Posts with a # at the beginning are part of our story. They are from when Stacey was little. All the other posts are current day or have a year or age noted. If you're new here and want to start at the beginning, just find #1 and at the end is a link to the next part so you can read in order.
Enjoy! Thanks for being here! :)
As the days went on we repeated the line of questions about her
history leading up to this with one specialist after another. We became
especially familiar with Dr. Yacoob. He was a pediatrician and he
described himself as our "medical concierge". He would be facilitating
all her general care and coordinating all the specialists and helping us
understand what was happening. He attended every meeting involving her
specialists or us and would report any plan of testing or treatment back
to us.
We continued to have more questions and fewer answers. Her labs weren't giving us any answers and her body wasn't responding to anything. Anytime something showed up out of the norm we began to treat it, thinking it might be the key to the rest of the story. We gave her iron supplements, she was still on iv fluids and oxygen but she wasn't improving. We didn't know what else to do for her since we couldn't find anything conclusive in all the tests being ran.
The days start before sun up and wind down around 1 a.m when time seems to be merely holding it's breath to give the illusion of rest. I hear every breath, every twitch she makes. At CHLA, Dr's make rounds 24/7 so they came in throughout the night. The list of specialists seeing her was growing and sometimes we'd have two of each department, so these visits were steady.
As I laid there on the cot at night, hearing every breath she took, my mind processed these things. My baby girl was in a Critical Care Unit. We'd passed the 2 day mark I'd imagined it would take to fix her and go home. My baby girl was being discussed in the mornings by a team that included not just her doctors here, but a video conference with Dr.s around the globe that was used for discussing unusual cases. My baby girl was lying next to me struggling to breath, limp and generally unresponsive and hooked to wires and tubes. It was hitting me like a brick wall. This is really bad. This is really happening... this is... REAL
Continue story here:
http://highfivesforstacey.blogspot.com/2013/09/11-routine-of-some-sort.html
We continued to have more questions and fewer answers. Her labs weren't giving us any answers and her body wasn't responding to anything. Anytime something showed up out of the norm we began to treat it, thinking it might be the key to the rest of the story. We gave her iron supplements, she was still on iv fluids and oxygen but she wasn't improving. We didn't know what else to do for her since we couldn't find anything conclusive in all the tests being ran.
The days start before sun up and wind down around 1 a.m when time seems to be merely holding it's breath to give the illusion of rest. I hear every breath, every twitch she makes. At CHLA, Dr's make rounds 24/7 so they came in throughout the night. The list of specialists seeing her was growing and sometimes we'd have two of each department, so these visits were steady.
As I laid there on the cot at night, hearing every breath she took, my mind processed these things. My baby girl was in a Critical Care Unit. We'd passed the 2 day mark I'd imagined it would take to fix her and go home. My baby girl was being discussed in the mornings by a team that included not just her doctors here, but a video conference with Dr.s around the globe that was used for discussing unusual cases. My baby girl was lying next to me struggling to breath, limp and generally unresponsive and hooked to wires and tubes. It was hitting me like a brick wall. This is really bad. This is really happening... this is... REAL
Continue story here:
http://highfivesforstacey.blogspot.com/2013/09/11-routine-of-some-sort.html
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