#10 The team is forming

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.

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       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

#9 Critical Care Unit

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! :)

     We finally arrive down to CHLA (Childrens Hospital Los Angeles) and I'm following

 this team through the halls and trying to keep my eyes on my girl. I keep thinking

 this isn't happening. This doesn't happen to us! Someone asked me to come with

 them to do admitting papers... I said,"how 'bout you come with us", and kept

 following my girl. He followed. 

      We were taken to the Critical Care Unit. There were 4 cribs and in the middle was a small nurses station. Each baby was assigned a nurse. They were still hovering around Stacey when I felt a hand on my shoulder. It was the Johnsons! Our dear friends had driven all the way down there late at night! I pretty much threw myself at Christin and bawled into her shoulder! Chris prayed and I filled them in on the day. They'd brought me some snacks for our stay and assured me they would help with the older 3 kiddos and stayed with me until Carlos caught up to us.


      Since Stacey was staying stable they decided to watch and see what her body did on it's own over night and let her rest. A cot was set up next to her for me and Carlos went to a parent sleep room down the hall. We figured we could handle anything for a day or two and didn't put much effort into being comfortable.


      Her nurse was Marcia. She was not only attentive to Stacey, but to me as well. She stood for hours over Stacey's crib talking to me and getting to know Stacey and our family. She eventually insisted I lay down and try to sleep. It wasn't to be for long though. Her IV failed and had to be moved. They decided to draw blood at the same time. A little more rest only to be woken again to learn her potassium was back up to 8 and her breathing was a little rapid. More labs, a lung xray and an ultrasound of her kidneys were ordered.


     They had to move her IV again and she whimpered! I cheered! YES! She felt that! I just knew this was the beginning of recovery!! It HAD to be! Her xray looked clear and the ultrasound of her kidneys came back clear but... oh man, they like to say *but* around here.... in this case it was *Kidney's look good, BUT, they aren't working well and we don't know why*. Today's job was to try to stop her body from shutting itself down, getting her potassium low and her oxygen up.

Continue story here:
http://highfivesforstacey.blogspot.com/2013/09/10-team-is-forming.html
 

#7 This has got to be a false alarm!

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! :)

      Her potassium was staying too high. CHLA decided they would send a team for her. They had an angel flight bring a Pediatric cardiologist, infectious disease Dr and a PICU nurse to us. This seemed unbelievable to me. I could not get my head around her needing this intensive care!

     When the team arrived they were very kind and explained things the best they could. They would work to stabilize her, lower her potassium level and fly her to CHLA. They agreed to have an ambulance drive me down with lights and sirens to minimize the time we would be separated. The medical team needed the room to work on the flight and I couldn't go with her.

      Hours were passing. Medicine. Wait. Labs. Wait. More medicine. More waiting. More Labs. Repeat. She was out of the unconscious fog and now looked like a sleeping baby. She would flinch with poking but still no crying. My irrational mind kept begging to hear them say *opps, false alarm, she's fine, go home* And yet, I could see this wasn't the case and something big was brewing.

Continue story here:
http://highfivesforstacey.blogspot.com/2013/08/8.html 

#6 irrational thoughts

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! :)

   
She starts to wake! I feel so hopeful! She looks pink again!! Carlos was there now and trying to be reassuring. A few family and friends are now in the ER lobby. I feel inconvenient. Then one of the pastors from church came in. My mind was overloaded and I had an odd response to him being there. I was angry. Pastors visit really sick or dying people and he had no business being there. I *knew* we'd be sent home soon and he'd have wasted his time. I know how irrational that is now, but at the time, that's about all I had left, a bunch of confused, scared, irrational thoughts.

     Labs were starting to come back. I expected answers. All I got was more questions. Each result created the need for further testing to narrow things down. There was indication that her kidneys were failing. Her organs were beginning to shut down. They started a variety of medications and ordered more tests. The most critical at the moment was her potassium. It came back at 11 the first time and they ran it again to be sure and it had increased to 12. This was twice the level it should be and put her at huge risk of cardiac arrest. This is when they started talking about medivac. They contacted a team from CHLA and was told they couldn't transport her until she was more stable. And here I thought she was getting better! More labs, more questions, more fear, more singing in her ear.

Continue story here:
http://highfivesforstacey.blogspot.com/2013/08/7-this-has-got-to-be-false-alarm.html