Yesterday was rough. Billy was up at who knows what time, probably around 5am. He and his son left at 6am to be at the hospital by 7am. I got up in time to see them off. Then got Aaron off to work and drove to the hospital…got lost, then found (long story!)…but finally made it up there around 10 am to wait with Billy and his mom. The surgery started around 9:35, they expected it to last around 4 hours. We got updates from the boy’s mom, who was waiting in the Ped surgical waiting room. Finally, after only 3 ½ hours, we got word he was done and going straight to PICU. The surgeon wanted to keep him intebated overnight, but we could go and see him.
Only two people at a time could go in to the PICU, so of course Billy and Misty went in first. I waited outside for a bit, and when they came out both were visibly upset. My heart sank, expecting the worst. Misty walked over to where her friend was sitting, my eyes where only for Billy. He sat down next to me, his eyes red, unable to speak for a minute. Finally he said, “I wasn’t prepared for this”. All I could do was hold him.
The surgery had gone well, but the device they put on him was…well, drastic looking to say the least. That combined with the fact that he hadn’t been cleaned up yet, and had a lot of swelling…
A little while later they were called back in for a consultation. I was told I could go back after he was cleaned up, and they had spoken to the doctor. Misty emphasized to me that he looked bad “really, really bad”. All I could do was nod my head in understanding. I empathized with her, as a mother. She came back out and told me I could go back, she was still upset and I hugged her. She explained a little about what they had done, reminded me to wash my hands before going into his room, and left to go home and get some rest. It had been a long day for her.
I walked back, not able to see into the room yet, and washed my hands. His room was next to the wash stand, so when I was done I looked over, finally able to see him. I caught my breath and leaned against the sink for a minute, unable to go in just yet. Yea…it was bad, but not as much as I first expected. Again, that little bit of detachment helps. Just a little.
I walked into the room, Billy was standing on the other side of the bed. I knew what he was thinking…what was he going to tell his son when he woke up and asked “how do I look?” Tears threatened again, my heart was breaking both for Billy and for his son. I kept reminded myself, this is only temporary.
I looked down at him, really looked. I noticed a difference, a big difference, for the first time. His face was more rounded, more “normal” than before. I felt encouraged by that, but still…this is a 15 year old boy. Will he get that?
Throughout this whole thing, I vowed to myself that I would be there, both for Billy and for Bryson. The only thing I can do is support them both as much as I’m able. I’ve never been thru this before…the worst thing my own son went thru since he was a newborn was having his appendix out 3 years ago. They’ve been doing this for 15 years. I want to help, but don’t know what to do except just be there and not be in the way.
Anyway, thank you to everyone for all your thoughts and prayers. Like Billy said in his last blog, except for Grandparents, visitors are discouraged unless specifically invited by either Billy or his son. We appreciate your understanding on that.
Copy & paste to friend: (Click inside box; Ctrl + C to copy; Ctrl + V to paste)
|
|
read more blogs!
|
SxzeNewMe
|
Jun 26 @ 9:00AM
|
|
Jeanie...please hug Billy for me!!! And then...damn...have your son hug you for me; I'll pay him back whenever I get there. :)
I have no idea what it's like for Billy and Misty, much less for the kid (not be disrespectful - just not trying to say his name)...but I do know from the many surgeries my brother had on his face that it is often worse than it looks - well, and from surgeries (in general) that I've had, too. Post-op is always the worst! I'm sure he will be fine - and I know that Billy and Misty are doing all they can for him...
And you seem to be doing fine in being that support-person, hon... You're not supposed to do anything but wait until you're needed. In fact, your presence may be doing far more than any "tangible" action (is there such a thing???), and when more is needed they will either tell you or you'll just know. You're a mom and you love them - very little you could ever do in the name of help truly be wrong.
I'm really very proud of all of you!!!
Hugs to you, sweetie. My love to you all!!! 
|
|
wtxman
|
Jun 26 @ 9:01AM
|
|
|
My prayers are for a speedy recover.
|
|
SxzeNewMe
|
Jun 26 @ 9:02AM
|
|
Oh shit...and I forgot to say, I'm thinking about the kiddo, too - I'm so glad he seems to be doing okay so far!!! The next time someone hugs him, let part of it be from me. Please!!!
|
|
SxzeNewMe
|
Jun 26 @ 9:06AM
|
|
And this is for him!!!
|
|
alybai42
|
Jun 26 @ 9:08AM
|
|
My thoughts are with all of you at this time.. 
|
|
Wordsofwit
|
Jun 26 @ 9:41AM
|
|
This is all good news and he the recovery over the summer will make it easier on him than if it was during the school year. I did not understand his condition so I looked it up on the Web and the link below explains it.
http://www.faces-cranio.org/Disord/Pfeiffer.htm
|
|
sundance64
|
Jun 26 @ 9:51AM
|
|
|
Bruce, that explains it somewhat...although some of it seems to be a little outdated. But yea it does tell in general what the condition involves.
|
|
zena343
|
Jun 26 @ 9:53AM
|
|
My thoughts and prayers are with you all.. sorry I must have missed one giant gap here I had no idea. Being a mom I can't imagine my child going through this, it truely does pull at the heartstrings! Take care all of you and I hope he has a speedy recovery!
