It's all a matter of perspective
The orthotist came by this afternoon to put Jack's body brace on him. He molded Jack in the operating room right after the surgery. He told me he thought the degree of correction was "amazing". I guess it's all a matter of perspective. I have a tendency to expect perfection. One of Jack's doctor's once told me that I needed to "temper my expectations". Unfortunately, I'm just not willing to do that. However, in this case, it was good to get the perspective of a knowledgeable and unbiased individual. I'm going to take his observation and run with it.
I was talked to by a very condescending individual from the pain management team this afternoon. And I mean talked "to". He spent a great deal of energy making sure I knew that he knew what he was doing. He also told me that he would take his cues from me regarding increasing Jack's pain meds, all the while not listening to a damn thing I had to say. He didn't really bother me because I'm comfortable with my knowledge and I'm comfortable with what I was asking for and, most importantly, Jack was much more comfortable today. Hopefully, there won't be any need to make any changes to his pain meds at this point.
The orthopedic resident whispered in my ear that they hope to keep us in the PICU for as long as possible and the PICU people are telling me Jack might move to the floor tomorrow. I'm hoping the orthopedic guys trump the PICU guys because I need to be able to leave Jack's room from time to time and know he will be alive when I return. Once he's on the floor, I'm a prisoner of his hospital room.
I decided I'd post a picture of Jack so that you all could see him for yourself. His eyes are still so swollen he can barely open them. I'm not sure when he will be back to looking like himself, but hopefully, very soon.
Thanks again for all your comments, they make my day!
24 comments:
What an insensitive twit. Like YOU need to be talked "to". Ann, you suction your son at home?? Really? Ok, I'll stop the sarcasm. I hope that all important smile returns quickly. I can't wait to see his smiling face myself. Keep reining those twits in. Love, Whitney
Hi, Ann. We have been out of town, but I have been thinking about you. Hang in there. Poor little Jack! I hated to read your description of the surgery and I know you hated to hear it yourself. Please keep us updated.
Love, Barb
Hi Ann,
Thinking about you all and glad to hear Jack is more comfortable. Love the 'do you suction him at home' comment,we have had that too!
Hope you are managing to get some rest and are feeling ok.
You are all in our prayers.
Lots of love
Bea and Katie xxxx
Ann, I too hope you are getting some rest. I'm glad that Jack is doing well. I hope he isn't in much pain and that your stay goes smoothly. You will be in my thoughts and prayers..
Linda C.
Well, I think the pain team person has no idea that he is being observed by many people, not just you and Jack. He must be young or at least not very confident in his own skills if he has to talk down to the people he is working with! Okay, I'll stop.
We love you and we know you are staying on top of everything with Jack! We KNOW he appreciates it!
Poor baby Jack!!
Love you two!
Poor Jack...his face is so swollen! I just want to come there and love him!
Dang doctors...sometimes they are so stupid. Thankfully you know exatly what you want...and arent afraid to ask for it!
I am so excited to see how much they were able to correct his back! (Yes, that's the PT in me!!) I know you expect perfection..and you have that right! But this surgery will give him stability and strength...and as you said before a better quality of life, regardless of how close to perfect it is!
Lots of love and prayers...give that swollen face a little love from me! And give the drs heck!
Karen Hatch
Ann - I'm glad that you the surgery is behind you and Jack can be on his way to recovery. I will hope and pray tonight that you guys can stay in the PICU for as long as possible so you can get a break here and there. You guys are always in my thoughts. And... I CANNOT believe that a respitory therapist asked you that. That makes my stomach HURT. Where do these people get their license?
HUGS,
Carrie Stockmal
Poor little guy!! I really hope that you get to feeling better real soon!!! Love and Kisses to you!! Take Care of that Mama of yours, don't let her get into too much trouble OK??!!!
Hugs for you both!!
Love Kris
I'm so glad you have this blog, Ann!
I love the pic of Jack, he seems so peaceful. Now I feel better.
Ahhh :-)
Indie and I have been thinking about you both as well as your whole family. Ann you continue to be a pillar of strength (like I expected anything else). Jack, get well soon so you can come home and enjoy your summer.
