12 Days and Counting

All I can say is WOW!  I can't believe we have been in the hospital for 12 days.  I thought for sure the way things were heading on Friday and Saturday that we would have got released on Sunday.  Sunday, Monday, Tuesday and Wednesday he took dips.  His afternoons were great which gave us hope of recovery, we'd come back in the mornings with not great news.  It truly has been an emotional roller coaster ride.

So a short recap.  Jordan has been in the hospital for Adenovirus and metopneumovirus.  Both bad on their own.  Basically an attack on the respiratory system.  Not a good thing for my trach baby!  As of Thursday of last week his fever went down, he was handling his feeds, he no longer needed his IV.  He was looking good.  So good that when I went to the hospital on Sunday I was planning on bringing him home.  As of Sunday he started to desat.  Which means his oxygen levels were low and that he was not getting enough air.  They put him back on oxygen and kept him on the vent for longer hours at a time.  When I left Sunday he was doing well again.  If he could stay that way then he could be released Tuesday.  Well Monday rolled around and he was doing great!  My sister in law came to visit and bring me food.  She held him for a while.  When she was ready to trade me he got his trach bumped which made him cry a little.  He had so many chords that I detached the vent to detangle them and put him back in bed.  Any other day that would not have mattered.  But Monday it did.  He went down to 54 saturation level (should be 100) and was turning blue.  I plopped him in bed and was getting oxygen back on him and the medical team rushed in and helped recover him by bagging him.  His oxygen returned and he was back to normal.  In fact I held him and played with him the rest of the afternoon.  He was so interactive and pleasant that once again I thought we were recovering.  Tuesday morning when I arrived he was completely lethargic and looked past me.  He had another episode like Monday earlier that morning.  By the afternoon again he was back to his playful self.  I called in for the night report and he was still doing well.  Came in this morning and the doctor put him on what they call a "Drager."

The Drager is a vent that breathes for you.  Just so you know the difference, the regular LTV Vent that he was on would just force more air in his lungs but he did the breathing on his own.  The doctors decided to take the proactive approach and give him a couple of days that he wouldn't have to labor so hard to breath. The thinking behind this is that he is under some post traumatic symptoms from his viruses.  His poor little lungs are inflamed.  Which doesn't give him much of an airway to breath.  So instead of struggling give him a little help.  That way he is not working so hard and can get the strength to recover.  They are going to put him on that machine for 2 to 3 days.  Then depending on how he is doing, they will put him back on his vent full time.  Give him a  couple of days on that, then slowly see if we can wing him off.  If he handles all this OK, then we can finish winging him off the vent during the day time hours here at home.  As the doctor puts it, Jordan is in then driver seat.  He is in control.  So, if he handles our plan and this gives him the time he needs to heal than we should be home in 1 to 2 weeks.  The doctor also said that what he has going on right now, will take him 4 to 6 weeks to recover.

Needless to say, I was full of tears this morning.  Knowing what the Drager was, I was so sad that he had gone down hill that much to need it.  It scared me.  I was however relieved to know that it would not be long term thing and that he didn't have to have the Drager that it was a choice to help him move along quicker to being well.   These doctors, nurses and respiratory therapists are wonderful and so amazingly smart.  They take the time to explain absolutely everything to me.  They make sure that I not only understand but are OK with the decisions they have made.  I love that they listen to me and I feel like I am part of their team in deciding what is best for my little boy.

To top it off today, Ryan left for his business trip to Albuquerque, NM and Mikey came home from school with pink eye.  The doctor called us in a prescription and didn't make us come in because of our circumstances.  Thank goodness.  A little pity was appreciated.  It puts a slight wrench in my daily plans but we have it worked out that I can still spend a good chunk of the day with Jordan.

So, now that I have had a good cry and have explained to my kids our plan of attack, we are ready to tackle the next couple of weeks that lie ahead of us.

Ryan and I call Jordan our miracle baby.  Each day he just keeps on fighting.  If it wasn't for the advancement of the medical world we wouldn't have him.  We are so thankful for the many doctors, nurses, respiratory therapists, all the specialist who took the time to understand medicine so well that they have blessed our lives.  But most importantly I am thankful for a loving Heavenly Father who has blessed me with Jordan.  I know that any time He wants to take him home He can.  But I also know that for some reason Jordan needs to be here exactly as he is.  He is perfect in my eyes and I love him dearly.  I thank the Lord daily for blessing us with him.  He has touched so many people in his short little existence.  I am honored and feel privileged to be his Mom.

Thanks again to some wonderful friends.  Angela Grossnickle, Carrie Johnson, Kim Janeway, Loretta Smith, Kaitlin Selfiason, Lorraine Janeway for watching my dear children these last 12 days.  To Tanya who has brought food to the hospital so I will eat well.  To Amy who is teaching my Boot Camp class still after all this time.  For the meals brought in by the Wilson's, Shurts, Nelson's, Templeton's, Couch's, and Wolfe's.  I hope I didn't leave anybody out.  I am so thankful for all the help and love you have shown to us.

5 Days and Counting

Wow, we have been here for 5 days with no set day to go home yet.  I am starting to feel it and so is my family.  It is wearing us down.  This hospital room is getting smaller and smaller.  Glad however to find out there is a gym here in the hospital.  How many hours and days have we hung out here and I am just finding that out???  With all the stress etc. there are many times I would have loved to go run it off.  Well, better late than never.

