High Fives For Stacey: August 2013

8/17/13

#12 Raging whaaat?

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 Pediatrician broke the news: "It's pneumonia. Come look at the xray with me." We walk down the hall to a small room with desks lining the wall and a light-box in the back. I'd never read an x-ray before so I had no idea what I was looking at. "Raging pneumonia" he said. "Raging? What do you mean, raging?"

      "Well, it's in both lungs. They are completely full of fluid. We don't know how we missed it, but this seems to be the problem." I'm confused. "But she hasn't coughed, had a fever or anything, her only symptom was last night when her o2 dropped." He showed me the first x-ray from a few days ago and the difference was astonishing! Even this "answer" was bringing more questions.

      I just wanted to scoop her up and take her home, give her some medication and forget all this ever happened!

      He must have seen these thoughts flicker in my eyes... "We need to treat her here. She's very sick. We have a lot of work to do. Babies her age don't cough very effectively (she hadn't coughed once at this point) She'll be on a 7-10 day course of IV antibiotics.

      An end is in sight! We have a plan, we may not have all the answers, but we have enough to give us a plan and date to go home!

8/15/13

#11 Routine of some sort

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 were in a routine now. They would routinely draw blood at 7, 12, 4 and 10. Her veins are filling with scar tissue and the sticks are getting harder to do. Sometimes it takes a few tries. She fusses a little and although it makes me sad, it's encouraging. She's fighting. We just don't know what. The lab results keep changing, but not giving answers.

      Then, her blood gas dropped. This tells how her blood is oxygenated. It should be around 20, her's dropped suddenly to 11. A retest confirmed. They have to do an arterial stick - meaning they do a blood draw from an artery. This requires local numbing first since it's way more painful than a regular draw. She actually cried. She sounded hoarse and week, but it was a cry, not just a whimper.

      Based on the arterial stick, they decide to order another chest xray. They'd done a series the day we arrived, and it was clear but she was quickly requiring more oxygen and her respiration's (speed of breaths) were climbing.

      After another night of dozing between consults, changing diapers, soothing and feeding her (half nursing, half pumped breast-milk from a bottle), we woke to what some would say is horrible news for a 3 month old, but for us, it was an answer....

Continue story here:
http://highfivesforstacey.blogspot.com/2013/08/12-raging-whaaat.html

8/12/13

#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.

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

8/11/13

#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

8/9/13

#8 prayers un-prayed

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! :)

Finally we have a potassium at 8! They feel she can handle the flight now. We made the final arrangements and Carlos left to grab some things from home and head to CHLA. They loaded her on the flight gurney and led me to the front passenger seat of an ambulance. Those moments of separation were excruciating but even unspoken prayers can be answered. The back doors of the ambulance flew open and as I looked back I saw them loading my baby girl! We were going to drive! Together!! My tears freely flowed as I thanked God for this gift!

During the prep to leave, the flight the team felt they needed more room to tend to her if she crashed and the ambulance provided that better than the helicopter. Within moments of loading her we were on the road. Lights flashing, sirens blaring as we drove through town. Once we were on the freeway the sirens stopped and I started to chat with the driver. I told him she is our 4th. How our family has adjusted so well to her arrival. How the day had played out. I told him her name. He opened the mic to the back so we could hear them. She was stable. There was a little window I could see her through. She didn't look familiar to me. MY baby is pink and full of life. This baby was pale and limp and buried in wires and tubes and bleeping machines. I just wanted MY baby back.

Continue story here:
http://highfivesforstacey.blogspot.com/2013/08/9-critical-care-unit.html

8/8/13

#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

8/7/13

#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

8/6/13

#5 So many questions

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 were taken into ER room 7. It's one of the few with a glass door, rather than just a curtain. There was instantly a crowd of nurses and dr's surrounding her. Taking her vitals, shouting out numbers. Trying to find a vein to start an IV. She's limp. I'm asked to step back and I comply for a moment. No movement, no crying with the needle pokes and they can't get an IV. I squeeze to the head of the bed and nuzzle my face close to hers. I try to sing Jesus Loves Me to her. My voice is breaking with my heart. I start to hear things, "20% dehydration, unresponsive, call the PICU to try to find a vein, call the social worker, call CHLA, get her history, and everything was punctuated by *STAT*"

I don't want to interrupt them so I process what I can and sing to her while I wait for someone to talk to me.

A woman calls me aside, great, I'm going to get some answers, I thought... but no, I was to be giving them. I'm suddenly being grilled about her and my care of her. Drugs? Alcohol? Air conditioning in the car and home? Last time she saw a dr. The answer to that is what put a stop to this accusing tone of questioning. I could tell they were assuming I'd neglected or somehow caused this. When I told them she'd seen a Dr just a few days ago, they only wanted to speak to him. He was there in about half an hour, and defended my family and directed them to focus on Stacey. The ER dr finally speaks to me. He has no information other than to suggest I call my husband and plan to be here a few days. For some reason this surprised me. I was still holding on to the ideal of them fixing her and sending us home.

Still no answers, but 13 needle pokes later with not so much as a whimper from her, they had started an IV and drawn blood so now we wait. I made some quick calls and resumed singing to her. Looking for evidence of her will to live. She was breathing on her own but was so still I kept putting my ear to her chest to hear her heart beat. There were wires and monitors all over, oxygen tube on her face, IV's in an arm and a foot, and that door to our ER room was closed. This concerned me greatly. There were far more questions than answers. A nurse brought me some food and drink and a blanket. I kept singing in her ear, as if it was a pleading to both her to stay with me and to Jesus to intercede for her and let her stay. I'd asked Carlos to bring me clothes for two days. I had no idea how long those few items would have to last...

Continue story here:
http://highfivesforstacey.blogspot.com/2013/08/6-irrational-thoughts.html

8/5/13

TIP: 6 things you need to know about personal space

TIP: It's not a good idea to touch a special needs person unless you know they like

to be touched by you. Some are very sensitive to touch and personal space. If they

reach a hand out, respond with your hand. Don't assume that means a full-on hug

will be tolerated. Let them lead the contact.


Stacey and Little Bro

6 things you need to know about personal space:

1) The 10 mile radius: Some people have a very large "personal space" boundary. They don't like to be approached, stood or sat next to. The best thing you can do is pause and look at their body language. If they seem receptive to you, you might reach out to shake a hand or take a small step closer and watch for a response.

2) Look but don't touch: Some might be okay with you being close to them, but don't want their possessions touched. Respect this. No touchy.

3) Free head locks: Some may have no personal boundaries. They not only like you to be close and touchy, but they might instigate touch not typically appropriate. It's okay to say to them something like "no hugging, but let's shake hands".

4) Yes, no, maybe so: Some are just down right unpredictable. They may hug you to death one day and scream when you approach the next day. Just go with the flow!

5) Speak my language: Body language isn't always understood by everyone so use words and cues to get your point across.

6) It's not me, it's the sensory: Realize that sensory issues can't just be ignored. If you're unsure of what to do, it's better to keep a little distance and either ask a family member or wait to see what the person instigates first.

8/4/13

# 4 Such a fitting quote

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! :)

This is the cover of my journal. When I bought it,

I had no idea how fitting it would be!

After arriving at the ER, I had the first of what would be many encounters

requiring me to advocate for my girl.

(*If you're on a phone, tap on the pic to open it then zoom in on it to read it.)

Continue story here:

http://highfivesforstacey.blogspot.com/2013/08/5-so-many-questions.html

8/2/13

#3 Scary stuff

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.