. Nicholls.  He sent us for an Xray.  They came back showing cloudy lungs.  An infection was brewing.  We spent 4 days.

So, Jordan had another staff infection and some tracheaitis. We should be home tomorrow afternoon or Saturday. Hopefully we won't be making a habit of all this. When the nursing staff and doctors and RT staff know you by name and you can work most the machines on your own it is time to stay away! Just have to convince Jordan of that!

Jordan was on his new machine still when I woke up his morning. The machine shoots more air up through the vocal chords. You can here him make occasional baby sounds! A first! I couldn't help but cry. He might be on this machine all day at home- j. He looked like he was riding a bike this morning. Kicking and enjoying playing his new tubes. Took a picture, look how good and healthy he looks. His X-ray this morning came back looking good. Thank heavens for antibiotics and good medical care!!! 98% sure we are headed home today! Yay!