I know this is getting a little redundant and pretty soon everyone out there in blogland won’t have a reason to check in on us but we still don’t know when we are going home. Dr. Jackson (GI) has been out of the hospital all week and since he is not on call the only one that should contact him is Dr. Such-Neibar. So far they have not connected. As far as we understand Dr. Jackson still wanted to try the venting G-tube before extending his g-tube to his intestines. The venting g-tube was ordered a week ago but has not arrived. So I think we may be here for the weekend. I told the resident that Coop has had an increase in gas and it seems to wake him out of sleep. Since we will be waiting anyway we are going to try stopping the erythromyacin (it can cause stomach cramping) and see if it makes a difference and if Coop can keep his bowels moving without it. I think later today I will put him in his stroller and go for a walk around the hospital. He can be disconnected from his feeds for 4 hours a day. Rob gets back in town today from being gone all week so I’m excited to see if he thinks Charlie has changed at all. When you see him everyday it’s sometimes hard to see the subtle improvements. I wish I had more news/pictures to share but we haven’t had much action. And that’s just the way I like it!
12 comments:
Good luck you guys! I think he looks great.
I agree. I think he is a cutie.
I know what it is like to be around your kiddos and not notice the subtle changes. Josh was gone for a few days when our little one was a few months old and he mentioned that he had changed a lot in the short amount of time he was gone. I hadn't noticed it. I also think we as parents change also. He may notice that you may be more confident giving the meds or even moving the wires around to hold him. We get so use to the wires being around and moving them that others who are not around as often get intimidated by the wires and other things necessary to help the kids get better.
Good Luck and hope you don't have to wait too much longer.
Angel,
Is Dr. Jackson exclusively involved with Charlie? I know when Dr. Book is out of town, we usually receive instructions from Dr. Jackson, Dr. O'gorman, or Dr. Guthry. I know that one of those four are 'on call' all the time (we should know the 'on-call'GI doc hears from us if Jada even passes gas with irregularity).
However, I understand the security of being in the hospital, and a few more days probably don't seem like too big a deal. But just thought I would let you know. -Troy-
i think you've already been there 3 months, what is a few more days right ;)
i'm interested to hear how he likes his stroller ride. he needs to start training for his big 5K!
he looks great; his eyes seem so much more focused, too. Are there any improvements with his eyes or still not sure? keep up the good work!
Boo to too much gas and bloating! Hang in their Charlie.
Charlie looks quite happy to be soaking in a warm tub! He is such an angel! You are all such strong and inspirational people! Your faith and determination are noticed by MANY people. Your story has mad e avery positive impact on my life. I pray for continued steps of improvement!
He looks great in the tub. He seems much calmer and more comfortable now. So great to see his progress. I am so excited that you get to go home soon too! Enjoy your stroll and hopefully you'll be taking Charlie on a walk around your new neighborhood soon!
Angel, I wrote a long, rambling comment to you yesterday and then my internet went out and it was lost. I saw your comment on my blog today and it made me so happy. I don't want to be redundant, but what I said, before it was deleted, was how much your little boy and you mean to me - even though I haven't seen or talked to you in ages. I read Charlie's blog multiple times a day and my emotions swing from excitement when he's doing well, tender sadness when I see his twisted little expressions during a workout, and most often, sheer disbelief when I see your beautiful face and the light you just eminate. You are so lovely and your smile bespeaks optimism and faith and gratitude. I know there is a much deeper well of emotion that you and Rob must have, but as an outsider, I see you both and my faith is strengthened; that there is a greater plan, that people do survive what seems to be the greatest of trials, and they not only survive but triumph in the process. So many times I've wondered how I could just show up at the hospital and be in Charlie's presence and just sit at your side and ask how you do it. I've just wanted to be close to someone who seems so strong and loving at the same time. I've never dared - haven't wanted you to think I was weird or a drama-monger, and I regret that. As you saw from my post, we've got some stuff going on right now that makes me think, "why us?" and "why does this have to be so hard?" In those moments, I read of your family's grace and I am sincerely, truly inspired. I love your little baby - really, I do. He is indeed a magnificent spirit to be touching so many so early.
Thanks,
A
I hope you will keep posting even when you're home. I have fallen in love with little Charlie, and would love to get updates. I check this blog every single day, and hope to be able to keep getting updates when he's home in his new house! He looks healthy and well, and like he's gained a little weight...love the little rolls on his arms! :) God be with you all.
-Rachel
I'm so glad that going home is finally in sight! Charlie has become a household name around here... my husband, children and even my mother want daily news regarding your very special boy.
On another note... I had a dream that I was going to babysit Charlie and I was in the same room with him and I was so concerned that I wouldn't know how to pat his bum right! I wanted instruction on how to make him most comfortable. (hope that doesn't creep you out)
Glad things are so much better!
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