Hostipital

When Conner was little, he used to call this place the "Hostipital".  He was two years old when we all were thrown into hospital life, and that was over nine years ago.  Nine years of survival mode, with a few breaks in between.  This has become our life, and our ministry, our family's mission.  It's also become the life of our children.  For example, Henry wanted his third bday party to be here in the hospital cafeteria, and so we made that happen for him!  Conner and Henry find peace here because it is familiar, and because people know them here.  They also absolutely LOVE the cafeteria and getting to choose what they have to eat.  


PEACE.  I'm grateful that the boys feel at peace, at home here.  This place very much felt like home for so long, but the longer we are away, the less it feels so familiar, and understandably so.  For those who don't know, Ellie Kate spent most of her life here at OU Children's.  She had long stays and shorts stays.  Ellie Kate absolutely loved it here because everyone here made her feel loved!  She wasn't scared to come here, and neither are the boys.  


Obviously, we've been here to OU for many, many doctor appointments, bloodwork and tests since Ellie died, and each time is hard, although I must say that is has become more easy.  It's easier because we are OUTPATIENT, and I know we are just there to visit.  We've tried our best to avoid hospital admission for Lucy since EK passed away, but it has happened a few times.  Thankfully, she hasn't been in-patient in over a year!  That is a miracle to us, because it never happened that way with Sweet Ellie.  The same smells, sounds, art work, vending machines, and even people - they are all so comforting and yet this time, I have been completely overwhelmed, and not in a good way.  I'm just fighting the overwhelming feelings and anxiety.


Lucy is in the hospital because she is having trouble with her feeds.  She has been screaming each time we try to feed her anything through her gtube, and she isn't able to sustainably eat or drink by mouth.  Her screams of pain over her belly are haunting because it's the same way that EK would cry over her tummy.  Most of Ellie Kate's stays here were because she couldn't handle her feedings.  Either she couldn't keep them down or they hurt her too bad for us to give.  So, like EK, Lucy's been receiving fluids through her port (thank you LORD for her port, so that we don't have to worry about an IV!!).  Yesterday, Lucy started tolerating pedialyte on a very low rate, through her gtube.  That means she gets a little bit of it constantly through her belly.  Last night they were able to bump the rate up a bit and she responded really well!  We plan to introduce formula today and we will not leave until Lucy is able to tolerate what she needs to survive and thrive.  


Lucy's had to have several rounds of pain meds, sometimes heavy meds, because the pain has just been THAT intense.  Watching those tears stream from her eyes - almost every movement and motion exactly like those of her Big Sister . . . I cannot even begin to express what that is like.  Holding her yesterday, I sleepily glanced down and saw Ellie Kate in my arms.  They are THAT identical at times, especially in this setting. It takes my breath away and causes extreme anxiety this stay, which I hate to admit.  Having our entire family up with us last evening was precious, special and it needed to happen, and yet it was so surreal.  We ALL felt it.


PTSD is REAL for parents like us, I have no doubt (and grandparents too, I believe).  Different things can set it off such as the smell of the same soap used in the hospital where you've been, different art work you've seen while there, etc.  Sounds and smells can set you off even outside of the hospital, so BEING here physically, for the SAME things that Ellie struggled with her entire life, has been emotionally overwhelming; mentally overwhelming and exhausting, and physically as well.  I know that might be hard for you to understand or maybe even hard to believe, but it is the absolute truth.  Bottom line:  Ellie Kate passed away because her gut shut down and stopped allowing her to be fed, receive nutrition, process foods, etc.  There were other things that happened shortly after and alongside of that, but gut-issues were the main cause of her last down-turn which quickly led to her death.  Lucy is stable right now, but because of the history . . . well, THAT is why this is so incredibly intense, and I find myself in full-on grief sickness once again.  

All of that being said, I've been doing my best to stay on top of it all, but I know that I haven't returned calls, texts, emails, and FB messages.  I just haven't been able to do it, Ya'll.  Lucy's been screaming so much and up until now, has required complete attention in every way.  We are working extremely closely with the doctors, whom we love, as they are allowing us to choose steps and make decisions along the way.  I LOVE that they are listening to us as we use the knowledge we have received living this life for so long - thinking of ideas, running through what has worked and hasn't worked for Ellie Kate and for Lucy in the past - those things wear you out too, although I wouldn't have it any other way.  I'm grateful that they trust us, and we are blessed to have a great team!  I pray that you have grace and understanding and will see that if we do not respond, it isn't because we don't love you or are not grateful for your outreach!  WE NEED the outreach and encouragement!  I personally thrive off of that in times like these, sort of like a team.  When you are down on your back or are struggling, you look to your team mates to step in and step up, verbally and physically encouraging you along the way, as you make it through the mud, muck and quick-sand.  THANK YOU for CONTINUING to do that with us and for us!  It means more than you could ever know.  


Right now, I'm in the waiting room while Henry is back for his sedated MRI.  We may or may not receive results from that today, and I'm not letting my mind run to the "What ifs" where that is concerned.  I have enough - I'm not meant to carry that as well.  God's got it worked out for Henry's good and for God's glory.  We hope to also receive the results of his sleep study (done Monday of this week), and again I am choosing to give the results up to the Father as he knows exactly what is going on in Henry's body and brain.  


Would you pray for PEACE?  We need God's supernatural peace, the peace that HE has promised, to flood us.  I mean, I want to feel it SO incredibly thick that fear seems an eternity away!  Also, please pray for Lucy's gut to start working again.  My fear is that this is the beginning of gut-trouble and hospital stays to pattern the life of EK, and I'm choosing to give that all to the Father right this moment.  It's too much to handle or hold on too, especially when He controls it AND wants to take it off my shoulders.  Please pray too for PAIN RELIEF for Lu Lu.  

Other ways to pray: 

• for clear and quick results for Henry's tests and for wisdom for the doctors where he is concerned.  
• Pray too for Conner because although he doesn't express it, I know all of these things must weigh heavy on his heart, even if he doesn't realize it.  
• For me and Mike - that God would protect our hearts and guide and capture our thoughts; that He would continue to heal us and comfort us even though it seems impossible to do that here:).  
• for our parents, as they hurt for us and hurt for our children
• for God's provision 
• for Mike as he continues (and desires) to work hard at his job (which he loves), and that God would allow him to concentrate on that when he needs to.  

Thank you for being there for us, Friends.  Thank you for loving and serving us.  Thank you for understanding, for staying alongside, even when we cannot respond or reach-out.  I will update as I am able.  

From the Hostipital - 

Ryan