Love Kelly and Indie
Ann, I am comforted to see that Jack is looking pretty good, even though he is swollen and tolerating so much. Peaceful. He must be feeling our prayers.
As for the ^&$@()#)!! hospital personnel, well, you know...choose your battles because it can be emotionally and physically exhausting. I know you know how to determine that! LOL I hope you all can wiggle your way to stay in the PICU as long as you can. Sleep is so important. Although, I must say I didn't do much of that myself when Marisa had her LTP :-)
Hugs to you...hang in there...and congrats on the great news on the correction! Michelle
Ann, I'm praying for you and Jack here...I hope he's feeling ok, that pain management gets way better, and his smile returns soon!
And I was floored to read that an RT asked you if you suction at home...If not you, WHO??? Geeze - the questions people ask!
Love to you and Jack and the rest of the kids too!
Erika (Vivian's mom from the trach boards)
That is why I hate hosptials, love the "do you suction at home" I get that all the time to. No I just let my kid drown. LOL. I know exactly what you mean about being a prisoner in the room once on the floor. I hope you get a few extra days in PICU. He may look swollen but that picture is still very sweet. Makes me want to reach through the computer and hug him. Poor sweetie. I will keep praying and I know he will be feeling better soon and ready to come home.
Ann and Jack,
sorry Im so late checking in, been putting out small fires on the homefront. You two have been in my thoughts and prayers all week. I cant imagine being in your place right now. Big hugs Deb McKAughan
Ann and Jack
Poor Jack, he looks so swollen. Hope they can keep in the PICU you need to get a break Ann.
Prayed for Jack in church this morning.
Lots of love
Julie
Ann, glad you posted a photo. I've seen Jack looking better, but judging from this photo, considering how bad his scoliosis was, I would agree that his alignment is amazing! Hopefully, this correction will improve his quality of life in many ways:-)
Push to keep Jack in the PICU, but if that is not possible, ask them if they have a step-down unit. Many hospitals do and the care tends to be much better than the typical pediatric floor.
With you in spirit, {{{HUGS}}} Cindy
Hi Anne,
Thanks for posting the picture.He sure looks swollen, but as you said it's all a matter of perspective, I think he looks pretty good. I hope you get to stay in the PICU, I know that makes all the difference. Take care of yourself, stay on those boobs, they just don't know who they are dealing with. Hang on to what the orthotist said, an "amazing" correction will make such a difference for Jack.
Lots of love and prayers,
Kathy
Hi Ann & Jack,
Please know that Jacob and I have been thinking about and praying for you these past few days. I know you are glad the worse part is behind you, but it is still hard. Please, please, please ask if you need anything. We love you guys!
Love, Amanda & Jacob
Jack sweet Jack, you are an amazing little boy with the strength of a giant! My heart hurts that I can not be with you. Ann, if you want me to come to St. Louis to beat down anyone please let me know:) You need all your strength for Jack, it should not be wasted on the stupidity of others.
Love and Hugs
Carrie
Thanks for posting the picture of Jack. I'm sure he'll be looking like himself again soon. I hope you can continue to manage his pain well. Big prayers for a longer PICU stay! Thanks for keeping us posted. You are doing a great job!
Grace and Peace,
Kristy and Nathan
Love you Jack! You look like a million bucks considering what you've been through! We're waiting to see your smile again; rest up, feel better, help Mommy with the suctioning if she needs it.
xoxo, E, D, L & B
Damn medical people who talk down to us! Wish I was there to fight some battles for you, but I think that sometimes gives us more energy and takes our mind off the problems at hand... I know you are Jack's best advocate, and unfortunately, your being by his side is essential to his care. However, I hope you are taking care of yourself too!!!!!! When things get especially tough, remember all of the prayers around the world going out for Jack and your family... Gloria
Ann,
Jack looks so sweet! His eyes don't appear swollen to me. I'm glad to hear that one of the orthopedic feels the operation went well and I also hope they can keep Jack in PICU for awhile longer, for him and for you. Please keep updating the blog.
Martha.-
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