We're out! What better way to usher in July than to be discharged. Carly had another good night, her best in a month, and we were sent home to allow Carly to get back on her healing path. There are a few medications that she still needs to taper off, but we will be able to manage that on our own over the next week or so. Little C seems happy to be back in her house, and after nearly a month away Christa and I were relieved to finally step through our front door again.Since this journey began in September 2008, I have known that Carly was both a little miracle and a tough fighter. Never has she had to show that more than on this trip. The medical staff at UCSF are amazing, but Carly still managed to keep everyone guessing for so many weeks. The complete story will never be known for sure, but the version we are sticking with is this: Carly had a virus or some other type of stomach issue that caused severe abdominal pain. As the pain worsened, her body was not able to mount an appropriate adrenal response because she does not have her pituitary glad. She went into adrenal shock, despite the stress dose of hydrocortisone that we injected into her leg, and we had to rush her to the emergency room. After she was stabilized they did scans of her head and even used an external ventricular drain to make sure she didn't have excessive intracranial pressure. At that time her cranial pressure was fine so the search moved on from her head. During the next few weeks she continued to have intense pain and with each multiple hour crying episode the pressure in her head was pushed beyond the limit that she could manage on her own. The original source of her pain then ran its course, but she was left with increased cranial pressure that was only relieved when her shunt was reconnected. In the future we should be able to avoid a repeat of this because the shunt will prevent the pressure in her head from ever getting to a critical level.
Carly, Christa and I want to thank everyone for the love and support that has helped us get this far. She has a lot of healing to do, but she is a remarkable little girl and she will continue to heal and teach us something new each day.
Love, Brad
21 comments:
What a great, great day! Love seeing the three of you on the "outside"! Wishing all three of you warm, sunny days and peaceful, dream-filled nights.
Andy
HOOOORAY!!! We're all SO happy you are finally home. This weekend you will be thought of OFTEN and missed terribly...but all three of you will be there in spirit (BIG spirit! :). Knowing you have freedom this weekend from the hospital room where you can finally rest and continue down the healing path in peace is a great thing. Love you guys. xoxo
Long time reader (but stranger) letting you know how thrilled I am that your family is home, where you belong. Carly is beautiful and your strength as a family is amazing and unbelievable! Wishing you all much love and health.
Cheryl
Hurray, Carly! So glad to see you in your stroller out in the beautiful weather. It will be a particularly poignant Independence Day this year.
Can't wait to see you!
(Call when you're ready, and we'll set a time.)
Fondly, Jeri
YAY for CARLY! Keep getting better so we can see your fabulous face and smile! Lots of prayers going your way!
Yes!!!!!! Way to go Carly!! You are one tough cookie and so fortunate to have the mom and dad that you do.
Great news!!! She can get through anything with you and Christa as parents. She is just like you, one that fights until she succeeds.
Welcome Home!! I'm sure you are enjoying its comforts already. This was certainly the best news of the day! We are so thrilled for you that Carly has gotten better and has been released. Sending love and ((HUGS)) your way, Jennie & Jimmy
Wow... I am just so blown away by the three of you. Constantly and consistently. I can't say I have ever seen three happier faces than in this photo of you heading home. I can only imagine the relief, and so look forward to visiting you there for a change later this week. Big hugs and love until then. Tell Carly, "Welcome home!" for me. :)
Yeah! So glad you're home! You'll be very missed at HSMF, but banana bread with chocolate chips will be your breakfast treat as soon as I get back. Sleep WELL!
Love,
Susan
Hooray!!!!! Home sweet home. So glad to read this news.
love,
Penny
Welcome Home!! I know I speak for a lot of us when I say that this High Sierra is for Carly. Though she couldn't quite make it there herself, so many of us there will be holding all three of you in our hearts and minds.
All Our Love,
Earl
This is such great news! What a relief it must be to be home again. Let the healing begin!
Love,
Laurel
HOORAY and Welcome HOME! =) So happy to see the going home post. Continuing to visualize a perfectly healthy carly. I will be celebrating your independence from the hospital this weekend! ((HUGS))
Wahooooo!! So happy to hear the update and welcome home :)
xoxo
Carrie and Rick
This is the best news! Hopefully you guys can start to work on some form of normalacy now. Welcome back home Carly!
I am so glad to hear that you can all rest peacefully at home. Carly is such a strong baby! It's so nice to hear the good news and see another picture of Carly's adorable face. Now Carly will be able to get stronger and stronger each day and become the happy and healthy little girl that she is destined to be.
Love, Stephanie
Yay!!! You all look so amazing after such a long ordeal! I am so happy for you all and so relieved to hear that Carly is home and well on the road to recovery. Happy July!
This is such wonderful news. It is so wonderful to hear about Carly's tremendous strength and tenacity. Best wishes for a happy and healthy 4th of July weekend. We will celebrate with fireworks!
wow -- if we all feel this relieved and happy that you all get to go home, can't quite imagine how it feels for you. consider all the fireworks this weekend to be in Carly's honor!
Always sending love,
Sheila and Keith
what a beautiful sight!
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