Tuesday, September 27, 2016

36 Hours

At this point, I'm quite positive I have passed the point of being up 36hrs straight. It has been so long since I have spent this much time awake, but when we are short handed, that's my job! I knew going into this week that I would not have a day nurse on Tuesday, but it was an unexpected turn of events not having a night nurse for Monday night. Our regular night nurse had a sick kiddo, and our other night nurse was not able to pick up the shift because of jury duty. Not to worry...we survived! Drake is hooked up to louder than you would imagine alarms during the nights, and I did try to catch a little sleep in between his treatments; however, my hyper-vigilant mommy-mode would not allow my body or mind to rest. I was terrified I would not hear his Def-con Level 5 Alarm (as if that would be possible to sleep through)! Of course that would have woken me from even the deepest of sleeps, but my mommy brain would not allow rest. The good news is that Drake slept like an angel and so did Kennedy and Hayes! Praise the Lord! 

Most people are not aware of the changeover happening for Medically Fragile children on November 1st.The current system in place, which allows us to see a variety of doctors/specialist, is going away completely. Here in Smith county we have two choices of managed care: United or Texas Children's. While this seems like an easy decision, it is actually quite challenging. Drake sees about a dozen doctors, most of which are located in Dallas. I'm doing my best to ensure Drake can keep his specialist, or at least his most vital. Right now we seem to be in a catch 22...I can keep this doctor but we will lose this one...I plan to push this decision right up until the deadline, and hopefully I will have more informed information to base our decision upon in the next couple of weeks. 

Our new day nurse is taking the trach/vent class tomorrow, and she should be starting with us on Thursday. I'm excited to start training her and hopefully have completed our search for the perfect addition to our care team! She seems wonderful, and she even stayed when she came out to our house for the meet and greet to learn as much as she possibly could about Drake and his daily routine. 

Tomorrow is a big day...our new nurse will be coming out after her trach/vent class to get checked off from a Respiratory Therapist and Drake is scheduled for a swallow study. He has not had a swallow study since January of 2014 right before he was hospitalized and had his trach surgery. Tonight we are praying for a restful night for all and a successful day tomorrow with nursing and a swallow study! 

My sweet boy!

Sweet Drakey lost his very 1st tooth during tummy time! Our dentist had warned us that this was a possibility. Due to the way tongue protrudes and is therefore constantly applying pressure on his bottom teeth. 

Stander time!

Saturday birthday party fun!

Yes, even mommy played! 

Giddy-up horsey!

Wild man!

Date night! Downtown Tyler Film Festival! 

My whole heart!

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