Take care 
|
|
Sunshine79
|
Jun 26 @ 10:16AM
|
|
Well, the worst of it is over and it went well. Now onto a road of tough recovery. I know with the right support, he'll do just fine!! 
|
|
sundance64
|
Jun 26 @ 11:09AM
|
|
I want to apologize in advance if my replies to comments or emails seem short. I'm exhausted, tense and mostly unable to answer alot of the questions. Again, my first and only priority is Billy and his son.
Thank you Bruce for posting the link. It does give some general info on Pfieffer's syndrome, so if anyone is curious go check it out.
|
|
SxzeNewMe
|
Jun 26 @ 11:20AM
|
|
If you apologize for making your family a priority one more time...well, I'd say I'd spank you but you'd probably like that!
Go take care of your people...we all understand...I'm sorry I'm not there to support YOU!
|
|
str8ngr84u2
|
Jun 26 @ 11:43AM
|
|
|
Once again, I am behind in the scene. My prayers are out for a speedy recovery.
|
|
girlcountry
|
Jun 26 @ 3:03PM
|
|
|
Hugs to all of you and my prayers are still with you!!
|
|
borty293
|
Jun 26 @ 4:44PM
|
|
|
My thoughts and prayers are with you and your family and I mean that sincerely.
|
|
sundance64
|
Jun 26 @ 6:00PM
|
|
Just wanted to let everyone know, Canu's son is off the breathing tube, but will be in PICU one more night before being moved to a Ped ward. He's alot more alert today (compared to yesterday which was basically unconcious) and in very little pain. The swelling has gone down some too, and his surgeon has adjusted his device to make eating and talking a little easier.
He has a long way to go, but it's a start.
|
|
SxzeNewMe
|
Jun 26 @ 6:46PM
|
|
Good to hear he's breathing on his own now...that's one of the scary humps to get over. (I find myself taking deep breaths thinking about that...) And...he's eating already??? That sounds really good, even if it's just a clear diet...it does sound like things are progressing well already!
Thanks again for the update, hon. I hope you're taking care of you, too...
|
|
sundance64
|
Jun 26 @ 6:52PM
|
|
|
Not eating yet...maybe tomorrow on clear liquids. I asked him today if he was hungry yet...he shook his head no. Part of that too is the sedative...it may make him a little nauseous...but he's not being sedated anymore so his appetite may improve by tomorrow.
|
|
SxzeNewMe
|
Jun 26 @ 8:02PM
|
|
You know, I'm thinking about him - remembering him and how he's more a young man than a child, yet he's on Pediatrics...and he is still a kid.
I'll be sure Megan reads this when she gets home!
|
|
belle1010
|
Jun 26 @ 9:28PM
|
|
Hello my friend,
Just know i'm thinking about you, Billy, and Bryson. I love you all, and wish for a speedy recovery!
|
|
l00kin4myprince
|
Jun 26 @ 9:30PM
|
|
THAT'S MY BOY!!!!!! Bryson is the best, will always be the best, no one can touch this one! He's so sweet, kind and funny as hell! No matter what he has gone through he still remains to have a beautiful personality and sense of humor! (Princess chanting) Go Bryson, Go Bryson!!!!  Bryson! Bryson! Bryson! I love you!!!!
|
|
DesertSmile
|
Jun 26 @ 9:48PM
|
|
|
Offering the best of thoughts to the family during this time. No sense telling everyone to rest...it won't come till all is well.
|
|
StraddleMyNose
|
Jun 27 @ 1:53AM
|
|
|
Thoughts and prayers continue....
|
|
SxzeNewMe
|
Jun 27 @ 8:48AM
|
|
GOOD MORNING!!!
I hope today is a good day for you all!
Hugs,
Nomi
|
|
hornytoad55
|
Jun 27 @ 2:12PM
|
|
Jeanie and Bills my prayers and thoughts are with you three and hopes for a speedy recovery. Good luck my friends and with Billy's son.
Ken
|
|
|