Thursday, March 27, 2014

Spring break in the hospital, bummer

The kids spring break started on Friday, March 14th.  It was a beautiful day so we picked up one of Aidan's friends and took in a park all day.  Saturday was equally as nice, if not nicer so we again took in a park for several hours.  The girls wore themselves out on the playset while Jason and Aidan practiced soccer skills.

By late Saturday night Alayna was running a mild fever.  The fever continued for the next few days while adding in a lovely middle of the night cough.  I was sure she had croup so didn't run her to the pediatrician.  By Tuesday she was perking up and not running a fever anymore and we were making plans for fun activities for the rest of spring break.

However, Wednesday morning brought a lethargic and fever ridden girl.  I called our pediatrician and couldn't get in that day so took her to urgent care.  Once there she was seen in minutes and her oxygen saturation was 82 (normal is 100).    The urgent care doctor did not want to go any further and sent us on to the ER.  We made it to the ER of the children's hospital in about 15 minutes and were again seen immediately.  Her O2 sats were a little higher by that point, around 87 but still not great.

They did breathing treatments, suctioning, and xrays to try to find the cause and came up stumped.  Three doctors thought it was pneumonia even though it didn't show up on her xray.  At this point I was praying for pneumonia so we could get antibiotics and go home.  They started antibiotics and did more breathing treatments and put her on oxygen but couldn't get her O2 sats above 90 so she was admitted about 9 pm Wednesday evening.

That evening was a complete blur as we got no sleep for all the doctors and respiratory techs in and out trying to get her oxygen levels up.  By Thursday she was still having much difficulty breathing and they swabbed her nose to run tests for many viruses.  

By Thursday afternoon she was on 100% oxygen and still unable to raise her O2 sats above 85.  This earned her a trip in the coolest ambulance ever to the main children's hospital, headed for the ICU.  Thankfully right before the transport team arrived the doctor had begun continuous nebulizer treatments on her for 2 hours and that brought her oxygen levels up high enough that we avoided the ICU but, we still were transferred to the main hospital as the feeder hospital doesn't have an ICU and they were concerned that she might still need it.

Once at the main hospital we were given the RSV diagnosis!  UGH!  She has had it twice before and was hospitalized for 3 days both times.  So we knew then what was before us.

She tried to sleep when she wasn't woken for treatments and testing.  
On Saturday she was off oxygen for 7 hours but, as soon as she fell asleep she started desatting again which earned us another day (or more)!

She enjoyed popcorn and movies in bed once she felt a little better.

Finally, Monday she was off oxygen at noon and remained off all night long.  When her doctor came in on Tuesday morning for rounds Alayna and I were both overjoyed with the news that we could leave our little home away from home.  I was a little concerned as she was loving all the attention, tv from bed watching, ice cream etc that the hospital had to offer.

Back to reality sister!

We are so grateful to Aunt Jane and Uncle Ed, Janette, Scott and Amy, and Tammy for keeping Aidan and/or Dariya for us so that Jason could come to the hospital.

We are thankful to Chris, Scott, Megan and Brett, Amy and the DSG, Sarah and Shan, Ed and Jane, Elise, Grace and Rayne, Kylie and family, Dick and Diane, Paul, and the whole transportation department from the school district for visiting and or spoiling our little princess upon her return home.

Praying we never see the RSV bug around these parts again!

Thursday, March 20, 2014

Second verse same as the first: hearing loss

Last week I took Dariya back to the audiology clinic for further testing to see if they could pinpoint better her hearing loss on her left side.

Unfortunately, the results were the same as 6 weeks prior.

Right ear is in the normal range.

Left ear is profoundly deaf.

No aids would benefit her at this time.

Our main concern right now is educationally how this will effect her.  We know that her kindergarten class will be double the size of her PreK class.  With her type of unilateral loss it is hard for her to hear speech with background noise and to localize sounds.

It will be harder for her to hear and tune in to what the teacher is saying with a crowded classroom of kids.

The bonus is Dariya loves school and does compensate really well with her right ear.

We will just have to keep an eye on that right ear to make sure it is always hearing well so that she can continue doing so well.

Tuesday, March 18, 2014

Behavior and illness go hand and hand

Last Tuesday Alayna's independent therapists said she didn't have a very good day. In fact, the worst session they had seen from her since starting last June.  On Wednesday and Thursday she had negative behaviors with her school peers that couldn't be explained.

My mommy radar immediately knew she was getting sick.  Her sure tell sign of illness is bad behavior a few days prior.  Any of my ds friend's kids like this?

Sure enough she was ok on Friday as it was our first day of spring break, but she wasn't quite herself.  Then on Saturday the respiratory junk and fever kicked in.  By Sunday night she was up coughing ALL night long.

Thankfully she is starting to clear the junk out.

Hoping we can salvage at least the end of our spring break to get out and have some fun.  Poor Dariya is bored out of her mind but, she makes an awfully cute nursemaid.

Alayna only wanted her to hold her and Dariya quickly appeased her and sat on the couch like any good big sister would and patted Alayna until Alayna wanted to get up.

Oh, I am blessed.

Thursday, March 6, 2014

5th grade musical

Last week Aidan performed in his last elementary musical (sniff,sniff).  The program was Sing me a swing song and featured Swing and Jazz songs from the 30's and 40's.

They performed numbers by Duke Ellington, Ella Fitzgerald, George and Ira Gershwin and Louis Armstrong just to name a few.

Aidan thoroughly enjoyed learning all these songs.  I guess he got his love for great jazz from his mom ;)!

Here he is on his saxophone  (lip syncing) to In the Mood by Glenn Miller!

Alayna loved the show and was super proud of her big brother.  When he came out on stage she said, "Hello Aidan!" loud enough for the whole gym to hear!

Dariya was too busy greeting the asst principal by climbing in his lap.  I guess they will be best buddies next year when she heads to kindergarten. ;)

Here is one of the nine songs they performed.

Super proud of you Aidan!