Heather asked me to post a short note to update all that follow our journey. Zoey is doing amazingly well. Like all other obstacles placed before her, she continues to show us that there is no hurdle too tall to overcome. The doctors started her on a three course antibiotic in the middle of the night last night. They are in place to ward off the bacterial pneumonia and any other yucky bug in her little system.....but there is one small addition to little one's resume.
Heather and I decided to make sure there wasn't any RSV going on, so they did a culture this morning. Yep. You guessed it. Positive. They did a quick check and a longer version to be sent to the lab to see what "grows." They came back to me in less that an hour and said that the quick check was positive, so no need for the full test. Figures. This little monkey has been harboring the RSV and that's what caused the pneumonia to settle in. Man... how I wished the doctors heard us when we asked to check for RSV last week. We probably could have avoided the whole pneumonia thing. Don't get me started!
Heather sat and talked at length with the doctors today and let them know how we felt about her care management from the past week, and especially yesterday. Hopefully, they have learned something from this experience...both in communicating with the family, and understanding that kids with Down syndrome are not your typical patient. We know that Zoey is unique. She does nothing in a typical fashion, and NOBODY knows her like her mother. We tried to tell them, but it wasn't heard. Let's hope they do fom this point forward.
Now it's time to move on. We were shuffled into isolation just down the hall this evening. Our accommodations aren't nearly as nice as the Presidential suite we had been staying in at the CHLA Hotel. It's a shame that this had to be done at all. Thank you all for checking in and keeping the family and our Little Miss in your thoughts and prayers. Please continue to do so. I'm sure Heather will find a minute to update when she is home tomorrow night.
Since I was up most of the night last night, it's time to find my pillow and get a few hours of sleep.
“When you have come to the edge of all light that you know and you are about to drop off into the darkness of the unknown, faith is knowing one of two things will happen: there will be something solid to stand on or you will be taught to fly.”~ Patrick Overton
21 comments:
I am sorry to hear Miss Zoey has RSV. Hopefully she can get past this icky oneumonia and move forward soon.
It's terrible that you all got moved to a not-so-nice room. Bummer.
I will continue to pray for sweet Zoey.
So sorry to hear that Zoey has RSV, keeping all of you in our prayers.
Mark - Nice posting - everyone wondering and worrying about little Zoey. Hope you and Heather can get some much needed rest and at least some peace of mind that the hospital is treating Zoey correctly and that your (both) talk with the doctors opened up Better Communication.
Take care
"Aunt" Bluebelle
Sorry to hear Zoey has RSV too. Praying the talk with the doctors eases your mind and that they will FINALLY listen to mom!
Please, continue to keep us posted on Zoey.
We are praying she recovers quickly.
Joany
Praying hard here for our little friend.
Poor sweet girl! Fight through it all Zoey! You are such an inspiration!
Get better soon sweet little princess!!! You are in our prayers!!
Alyson - Mommy to Evan and Avery (severe PPHN)
http://wellensfamily.blogspot.com
My thoughts and prayers are with Zoey - I hope that she gets better real soon!
Thanks for the update Mark. And thank you Heather for helping the doctors become better listeners. Hopefully they get it. Keep fighting Zoey...your troops surround you.
kathleen
Thank you for the update. I know that God is protecting her as well as medicine. We love you all and prayers are constant, Christi Harman
My goodness...all I can do is pray, pray pray that all will be well, she'll fight this off and pray that both you, Mark, and Heather get some peace and sleep to stay rejuvinated and strong. We send our love....
RSV, yuck. I pray that she gets well soon, we are anxious to meet her next week, so I hope she gets better.
Thanks for posting...we will continue to pray for sweet Zoey.
Alison and Gang
Hang in there - a lot of people are praying (all over the U.S.) are praying for Miss Zoey.
Thanks so much for updating us. I'm sending lots of extra prayers up for Miss Zoey and all of the Needham's. Christy Pinuelas
Oh...those doctors are going to have hell to pay! I know Heather is going to let them have it big time! That is just so frustrating that even when your child is in the hospital and immune compromised they don't listen to what the parents have to say! Makes me so mad. Hang in there miss Zoey...RSV is the pits. And don't hesitate to ask for the breathing treatments. They made a world of difference for Reagan.
My prayers are with you and Princess Zoey. My son had RSV when he was about 6 months old, it is not fun. Keep the positive thoughts!
Oh, poor Zoey! I am so sorry you are going through this! I hope she fares better than Addy did! Prayers your way!
so many kids are getting RSV. sheesh! keep your heads up! luv lil zoey!
Well, I just ran into gorgeous Taylor at Baja Fresh this evening, and she kept me abreast on our Miss Zoey.
You continue to be in our everyday prayers. Zoey is one amazing child and she will get through this RSV, showing us all that love conquers all.
Thank you so much for the beautiful heart necklace, Heather!! I put it on as soon as I got it on Saturday. It's simply beautiful. Thomas is the angel, holding up the "T" for Tish. :) The emerald is shaped liked a pea, which represents how Thomas and I were two peas in a pod. I absolutely love it... thank you so very much.
Your beautiful, amazing Zoey remains in our hearts and prayers.
We love you,
Bob, Tish & family
Grrr...how absolutely frustrating! ...is it okay to say I'd like to kick some shins...hard?!!
Continued prayers for our favorite little Zoey.
Post a Comment