Back at Cleveland Clinic but being discharged Friday!

Well this is the first time this week that the computer has been working here at the Ronald McDonald family room in the hospital.  I've been wanting to post something all week, but haven't been able to.  I'm thankful for Lowell and my sister-in-law Lisa who've posted updates on facebook for me throughout the week. 

Last Saturday evening the 26th, Cayla was crying through nap times and started this whole routine of being inconsolable for some unknown reason.  It's so hard with babies when you have no idea what's bothering them.  We had a rough night as it got worse.  None of us were getting any sleep.  Just when we thought she was going to sleep, she would start whimpering a few minutes later and work herself up into a frenzy where nothing would console her.  By Sunday morning we were all exhausted and then when Lowell got back from teaching Sunday school, Cayla threw up on him as I left for church.  He said he'd be fine.  She looked like she was going back to sleep.  I got to enjoy being back in church Sunday morning thanks to Lowell watching Cayla.  When I got home, he was looking very frazzled and tired.  I started noticing her breathing was getting really uneven and labored.  Later in the afternoon, Cayla projectile vomited down me.  She has never spit up at all, not even a little bit, so this really started me wondering what was going on with her.  Lowell had taken a nap and the first thing he noticed afterwards when he went to check on her in the bassinet was her breathing was now retracting to the point where it looked as if every breath was like a hiccup.  I wanted another opinion, so I called our home care nurse, Elaine Lux.  Elaine and her husband Bob are the ones that started the Sonshine Corner Christian Bookstore 30 some years ago.  She was excited when Cayla's name came up on her list of patients to visit!  How awesome that God gave us a nurse that we already knew and is a Christian!  She said she was coming up to Ashtabula to run some errands and then would be able to stop by and check on her.  Cayla was sleeping for the 1st time, so I told her there was no hurry.  She had just seen Cayla on Tuesday and took one look at her and said we should take her in.  Her color was much whiter than she'd been Tues. and with her breathing and overall look, she didn't think she looked good at all.  Lowell had just called the night nurse at CC and she said to bring her in too.  Problem is that they don't want us driving her to CC, but to check her into the nearest ER and get medical transport to take her and stabilize her.  So, we went to ACMC in Ashtabula and the ER doctor took one look at her, read the discharge papers we had about her condition and immediately called for transport.  By 7pm I asked if I could feed her since it was time and they said yes.  Well, I wasn't thinking about her throwing up earlier and within a half an hour after feeding, she threw up, projectile style, on Lowell twice in the ER.  They took a chest x-ray, drew blood, and who knows what else while we waited.  When the paramedics arrived to take her, they put in an IV and off we went.  I rode in the ambulance and Lowell, Samuel, mom, and Cathie, followed behind.  They started giving her fluids on the way since she was looking dehydrated.  Thus, we arrived at CC.

If I continue this detailed, I will never get through the week... :o}  Oh well, we started in the step-down unit where we were discharged from the previous Monday, but by the time she threw up again that morning with blood mixed in and extremely lethargic and weak, they moved us to the PICU (Pediatric Intensive Care Unit).  I don't even remember all that's happened this week as I sit here needing to go back to her room, so I'm going to jump ahead to say what they've concluded as they get ready to send us home tomorrow. 

They thought it was an infection so they started her on 2 types of antibiotics.  Today they said all tests, and they took many, have come back negative and there was no infection.  Her white blood cell count was really high and actually is still somewhat elevated today, but otherwise she has stabilized.  She would lay there as they were poking needles all around her arms, legs, and head and not shed a tear.  Most of the time she barely flinched... this is not our precious Cayla Joy... She was pretty sick, but she is doing so much better now.  The cardiologists are clearing her of this being heart related, but are very concerned because they have no idea what this was, where it came from, or why it started.  This is like the other 2 "episodes" she's had in the past that led to the breathing tube and other set backs.  They had no idea what caused this in the past or what caused this all this week.  They want to find out what is triggering these episodes.  They are calling in Endocrinology, Immunology and the genetic doctor to re-evaluate and dig deeper into what's going on in her little body.  They tested her thyroid today and tomorrow I have an appt with neurology as well. 

Last night her IV in her foot quit working and they tried to put in another and couldn't after many tries.  So they had to give her the antibiotics by 3 needles in her thigh.  She was so worked up that an hour later, even when laying quiet and still, had her blood oxygen level in the 60's and occasionally dropped to the 50's.  So she was on oxygen last night, but was fine this morning without it. 

We would ask for prayer that someone, somewhere, somehow would be able to trace the source of what sets her body off like this.  They said that this could very likely continue happening periodically until they determine the cause.  Immunology can't do much until she's a little older, but have said to treat her with even a little more caution as far as being around anyone remotely sick and to diligently use sanitizer.  So, please don't be offended if we ask you to stay away or wash up first. 

Dr. Gurd did come by today and her cast was removed, but they were unable to return to recast it, so Cayla is enjoying a break right now from having a cast on.  :o)  Tomorrow it will probably be put back on.  Her foot is actually straightening out already.  I left the camera with Lowell when he left Tues night so no pictures.  Oh well.  :o)

I need to get back but could type forever with all that's going on.  I'm just glad I've been able to finally get to a computer for the first time since Sunday.   Thank you for your prayers! We're looking forward to being home tomorrow again and give it another try at home.  We didn't quite make it a week last time, so we're going to beat that and set a new record of length of time at home.  Love to all!  :o)