Friday, May 8, 2009

Another Day

Since our last entry, we have been on a roller coaster. We have had some very good and hopeful times, and then times when we have been very concerned about the course he is on. After our last entry, we were up much of the night because Ryan was very restless and agitated. He did have to be placed on C-Pap (pressure to keep his lungs open, but not the ventilator). He was on the C-Pap beginning around 3 am and finally was able to settle down and rest. Which meant we finally were able to try and rest as well. The morning came early though, and when we saw him again, he was still resting, thankfully.

We did attempt a blood draw for the genetic testing that Dr. Mantovani did and were unsuccessful. Because the tests will not provide any information that can change his disease process now, we are declining any further blood draws for this. If he should need a blood count test, or any information requiring a blood test for his respiratory status, we are permitting that.

As the day went on yesterday, we were approached about taking complimentary pictures with Ryan taken by a professional photographer. We were able to do that yesterday through the company nowilaymedowntosleep.org We removed as many wires and tubes as possible and the ones that had to be left in will be photo-shopped out of the pictures. The best part is that he was awake and alert. The sun was shining into his window and he was ready for his close-up.

We were able to leave the C-Pap off at that time and return back to the high humidity nasal prongs with flow of oxygen and he did well most of the rest of the day. As the evening approached, Ryan became restless and for his comfort and ease to breath, we decided to place him back on C-Pap so he could rest easier at night. As I said, when he rests, we are able to rest. Otherwise, it is very difficult to take care of ourselves at all when we feel he is uneasy. He was on C-Pap all night and we were told he had a good night.

This morning, he began to develop a fever and at first was only 100.8 He had had a low grade temperature since we came to the hospital on Monday, but later this morning, it spiked to 102.8 and he was given tyelnol for that. It is very hard to see him have to work so hard to breath, especially with the fever and his status became very concerning very quickly. As they rounded on Ryan this morning, a chest x-ray was ordered, and there are blood cultures pending that were ordered after his slight fever following intubation on Tues. The chest x-ray did not show any fluid in his lungs, which would be a sign of a lung infection. I asked the Dr. what is causing the fever, and he did not know. If they can determine the source of the fever, we will be treating him with antibiotics.

Because he is now "sick" we need to provide him with as much rest as possible so that his body can focus on getting better. It is very important that he sleeps and rests well.

Chris & Jenn

10 comments:

Anonymous said...

Just want to let you know that there are several of us in the DAP Building(at Tri-Ko)watching and praying for Ryan. Let Valorie know that we all send hugs.

Carol

Rebecca Lemasters said...

Still praying and thinking of you. Love-Becky and Brad

The Smith Family said...

Jenn,
Thank you for leaving the update on your blog. Your strength continues to amaze me. We are continuing to pray for you and Ryan here...for your continued strength and faith and for Ryan's comfort.
Please let us know if we can do anything for you or your family.

Justin, Amber & Nathaniel

Laura and Brad Powers said...

Just wanted to let you know that we are praying for your family every day. http://www.nowilaymedowntosleep.org is an amazing organization. Last year they took pictures of my brother's little angel, Sydney. Please let us know if there is anything we can do.

Laura & Brad Powers

dickinsonfamily said...

Love and prayers being sent your way.
-Mike, Sarah, & Natalie

Anonymous said...

Jenn and Chris,
I continue to pray for you all. Thank you so much for continuing to keep all of us updated. Your strength and grace at such a difficult time is amazing and you are such an example to us all.
Love,
Kelly

The Stepps said...

Please know that Mike and I are praying for you all today and always and that not a moment goes by that we aren't here to support you in whatever you may need, I will see you tomorrow....Mike and Amy Stepp

Zehr_Family said...

Just want you both to know that I posted a prayer request on my facebook account. I only listed it as please pray for Baby Ryan and his family with just basic info that he is very sick. I am praying for you all and now many others are as well. Just keep your focus on Ryan and on God, you are all in His hands!

Kristi Zehr

Anonymous said...

Not a minute goes by that you all are not in my thoughts. Thank you for thinking of us by keeping us up to date on your sweet baby Ryan. Love Karen Graham

Ruth said...

Our thoughts and prayers are with you.

Ruth Bixler and family
Virgil