Selah's Update

 January was our 9 year anniversary of bringing Selah home from the hospital on 24/7 nursing.  The first 6 months were really hard for us back in 2013  We had the bottom of the barrel nurses for the most part cycling in and out of our home, many who did not even bother to show up for their shifts.  It caused so much stress.  Then after a few months home our own Mary Poppins of nurses came.  Everything changed... Selah stopped being in the hospital for bi weekly problems and infections.  Our nurse Rose taught everyone how to properly take care of Selah.  She was able to tell a nurse friend Kathy about our case and  then she began working with Selah.  Then Lexion who had actually worked a few weeks in the first month or so came back from a medical leave and began working again and Selah's core team was set.  Those three ladies kept things on track and Selah thrived.  They kept the shifts covered and worked together as a team.  Occasionally we had other nurses for a season.  Some I let go some were here for experience before taking other jobs. (one of them is now a head nurse supervisor at our local hospital!)  Through the different changes we remained staffed which is necessary for our family as we have Sam and Sarah!  With Jon working full time in the prison as a Chaplain and also as a pastor we didn't have much of a fall back plan if we did not have full time nurses.  We do get some respite hours for Sam and Sarah but that's not something we have on a regular schedule due to our dear caregiver's other responsibilities plus we only have so many hours although we have request more and will be having hearings to try and make that happen.  (Unfortunately we have to have a hearing because we were denied and in Sam's case all his hours he has now has been taken away!!! Yep! I am furio0us but that's another story)

In 2021 we had a major problem with nursing care.  The agency began only allowing so many hours of overtime for our nurses but they were not sending any new nurses to fill in those hours.  It came to a head in April and I had to call Tallahassee and everyone I could think of to require them to fill our need as one nurse was going out of town for a few days.  We had everything settled and approved prior to the problem but all of a sudden the agency changed everything.  Although I got that all settled it literally took two days of me working on it and too many emails and calls to count.  At the same time I was dealing with a medical problem of Sam's. Selah's needs have changed in 9 years and so have Sam and Sarah.  In stead of things getting easier they've actually gotten harder as they have aged.  In the very beginning I could still care for all three of them because I had Steve & Shad home to keep their eyes on Sam and Sarah.  Well those days are over and there is no way I could safety care for all three at the same time.  

So after that horrible situation in April I realized what many people were telling me was true that we had to find a safe nursing/group home for Selah.  I'd been resisting for a couple of years, holding out hope we would get new nurses as all three of our nurses were retirement age with one being in her middle 70's,   The only thing I could do was pray.  My emotions were all over the place, I was sad scared for Selah angry as hell at our nursing agency which is a hot mess!  I tried getting a new agency...no one could provide nurse for 24/7 care.  I worked with our insurance and got permission to split the case with another agency but that didn't work out either.  One day a friend called and told me about a new small group home in our area....something told me that was the place for her as soon as I heard about it.  

So then I began researching and finding out more.  Everything I found out I liked.  Then the group home had to go through more qualification to take Selah since she is only 17.  They did so much work to be prepared to accept her in.  It was very emotional for us.  I backed out several times in my mind and even a few times out loud.  We had some very sad moments.  Every time Shad and Steve were home spending the night I'd think "is this the last time we will all sleep under one roof?"   Believe me that just broke my heart!  It's been incredibly hard for Jon.  Many times as we would hit snags with various agencies/regulations I just prayed that if it was not the right thing to do that it would just not work out.  It took 9 months to go through the process.  For us that was needed it helped us to cope with the decision and come to terms with it.  Also there were other issues with the agency along the way that made me see that sustaining nursing care in our home 24/7 was going to be impossible.  

The group home has only 6 patients per home (they are expanding in the Tampa bay area)  It is actually a home in an upscale neighborhood that has been remodeled.  There is no institutional feeling about it.  It never smells - I've gone in at all different times and it's well staffed.  They have several amazing components.  The group home has full time respiratory therapists around the clock.  They have a doctor on call who comes in weekly and they can do so much medical things in house.  That is huge!  

So last week the day finally came to move Selah.  It actually went off without a hitch.  She has done marvelously and the group home is working hard to maintain her normal schedule.  They have been very gracious to us and her.  Saturday we got the last of her things moved over, and I was able to just relax with her outside for awhile.   It was not as hard as I thought it would be.  We've gone over often- this week will be a challenge but tomorrow I'm combining a doctor's appointment for Sam with visiting Selah.   We want to see her several times a week.  The nice thing is when I'm with her the focus is completely on her.  Saturday I was able to connect with her in a way I have not been able to in years  The pressure of nursing care is off my shoulders.  Even when things were going good there was the stress of worrying if something might happen.  Having just one nurse out for an extended time would have wrecked our whole thing.  It was a very fragile and stressful thing.  Honestly I knew I was stressed but I didn't actually realize the depth of it until now  If I had not had the three nurses who were such a team we could have never gotten as far as we did nor been able to last as long as we did!  Two of my nurses are basically retiring although they may take a shift here or there for an agency.  One has transitioned to work full time for a friend of mine.  

So keep Selah in your prayers and us also.  Our home seems so empty with Steve, Shad and now Selah gone.  It's weird for us we are used to so many people being here and so much going on all the time.  I plan on being very involved in Selah's home.  We already have some ideas  in the works for some volunteers.  One thing we have always done is fully embraced life where ever we are at....whether it was at the Ronald McDonald House, in therapies,  the kids' private school....whatever it was we joined in and helped out.  This is no different.  We will be a full part of Selah's life now as we have been since the day we met here almost 10 years ago.  

Selah has the best view out of her window.  There's a duck pond that's just beautiful.  

Saturday was so special.  I have not seen Selah so engaged in years.  She was calm and relaxed.  We stayed out for 1.5 hours.  I ended up just sitting on the ground beside her.  Now I've added a little chair to the back of my van for our next outing!  My legs were numb when I tried to get up!  I was a bit worried - thought they might have to send out a nurse for me! 

I know people may be mean about this or say we are abandoning Selah.  One of my closest friends told me not to tell anyone because she was afraid people would be hurtful   But there is nothing wrong with knowing your limitations and wanting to ensure your child is safe.   There are few beds in Florida for young people with traches , most are literally hours from our home.  If or should I say when our nursing plan fell apart we would have had little choice in where she would go.  And she would have had to go into a skilled nursing facility.  Her care is very involved far more than we can safety do.  There is no shame in taking the best care of your children even if you can not personally do that care!  So if you feel inclined to be critical please tell me how you've cared for someone who is as medically complex as Selah for almost a decade in your home.... while taking care of two others who also have complex medical needs....I didn't think so....

We have come to have peace with this decision.... ironically as I was leaving her the first day I got a call from our nursing agency.  Evidently some of the folks we were dealing with who seemed to go out of their way to make our situation harder than it had to be were either fired or they left on their own  The new director was making me all kinds of promises  I told her I'd called the corporate office on numerous occasions to share what was going on and not once was it dealt with nor did things change and we could not live in the limbo that their agency was creating.  We certainly could not trust her word that things would change.  I told her to put her effort into the families they have on their books.  Give them the help they need and treat their good nurses fairly!  

I pray for every family who is facing this dilemma.  As we age and our kids age it is scary!  The past decade has hit both Jon and I hard.  Being in our late 50's is so different than being in our last 40's. Nothing like a few surgeries and a heart attack and open heart surgery to remind you of limitations!  It's a hard part of parenting special needs kids/adults.