So Jordan is doing OK.  Yesterday and today he has been retracting quite a bit.  Basically his breathing is labored.  Even with the vent on.  They gave him some Albuterol inhaler through his trachea and it seemed to make him more wheezy.  So this morning they switched it up and started him on steroids.  I know, scary.  However it is just a 3 day dosage and that usually does more good than harm.  Its such a short dosage regimen that he shouldn't experience the side effects that normally come from taking steroids (yes many jokes come to mind but too tired to write them out:).  They also fixed some settings on the vent to help his breathing.  We have been giving Tylenol and Ibuprofen around the clock.  So, with all this going on the doctor won't think about sending him home until he reaches more of his baseline normal.  We were hoping today would run a little more smoothly so we could take him home tomorrow.  We took him off the round the clock medicine and are now giving it to him as needed.  He hasn't been spiking any more high fevers but you can tell he does not feel well and he gets sweaty and clammy feeling.  He has also thrown his food up (or reflux, not sure which) twice today in large amounts and once yesterday.  We don't know why he is starting to have trouble with his digestion.  It is a common thing while being sick but why now when he is supposed to be getting better?  He is sleeping quite a bit today and I hope his little body is getting the strength it needs.

Today I feel a little helpless.  I have hardly held him due to the nurses worried about him refluxing again.  I get it but I sure have a hard time just sitting and watching.  With the likelihood of staying into the weekend, I think I am going to make a trip home to see the rest of the family.  He is in good hands.  I just got a text from my friend Stacey and she has a meal waiting on our doorstep.  I am so thankful for all the wonderful people who don't seem to get tired of helping us.  Feeling pretty blessed.

So here are the pictures of Jordan today.  He looks better than he has:

This outfit was totaled 20 minutes later with throw up.  Darn it, he looked cute for a little bit:)

Now back to the hospital gown.

OOPS! Threw up on that too! Back to Naked!

I Love how Jordan holds on to his equipment when he sleeps.

So Sweet.

Priceless Photo's

Jordan taking his own temperature

Almost there

Just about done . . . 

Finished!  

Jordan's nurse and I got such a kick out of Jordan.  He is grabbing at absolutely everything.  I thought it was too cute when he was just holding his own thermometer in place and had to grab the camera.  Who knew he would read his own temp too!

Back Again!

I went to Utah last week for about 36 hours.  I went to help Ryan with his 15 year mission reunion he was in charge of.  I flew in Friday morning and was scheduled to fly back home Saturday morning.  I extended my stay to spend some time with my parents.  My dad fell a week ago and broke his nose and both his wrists.  He had surgery Thursday.  His surgery went well and he is doing surprisingly well.  My mom on the other hand has her work cut out for her.  Bless her heart. I am glad I have a baby to take care of, so much easier!  Anyhow, I got home Saturday night around 11, left Aaron and Tyler at their grandma's and went home to Jordan.  He had my favorite nurses taking care of him while I was gone.  I am so thankful for them.  Four hours after arriving home we were off to the hospital.

The past week Jordan's secretions have been getting worse and worse.  On top of that he had a low grade fever.  You could tell he was getting something.  I was nervous to leave but felt like things would be OK.  Jordan was in good hands with our nurses. I am thankful however that he waited for me to get home to get worse.  Small tender mercies.  We took him to the ER and they admitted us. He had a fever of 102 before we left the house.  His respiratory rate was consistently high and his heart rate was  ranging between 180 -200 which is extremely high for him.  They took an xray and some cultures.  It came back as being positive for  adenovirus and metapneumovirus.  Both I have learned are bad enough to have on their own and not so good to have them at the same time.  My kids from the sounds of it had the adenovirus and were so kind to share it with their brother.

The doctors said that more than likely it will get worse before he gets better.  However, they didn't factor in the priesthood blessing he had and all the prayers that have come his way.  Which of course I believe in and rely on so much.  He has had a good day today.  His fever is back to low grade.  His color looks great.  His heart rate is down a little but his respiratory rate is still up.  The doctor is now saying that he thinks we may be "lucky" and he may have a mild version.  So he is being watched closely.  Brooklyn was similar.  Her fever would go down and we thought she was getting better and then it would spike back up quickly.  I am hoping he does not follow her pattern. It's pretty much a waiting game at this point.

Originally I had a doctors appointment scheduled today with Jordan's ENT to trade out his Trachea. The doctor is so kind, he came over in the morning to check on Jordan and then came on his lunch break to trade out his trachea.  I have been so impressed by him and thankful for Dr. Lundenburg.  He is the one who put in his trachea.  He has taken so much time with us and explains things over and over again making sure I understand and feel good about things.  He is so kind and super smart.  When you are going through an experience like this, it is nice to have a doctor like him.

Anyhow, Jordan got a different type of trachea last time we were in the hospital called a cuffed trachea.  It has a little knob where the cuff portion is and we had trouble getting it in and it was a painful process for him.  Normally we would trade out his trachea at home each month but with what happened last month the doctor wanted to do his next change in case there would be bleeding.  Which there was.  However being at the hospital they were able to sedate him through his IV and give him pain medication as well.  The process went so much smoother this round, thank heavens!  Another tender mercy.  Glad we were here for it.

Jordan hadn't slept most the morning so he made up for it in the afternoon.  I took advantage and left for a bit and surprised my other kids when they got home for school.  They definitely were surprised and glad I was at home.  My sweet friend Angela took Aaron all day and my other sweet friend Roxy brought us over dinner which was so nice not to have to worry about fixing.  I know I have mentioned it before, but we are so thankful for great friends and neighbors who have taken such good care of us through this process.  They seem to never tire of our neediness.

When I came back tonight, Jordan is still asleep.  His fever is not up but everything else is.  I hope he has a good night.  He is a little fighter.  He also is such a good patient.  He does not fuss much and he manages to pull out a smile here and there for the nurses.  He has them wrapped around his finger.  He can be a real charmer.  Love that kid!

I have taken pictures with my IPad, but I can't figure out how to get them to my computer.  I did however post a picture on face book if you are interested.   Thanks again for caring about my dear Jordan.

Good night.