Saturday, June 1, 2013

Saturday Night's Update on Ryan

Ryan's O2 sats have come up a little today and we've tried weaning him a little.  We've moved him to 1 1/2 liter and he seemed to do fine.  We tried just 1 liter for a while, but he didn't seem to like that too well.  So, I suppose we'll just hover at 1 1/2 for a while.



Great Teacher

Ryan seems to be feeling better today.  One of his Respiratory Therapists, Holly, started being a little more aggressive with the IPV machine and I think it's making a difference. 

Additionally, Ryan's teacher, Mrs. V and her husband, came to the hospital to see him.  She is the best teacher ever!  We had the nicest visit with her.  I had a feeling on Friday that Ryan would really like to see her.  I'm sure I was right!
Every time she walked away from Ryan, he would call her back with this definite "Mmmm" sound.  Then she started rubbing his head, and when she'd quit, he'd wave his hand as if to say, "More!  Keep going!"  It's a good thing he's so adorable.  Otherwise, it might just seem really demanding!  :)

You know, earlier this week when I was at home with Ryan, I was really worried about him.  He was so pale white and sick.  He certainly wasn't enjoying this experience at all.  The thought occurred to me several times that Ryan might go Home this time, and that perhaps Ryan was ready to go Home.  I had lots of time to think about it as the minutes of the night passed, waiing for the next time his sats dropped too low and he needed to be repositioned.  It was a sad, and perhaps scary thought for me.  I don't think I'm ready for Ryan to leave our family, even if it's only a short time.  I felt a little overwhelmed and sad by the thought.  Okay, really saddened by the thought.

Then yesterday I went to the school to see a special activity that Deborah was doing.  As I was driving to and from the school, I listened to a talk by Mary Ellen Edmunds.  She was talking about lessons in gratitude she learned from her time in Africa.   Some of you may be familiar with the stories she told.  She was there during a time when much of the world was having a drought.  The Church of Jesus Christ of Latter Day Saints invited all of their members, worldwide, to join together in fasting for water.  This man, who did not have running water said he wished that he could send some of their water to those of us in the United States.  Isn't that amazing!  As I listened to her talk, a feeling of gratitude washed over me.  Somewhere in the world, a mom, or perhaps several moms, were losing their little ones without any preparation.  I could for a moment sense the great shock and devastation of thinking all is well and then having such horrific news.  And, in an instant, I felt such gratitude for all the moments I have.  I felt gratitude for the times when I am able to prepare myself for that eventual day when I will have to say good bye to my sweet little boy. 

I hope it will not be too soon.  I also pray that he will not linger so long on earth as to be miserable here.  My world is filled with joy and a measure of that joy comes from Ryan and all the lessons I have learned from him. Although I would be glad to serve him all the days of my life, I am truly thankful for the moments of reflection that make me appreciate each moment a little more.

Thanks for all of your prayers!

Friday, May 31, 2013

Friday's Update

No change today in Ryan's status.  He's still dropping every time his supplemental oxygen is moved down below 2 liters.  The doctor came in to visit.  He said he would have anticipated a change by now.  The 2nd set of x rays look better. He thought we should at least be able to start weaning him by now.   Additionally, the white blood cell count and the CRP was not as indicative for Pneumonia as he would have anticipated.  So, he ordered a CT Scan to see if perhaps we just have a lot of scar tissue in the lungs or something else going on in there. This may just be the unknown chronic Ryan disease or another chronic disease.  Also, apparently something happened and they need to redo the viral panel. He also increased the frequency of the IPV treatments to every 3 hours.  Ryan is not going to be thrilled about that.


Thursday, May 30, 2013

Visit from the Doctor

I spoke with the doctor today.  We reviewed the possible causes:  bacterial pneumonia, viral pneumonia, or other respiratory infection.  The chest x rays and the blood work support the early stages of pneumonia.

He said to anticipate the hospital stay will be 4-5 days.  Oh, boy. 

Ryan's May Hospital Visit

Ryan was unable to maintain his oxygen saturation levels above even 90% at home on 2 liters of oxygen; he was pale white, cold, and his lips and nail beds were greyish blue.  Not a good thing.  Wednesday afternoon, after talking with the Pulmonologist, we transferred him to a portable oxygen machine, loaded up a bunch of machines, and took him to the ER.  By the time we arrived at the ER, he had pinked up a little and was hovering right around the 92% area with oxygen.

