So who wants to visit us in Phoenix?
We could be going as early as Wednesday. Although Manny made mini chimichangas for the entire PICU staff today so they said they're thinking of reasons to keep us here a little longer. :)
With Christian off the vent, there's nothing to hold Christian in the PICU. He'll get his trach changed on Tuesday and be discharged by Wednesday. Then off to Phoenix!
Furthermore, there is another little celebration. When doctors are testing for neurological response, one of the many things they test are the eyes. They check for pupil dilation, doll eye reflex (where the eyes move from side to side when the head is turned, I think) and the corneal reflex. Well he had pupil dilation and doll eye reflexes but no corneal reflex. This reflex is connected to the spinal cord and occurs when the rim of your cornea is touched and you flinch because it's painful. No reflex could be connected to death of spinal cord activity.
Anyway, Christian didn't have it in the first few days after arriving. I asked the resident if she could test it again about five days ago and no luck. They told me how to test it myself so I did last night and he flinched and blinked away!!! This morning I could hardly wait to tell the resident to test him. She said she didn't need to because she already knows he has it and she didn't want to hurt him. She said he shows basic brain function. YES!!!!
Let me tell you why this makes me so happy...for the first week he was here there were doctors standing over him with glum looks stating worse case scenario. These doctors and neurologists said he had abnormal brain activity, he didn't have this, he didn't have that, he may never do this, he may never to that. That a doctor is acknowledging that it's obvious that he has "basic brain function" is like a catapult for us. I know it's small but even small victories mean so much. I'll take it!
And with less and less tying him to machines, I will soon be able to pick him up any time I want to. I can't wait!
Phoenix...here we come!
30 Easter Basket Stuffers for 2024
8 months ago
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13 comments:
I love hearing about the small victories! Keep fighting Christian.
OMG Shauna I got chills rading this, what AWESOME news!! I am so incredibly happy for all of you! I hope the trip Phoenix is smooth and I'm sure he will progressing everyday like he has been. The power of prayer is pretty amazing, isn't it???!!! He'll be running around in his Chuck's and his old self in no time...I can just feel it! You're doing a great job, and keep fighting Christian, you can do it!!!!
Yay!! This is incredible. I check in on Chrisitian's progress and updates several times a day (just in case you happen to post) and I'm SO glad I checked this morning. I'm absolutely amazed at how far this little guy has come. He's remarkable! I continue to pray for him, everyday, several times a day. You are blessed!! Keep it up Christian!! God and his angels are with you ever second.
Shauna, I can't wait to check for updates all the time as your news is getting better and better. Small victories will get Christian to big ones soon. I hope he keeps on progressing even better with the extra therapy there and than HBOT here he comes! Love and keeping you in our prayers 24/7.
I've been reading for a few days now. I saw a post on FF about your little Christian. I am amazed at the strides he keeps making. He is adorable and I just have a really good feeling about his recovery. Add one more supporter to the list. I am also amazed at how upbeat you are and how hard you are fighting and advocating for your little guy. Good job, mama!
I love coming on here and reading all of the positive things lately! Go Christian!
Shauna I just know Christian will fight this all the way!! He has so much love from his mama and everyone else rooting for him! What great progress!!
Aw fantastic!!! I wish you guys the best in Phoenix!
That is EXCITING news!!! Can't wait to read about MORE :)
Lucy
Hi Shauna, I haven't been able to check into today as often as I normally do because my Daddy had surgery this morning and what was to be outpatient converted to inpatient so I was trying to help out as much as I could. Anyway, I am exhausted from being up really early this morning baking bread and seeing Daddy and Mama off to the hospital but before I closed my eyes tonight I had to check your blog for updates. I am soooooo happy to read this news! Prayers will continue as you move towards Phoenix and even more of these little victories to celebrate - hoping for many more!
Christian is amazing. This is great news that a you have some acknowledgement from a dr. Can't wait to hear more great news.
ps> the shoes rock!
This is fantastic news! Christian is such a fighter!! I am up in Phoenix so if you need ANYTHING.....I mean it....ANYTHING...I will do anything to help. Even if it is bring you something to eat or just have someone to talk to. Dont know if Christian can have small visitors but Marlee wouldnt mind saying HI too :)
Shauna,
You don't know me -- but I heard about Christian and your story via MommysOnline. You are apparently in a Mom's group with a member's sister. I've been following your blog. I live in Phoenix, so if there is anything you need, please let me know! I cannot imagine what you are going through, but our prayers are with you!
Melissa
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