Bringing Medically Fragile Baby Home - Oct. 8th SB Awareness

I apologize for missing posting yesterday, but I was blessed to have a dear friend come to visit me  - Jen Potter, who's son has Spina Bifida.  We met online through an SB Yahoo group several years ago - Owen and Toby are about a month apart.  We met in person for the first time when she came to our church for a conference for moms of kids with special needs.  After that we attended the National SB Conference together in Indianapolis, and since then have been able to get together several times. We also share home schooling, which has been wonderful for us!  She's a truly kindred spirit, and we had a great time together the last few days.

I digress - here's today's post:

Finally, after spending almost 4 weeks on the step-down floor.  Toby was ready to come home. Basically, we had a crash course in nursing and respiratory therapy in a few short weeks.  One of our favorite floor nurses and respiratory therapists came with us - Rita and Johnny.  They taught us everything we know. Johnny has since retired, but Rita still works at NCH, and I am always guaranteed a wonderful supportive hug when I see her.  We love her, and she loves Toby.  Toby came home in his own personal chariot - ambulance transport!

Oh my goodness, we were scared to death bringing Toby home.  We were beginning a new normal that not only included all of his medical equipment: ventilator, oxygen, suction machines, feeding pump, nebulizer, concentrator, and ambu-bags, it also included all the supplies that go with those items.  Another part of this  was adjusting to having strangers in our home: private duty nurses, physical, occupational and speech therapy, respiratory therapists, nursing supervisors, case workers from the county, and the list goes on and on.  They were there to help us care of him, but the chaos and lack of privacy really got to me at times.

Just a little picture of our home set up.

Our second night home, sleeping on Daddy.

The first nurse Toby had during day-shifts was truly sent from God.  She had experience with respiratory issues from her children being premature, and that really helped with Toby.  God truly used her to keep him out of the hospital that first year.  He was sick many times with urinary tract infections, respiratory infections, but not once was he hospitalized for any type of respiratory illness. Somehow, we always managed to take care of it at home.  She was proactive with breathing treatments and calling pulmonary for a steroid if his lungs sounded diminished.  She started putting him on his tummy within a few weeks of being released from the hospital, so he could strengthen his head, neck, shoulder, and tummy muscles.  He hated it!

It took some time for us to get into a routine, but the boys loved their little brother right away. One day when Toby's alarms were going off Conor said, "It's okay, Mom, the nurse will get it!"

A passage of scripture that I have clung to over and over, and I know I've shared it before on this blog, but it begs repeating is Psalm 40:1-3

"I waited patiently for the LORD; And He inclined to me and heard my cry.  He drew me up out of the pit of destruction, out of the miry clay, And He set my feet upon a rock making my footsteps firm.  He put a new song in my mouth, a song of praise to our God; Many will see and fear and will trust in the LORD."

There have been many times that we have had to wait patiently to see how God was working.  While Toby was in the PICU, we were in a pit of destruction - the miry clay...sinking in sadness and despair, wondering if Toby would make it to his next breath.  He has drawn us up out of that pit many times, setting our feet upon the rock, and giving us a new song.  This song is different than before - changed - because we are different, we have changed.  I'm so thankful we have that new song to praise God for his faithfulness.  I always say, every morning God's grace and mercy pours out on my heart, so I can face a new day and take those firm steps of faith, that no matter what will come - He will be with us - every step of the way.