Their was a line at the ER; however, we were moved to the front of the line.  I suppose that's one advantage to walking in to an ER with a child already on oxygen and lying across your arms:  you certainly never have to wait in an ER.

The ER doc ordered blood work, a chest x ray, and a viral panel.  Then we waited in the ER exam room for what seemed like an eternity, but in reality was only close ... we checked in sometime around 7:30 pm and was moved to our hospital room around 1: 30 am Thursday morning.  I was so tired from the two sleepless nights before that when George was asking me Ryan's history questions, I kept falling asleep.  I felt bad, but at 2:30 am on a good night I might fall asleep on you.  At 2:30 am after not sleeping much for two consecutive nights, and knowing that I now have a medical staff to watch over Ryan, I think my body was just shutting down.

Ryan was placed on the step down unit from the ICU where he can be monitored closely.  He is listed as "guarded" condition, which here is between stable and critical.  We are doing IPV treatments every 4 hours, some new meds, and of course his normal meds.  The little guys is exhausted.  He is still requiring 2 liters of oxygen just to keep his saturation levels at 92-93% and he's still have frequent dips into the 80's. 

Wednesday, May 29, 2013

An Update on Ryan

Last Friday we had a visit with a new Pulmonologist. We were referred to him when Ryan was hospitalized about a month ago. Ryan seems to have a pattern of going to the hospital every spring for respiratory issues.  We were hoping to avoid future hospital visits by doing some preventative treatments at home.  But, it wasn't to be.

Friday morning, Ryan felt just a touch warmer than usual and even looked a little flushed, even the new doctor noticed it.  However, we went to our appointment and received a great treatment plan.  We were to start doing a new medicine with an inhaler and a spacer every morning.



 (I must admit that I'm disappointed that Ryan's is just yellow.  He is lacking the adorable dog face. )

He also gave us a treatment sheet with options for when Ryan wasn't feeling good:  nebulizer treatments and steroids.  Over the weekend, Ryan was not feeling well:  low grade fever, lethargic and a little bit of a cough.

Sunday night,  his fever spiked to 104.8, but it came down with the typical treatments.  On Monday, he seemed completely well, which was a huge blessing because we had lots we had to get done that day.  Then just as I finished all that I needed it seemed to do, he started running a fever again.  By Tuesday morning, he was obviously having a lot of respiratory distress so I did as I had been instructed and called the Pulmonologist.  After describing that he had been struggling all weekend, they wanted to see him soon. 

At the doctor's office they were very worried about his low oxygen levels.  They gave him a breathing treatment and a dose of steroids.  The Dr. then made out a new more aggressive treatment plan, which included our newest toy:  an IPV machine. 


I've now started calling the IPV machine, the green beast.  In addition to it's lovely retro feel, it then has a bunch of stuff that hooks up to it.  At one end is a little mask, that goes over Ryan's nose and mouth.  It then pushes air into his lungs and nebulizes at the same time.  I have a lot to learn about this new machine. What I do know is that Ryan does not enjoy his treatment time, and it's going to be tough to do this 3 times per day when he's well.

A Respiratory Therapist brought the IPV machine to the house late Tuesday afternoon.  I had an evening nurse there that night, but Ryan was so sick by night that I didn't really want to leave him.  We got through the evening, but night time was really tough.

Ryan's oxygen levels were dipping into the low 70's.  Remember they need to be above 92 to stay off oxygen, and his baseline is 97 or higher.  All night long, I had to keep repositioning him and waking him to get his O2 levels back up.  Wednesday morning came and I turned his care over to the daytime nurse.  I had to go to a quick meeting, but while I was away I checked in on Ryan to see how he's doing. The nurse seemed to indicate that his day hadn't been normal, but it was good.

With that report, I was a bit surprised to find Ryan looking very pale and still having a lot of breathing issues.  With 2 liters of supplemental oxygen, he should be able to function at, or at least very near, 92.  I was relieved to think that the Respiratory Therapist (RT) was coming to the house.  I thought she'd definitely be able to show us all that her plants are doing.

When the RT arrived, she didn't say much about Ryan's appearance, but got busy quickly.  She tried to give an IPV treatment, but his O2 levels kept slipping down hill. She finally suggested that it was time to call Dr. Smith. When we called Dr. Smith, he said it was time to meet him at the hospital.


Monday, May 27, 2013

The Movie

video

My husband and the kids put this together about 8 years ago.