Riley's Diagnosis

Riley James Faiai is my 2 year old son who was born with Craniosynostosis and probable Pfeiffer syndrome. When he was 5 months old, Riley had surgery to reconstruct his skull. This blog is the journal, story, and timeline that has helped me put Riley's Journey into words. Browse around the archives and feel free to contact me for more info or support! -Lauren (lfaiai@gmail.com)

Friday, January 05, 2007

Post Op Update 1/5/07 9:50AM

Sweet Riley doesn't look much different from yesterday. Maybe a little more swelling, which was predicted by the doctors. They upped his dosage of morphine this morning because his heart rate has been very high ever since he's been in ICU and hasn't gone down at all. The doctor thinks that even though he's doing ok with the dosage of morphine he's on now, and doesn't seem to be in screaming pain all the time, he still is dealing with a lot of pain which is making his heart race. His heart rate is supposed to be at 120bpm and it hasn't gone below 170 since he's been in ICU. When he cries it sky rockets all the way to 230 or so.

Yesterday, the doctor asked that I try and hold him and burp him, because he has so much gas build up in his tummy from crying. So at about midnight, I lifted him out of his bed really carefully (he screamed BLOODY MURDER!!) and calmed him down by holding him close to me. It felt sooooo good to be able to hold him and reassure him that I was there. And that we were doing everything we could to make him feel better. When he finally calmed down in my arms, I got really close to his face and started talking to him and telling him how much I love him. Even though his eyes were swollen shut, I could tell he was awake, because he was trying to put his hands in his mouth and he was moving his feet and legs a little bit. As I was talking softly to him and calling his name, I saw his sweet little eyelashes move ever so slightly, trying SOOO hard to open his eyes to see me. I kept talking to him as if to encourage him to open his eyes, he kept trying, but just couldn't. As two little tears ran down from each of his eyes, I... lost it. He didn't scream or holler. I think he knew he'd hurt too much if he screamed and got upset. Those two little tears were sweet gifts from God last night as my boy tried so hard to see his mommy. I held him a bit longer, and then put him back on his bed. This morning I asked the doctor how long it would be until he could open his eyes. He said probably another day or two, and that today would be the day he would swell the most. We actually just found out that Riley will need another blood transfusion today because of all the blood he's losing from the incision. It was supposed to stop bleeding yesterday, but it still hasn't. This isn't as surprise. We knew he might need another unit of blood.

I actually got some sleep last night. Riley's nurse came and checked on him every 10 minutes or so, and told me to sleep and that she'd wake me up if something happens. So I slept there next to him on the fold out chair for about 5 hours, waking up about every 45minutes to check on him. So, I feel much more rested this morning.

I'll update again tonight. Here are some pictures from last night and this morning.






Keep praying. Thanks for checkin' in.

8 comments:

TK said...

I'll be praying for a day of much less pain for him and that heart rate to come down.

It was so good to see him yesterday. Is that a full diaper I see in the first picture?

Anonymous said...

Lauren,
You are so courageous! We will pray harder that the pain gets under control for him. Such a hard trial for such a wee baby and young mother & father. You all humble me to my petty problems. Stay the course, God is at the wheel, this too shall pass.
Love you guys...
Aunt Artie

Anonymous said...

Lauren and Steve - I can't even imagine how hard that has to be to see your baby boy in so much pain. ALL of us in your community are lifting Riley up and that the Lord would be gracious and completely free him from all that pain and reduce his heart rate to the normal range.

We appreciate your updates...it helps us know the direction our prayers need to be.

In His Grip,
Fran and family

Kara said...

Dear lauren
We have been praying.
I am giad that his
haed is beder.I hope to see
you soon.Happy new year.

from haley

Kara said...

Lauren,
Ella would like to know what the red thing on his big toe is? I was trying to guess but she wasn't satisfied with the answers I was giving. She is also very excited that he gets different Sesame Street diapers each day.

Anonymous said...

Lauren and Steve,
Thank you for sending updates! I'm so amazed at your courage and strength. I keep thinking about how many people's lives you are touching just by your attitude and love for God. May many many people come to know the Father through this very difficult situation! We will continue to pray for Riley and for you both too! Love and prayers,
The Laurion's

Unknown said...

Lauren: We love you guys so much and Riley never leaves our thoughts.
Troy

Anonymous said...

We checked in this morning and both cried as we read your update. We are standing with you and praying for a smooth and successful recovery. Hang in there, you are not alone.

Love
Eric and Debbie