Monday, April 1, 2013

Long Overdue Updates!!!

I have neglected this poor blog and I am sorry!!!  These updates are long overdue!!!

Early February Taylor was diagnosed with Protein S deficiency and her Pediatrician thought she might of had a stroke.  She had an MRI and it was negative.  Tay also went to a neurologist and he was confident that she didn't have a stroke.   THANK GOD!!!!  So the protein S deficiency will be controlled with medication by a hematologist.

Taylor turned 19 in February.  How am I the mother of a 19 year old???

We had the whole Belle blood scare.  UGH!!!  She will have another CBC this Saturday in hopes that her white blood cell count has gone up.  If it hasn't I think the next step is to consult with an oncologist.

Conor turned 18 in March.  OH MY!!!

Taylor left for Ukraine March 5th.  Since this was the fifth time she has left for Ukraine it was much easier this time.  We do Miss her something awful though.

Lyla's surgery was cancelled.  This was a good thing.  For many reasons.  First the anesthesiologist told us it might be a "soft call" but she was not comfortable with the way Lyla's lungs sounded.  A few weeks prior they had a little girl ready for heart surgery.  The anesthesiologist listened to her lungs (sounded the same as Lyla) and felt comfortable putting her to sleep for the big surgery.  When they put the breathing tube in this little girl it flooded with secretions.  Her oxygen dropped to the 20's.  They had to stop everything and get this little girl breathing again.  The anesthesiologist was very honest with us.  She explained that if this happened with Lyla they wouldn't be able to get the tube out and she would drown.  She would DIE!!!  Really, I didn't even need this story to walk away comfortable but the story made me realize so quickly how GOD was all over this.  You can't tell me that little girl didn't save Lyla's life!!!  YOU CAN'T!!!  HIS PLAN!!!  THANK YOU JESUS!!!!!

Then on the way home from the hospital I decided to call the ENT for ear culture results that were taken from Belle and Lyla the week before.  ARE YOU READY FOR THIS?????  Both girls cultures grew E-Coli.  UGH!!!  The ENT and our Pediatrician had never even heard of such a thing.  So they decided to re culture the girls.

Prior to the second culture Lyla got very sick.  (THANK YOU AGAIN ANESTHESIOLOGIST FOR CANCELLING SURGERY)  One night I called an ambulance.  I overreacted a little - YES.  Lyla had been napping and she woke up choking.  I now think from maybe post nasal drip that had hardened???  Well she turned BLUE!!!  Like how she was on the plane BLUE!!  No, even bluer.  I called 911!  They arrived with in minutes.  They walked in the door and I looked at Lyla and she had returned to her normal beautiful color.    So I told the ambulance we were all set and they could leave with out taking Lyla.  The EMT's were so good about it.  I still brought her to the ER and they diagnosed her with an upper respiratory infection.  The ER Doctor couldn't tell if she had pneumonia because her lungs are so bad anyways.  The chest x-ray is what they would expect for a child with a severe heart defect and Pulmonary Hypertension.    She was so sick.  Her cough was AWFUL!!!  She was just a mess!!!  Poor little Love!

Then it was time for the second culture.  Both girls had pretty bad colds by this time.  Uncle Mike was kind enough to go with me.  Really, his job was to keep me calm.  He did a great job.  I started to get a little emotional and loud with the ENT and his smile reminded me to ease up.  Everyone had been sick, Owen with strep, Gav with congestion and the girls with these awful colds.  I was not in the best of moods and I was willing to obviously take it out on anyone.  So the two ENT Doctors seemed the perfect target.  Especially since I didn't think they were handling the culutres with enough urgency.  But, hey that's just me!  After a heated little conversation they decided to put both girls on a new compounded nasal spray and told us they would call with the culture results in a few days.

The nasal spray is a GOD SEND!!!  The girls cleared up so nicely!  But their sweet little ears just kept draining.  I don't mean a little drainage.  I mean thick yellow drainage that is so not suppose to come out of an ear.

I called the ENT every day, sometimes twice a day for the results.  Finally they came back - STILL POSITIVE FOR E-COLI!!!  UGH UGH UGH UGH UGH

The ENT wanted to speak with an infectious control doctor before admitting the girls for IV antibiotics.  So now per the Infection Control Doctor both girls are on a new ear drop.  Guess what????  IT SEEMS TO BE WORKING!!!!!!!!!!!!!!!  OH THANK GOD!!!!!!   Bellie's ear is completely dry!!  Lyla has one dry ear and one draining a small amount compared to what it was.  OH THANK GOD!!!!!  You know what the ENT said to me???  She said we normally don't prescribe this ear drop because children complain of ear discomfort but I am sure your girls will do fine.  WHAT?????  You mean because they are non verbal?????  Mama Bear - CALM DOWN!!!!  I have not addressed this statement with her yet.  I let it go.  It is more important my two sweet girls get better first.  But when they do....................................

Lyla has been so healthy for 6 days now.  So full of energy and she is breathing GREAT!!!  So Amazing!!!  We are so grateful!!!!!!

Well that was lots of info.  I hope it wasn't too much for one reading???

Oh Lyla's surgery is scheduled for May 15th!  I like that it is still six weeks away!!!!

1 comment:

  1. Hi Summer, It was a year ago this week that I came across the Reece Rainbow site on Easter Sunday and found your family where I donated to bring Lila home. I am so happy to see that a year later, Lila is happy in her new home surrounded by her brothers and sisters. I hope when I check in next Easter she will have recuperated from her surgery and be on a path to many years of health in her new home.