Saturday, July 29, 2006

Hanging in There

I left the hospital at midnight so that I could catch a few hours of sleep. When I left, Jack was doing ok ... not great, but ok. As many of you who are reading this know, when you have a child who requires 100% assistance with every aspect of his life, it is very difficult to watch other people manage your child's care. Even though they may be doing it well, they aren't doing it your way. I am literally sitting on my hands to keep myself from pushing everyone out of the way and just doing it myself. I actually had a respiratory therapist ask me if I suctioned Jack at home. *Sigh*

Pain control is an issue I'm not completely happy with. He is getting continuous morphine through his IV and he also has a pump that allows him to be given a bolus of morphine every 20 minutes. They are waiting for my non-verbal child, who can barely move a muscle, to "tell" them he is in pain. I think it's safe to assume that he is. When I left last night, I asked them to please just assume he is in pain and give him the extra morphine every 20 minutes. It didn't happen. Another *Sigh*. All I can do is just keep asking. It's not so bad that I need to pull a Shirley MacLaine "Terms of Endearment" moment.

As far as what they accomplished during those 9 1/2 hours, Jack has 34 screws supporting his spine, along with the two rods - one on each side of his spinal chord. The screws start at T-2 and go all the way down to his sacrum. Picture a 17 rung ladder in his back and you've got a fairly accurate visual. The orthopedic surgeon came out with before and after x-rays. Jack is definately straighter, but far from straight. The surgeon could sense my disappointment with the degree of correction and went on to explain that Jack's bones are like mush and he couldn't put any more tension on the screws to make him straighter because the screws were sheering through the bone. Ugh! As he said, you have to work with what you are given. I'm confident that the amount of correction he was able to accomplish will make a significant difference in Jack's quality of life.

Thanks for checking in. Jack is awake and his eyes are calling me.


Anonymous said...

I'm so sorry that Jack is in pain. It just isn't fair. I hope he improves quickly and you are getting a little rest.

Hugs, Sandra

Anonymous said...

I'm sorry jack is pain too. Let him know we're thinking about him and praying for a speedy recovery.


Melisande said...

Our thoughts and love continue to flow Jack's way. Good that you got a little rest. It's hard to watch our kids go through all this and hope that they do benefit. You've made the best and most difficult decision in the best interest of Jack, which is not always easy to do, huh? You feel his pain because he is your baby. He also feels you love too. {hugs} Thanks for keeping us posted because I know we all are worried too!

Julie Worthington said...

Give Jack a huge hug and kiss from us. I am so sorry that he is having to experience such pain. I guess you'll just have to keep nagging them to give him the morphine. Poor Jack and poor Ann, I hope he is feeling more comfortable soon.

Love Julie and Sam xxxx

Anonymous said...

We feel your pain too - not like you as Jack's mother does but our hearts go out to you and Mark and Jack. Please know that all the love and prayers for Jack will help in the mending process and you made the right decision. Also know that Amy and I will do anything we can to help you while you two are here. Just say the word.

Dave and Amy and girls

Lora G. said...

We are still sending good thoughts and prayers your way. I hope Jack's pain management is under control before you have to pull out the "Shirley" on them. I hope both you and Jack get some rest very soon.

Anonymous said...

I have been thinking of you guys often and also praying. I hope you can keep Jack's pain down low to none-poor guy. Take care and know that we are all pulling for you guys!
Katie and Mitchell
(trach board)

Anonymous said...

Hang in there, Ann. We're thinking of you!



Kerry said...

I just love you guys and am praying so hard for Jack to be comfortable, and for you to find some peace in knowing that Jack's quality of life will be improved through this ordeal.

Love Kerry

Anonymous said...

Hugs for you both. It must be so hard to watch him. Hopefully each day will be a little better than the one before. My thoughts and prayers are with all of you.
Kathy Hawley

Anonymous said...

We are sending prayers of support and comfort to you and Jack. I hope they are able to better manage his pain. Take care of yourself.
Grace and Peace,
Kristy & Nathan

carrie said...

Jack is such an amazing little boy, please let him know how many of us love him. I hope his day is more comfortable.
Lots of Love

Anonymous said...

Ann, I am glad you are confident this will improve Jack's quality of life. Once these difficult days are behind you, you can know you made the right decision. I hope they manage his pain more appropriately and listen to you. Hey, if you have to "channel" Shirley, do it!! I hope you won't have to watch on the sidelines much longer. Please give Jack lots of hugs and kisses from Alex and Aidan. Try to hang in there.

Love and prayers for Jack (and you),

Whitney and family

Val said...

I hope that you're feeling very comfortable today, Jack. You're one incredible little dude. I think of you all of the time. I might not be the most religious person in the world, but I will tell you a secret - sometimes I do talk to God and I ask him to make you feel really good. I hear that you had a makeover on your back and I hear that it looks really good. I am so happy to hear that it went so well. I know that right now you aren't having much fun, but pretty soon you'll be home with your mom and dad and your brother and sisters and it will be great! I know that your mom is feeling sad and tired and icky right now. I hope that she can get some rest soon. She's such a special mommy and you two are so lucky to have each other. Give your mom some love from me, and feel better soon xoxox