Friday, March 29, 2013

Ryan Today 3/29/13....

Here we are today...
I am missing my home, my other two boys, and my husband.  I am fearful to go home too soon from here like we did last week, but I am ready!  
Taking a break from the bipap

Ryan is still having trouble breathing.  He is not able to bee off of his bipap for very long before we see him start to have labored breathing.  His secretions are still very thick and are not breaking up as quickly as they normally do.  This really isn't the quick recovery we normally see when he is sick and in the hospital.  Usually he bounces back very close to his normal in just 3 days or so and we are taking him home without oxygen and mostly back to his baseline of what we see at home.  
This time...we are going home on the bipap.  He is normally on the bipap at night for sleep obstructive apnea with a little bit of oxygen bled in but never has he been on it all day.  He NEEDS it now and that scares me.  The doctor seems to think that he will make a full recovery and eventually get back to his baseline.
I have been taking handfulls of vitamins every morning to try to stay well!!  Being tired and worn out physically and mentally can make you sick so hopefully my trusty vitamins will keep me well so I can take care of Ryan!

Since this weekend is a holiday, the hospital always does very special things for the children.  Ryan has so far received THREE easter baskets/gifts!  They told me that people are going to be coming in all day bringing gifts.  It is so sweet that they do this for the children and they make me all weepy when they come in here giving him things.  Ryan also had a professional picture with the Easter bunny today (I forgot to take one with my phone) which was also so sweet!  He is sleeping through most of this but he did wake up while the Easter bunny was in here and looked at Him.

Ryan slept ALL day yesterday!  He woke up to see a movie on his iPad for about two hours and also got a bath (he was starting to get stinky!).  He seems like he is also going to sleep for most of the day today as well.  
Taking a break from bipap and watching a movie on his iPad after his bath

One of the hardest things for me being here is having to eat hospital food and not getting any kind of physical activity.  I also have to share a bathroom/shower with all of the other families in the ICU.
This is one of the better meals that I received...

I found this yummy stuff in the Cafeteria, but It wasn't cheap!
Ryan was able to sit up some this morning in a special seat to get him up a little and off of his back....

The doctor popped his head in for a second (a doctor that we know and love from being here so many times in the past) and told me that Dr Tamez (lung Dr) said that he could go home today if we want to but he didn't realize that Ryan was still needing his bipap so much.  We don't have a portable bipap to get him home on either.  So for now the plans are up in the air for going home.  They may be able to call his supplier and get him a different bipap for home use that will be more portable so that we have that option if we need it.  It is called a Trilogy and will be more like a bipap run on a ventilator.  Sound scary but not much different than what he has now.  I will update again after speaking to the Doctor.

Thanks for your continued prayers!



  1. Many prayers for your sweet boy, and that he will be well very soon.. And hugs to you too, mama.. <3

    1. Thank you so much, Bridget! I really appreciate that! We are finally seeing improvements in him and hope to be going home very soon!

  2. Poor bubs, I just want to hold him in my arms, he is so sweet. I hope you get to go home soon, and continued prayers for a quick recovery and a momma that gets to be with the rest of her family soon! *hugs*

    1. Thanks, Michelle! I will be so glad to be home in our own beds! My whole body is aching!! Thanks for the prayers!!

  3. Julia, I hope you get home soon. Try to get a wee bit of rest for yourself so you are also not sick to look after everyone. Hugs and blessings

    1. Thanks Cindy! I rest here in the room here and there but he is getting treatments around the clock and it seems like someone is always in his room doing something! I actually sleep pretty well at night. Thank you for your continued prayers!

  4. Good for you eating as well as you can and taking your vitamins! I can only imagine how super hard it'd be being away from home and staying on track. I'm praying for your sweet Ryan. I was telling my boys (Ryder-5 and Bryce-3) about Ryan and showed them his pictures. We are praying for him! Hope you guys can go home soon. Have a Happy Easter, Julia!

    1. Awe! Thanks, Kat! That is so sweet! I loved that you showed Ryan to your boys and told them about him. A lot of people in this world are scared of children like Ryan who are different and I appreciate you teaching your kids otherwise! Thanks for the prayers and I hope you and your family has a happy Easter Too!! Julia


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