A Bump in the Road

We hit a pothole, a hurdle, got a flat tire, found a bump in the road or something like that.  Over the weekend we noticed a difference in Keller's breathing, his general ability to be comfortable without being held, his vomiting increased, he was sweating all the time especially when his milk was being infused into his belly and he had started having a dry cough that turned into a nasty cough quickly.  Basically if he was awake, he was crying.  The cardiologist had mentioned to call if anything changed from when he has seen on the previous Monday so we thought he needed to know.  I called and left a message with his nurse and started packing while we waited from a call back just knowing he needed to be seen.  Sure enough his doctor called back and said we needed to go to the Emergency Dept at Vidant.  He expressed to me his concern that this change could mean surgery would be needed much sooner than the 5-6 weeks we were tentatively thinking, as in by the end of the week sooner.

Being checked out in ER.

ER: Trying to find veins

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As soon as Phillip got home we drove to Greenville, the emergency department knew we were coming and had a team of 11 people there waiting for us.  They tried to get labs but had a very hard time getting labs or an IV because Keller has difficult veins.  The on-call cardiologist came and with tears in her eyes told us that Keller was very sick.  At that point she didn't see how Keller would go back home before having surgery. She started him on IV medications similar to those he takes at home.  These are more potent and more effective.  They did a swab of his nose and did a chest x-ray that showed just how congested Keller's chest was.  His body was working so very hard.  She told us that his reflux could be being caused by his heart failure.  Sometimes when the organs are full of fluid their bodies say "No more!" and get rid of the food.  (This was the first time I had heard this and it made me feel much better.  I had been so afraid that the vomiting was something we could possibly have to deal with while Keller was immediately post op.  I couldn't imagine him heaving and retching with fresh chest wounds). They got us to a PICU room pretty quickly and there they attempted another IV more labs and a central line, most of which were unsuccessful.  Overnight we found out that Keller had rhinovirus.  The attending MD said that to most of us this is just a cold, to Keller it's a lot more.  In the morning another cardiologist from the group rounded and told us that because of the rhinovirus Keller's surgery would now need to wait 3-4 weeks to recover because of increased mortality rates.  "Increased mortality" are not words you want to hear, ever.  We found out later that a boy who had open heart surgery before they knew he had rhinovirus took an additional 2.5 weeks to come off of his breathing tube.  No, thank you!  They started giving him room air through a nasal cannula.  It isn't standard O2; it's room air being forced into his lungs to help open them up to improve ventilation.  This, coupled with the medications, should remove the fluid and allow Keller to breathe easier and more effectively. 

Later yesterday the cardiologist I had originally called rounded and spoke with us some about Keller's case. He told us that after he and I had talked on the phone he sat and talked with the cardiologist that met us in the ED. They spoke about how sick Keller is and how he needed to not be on a breathing tube at this time because of how difficult it would be to get him off of it.  We talked about how close a line we are walking with Keller. So close that a "cold" pushed him off the edge. That really has hit home with Phillip and I. We knew we would bring him home and that he would deteriorate but we were not aware of how close the Keller we know is to the very-sick-needs-to-be-hospitalized Keller. It amazes us that we have been teetering along a tightrope unaware of the light breeze that would push us off.  In order for Keller to go home before surgery he has a checklist of things to do.  1.) Get off of IV medications and IV fluids 2.) Tolerate his tube feedings and oral medications 3.) Get off of the high flow room air and back to regular air like you and I breathe.

Keller had a "good night" last night.  This means he slept, his oxygen saturation levels didn't cause them too much worry and he must not have cried as much as he has been.  Today he was bright eyed when we got here (we stayed at the RMH).  He gave me a few half smiles and has snuggled in to his little silkie blanket. He is getting more food through his tube today and should reach his goal rate either today or tomorrow. Once he reaches his goal rate his IV fluids can be turned off and they have started some of his regular "oral" medications back though he always gets them in his tube. He is still depending on the air a good bit so I don't know when he will get off of that. They started another diuretic today so maybe more fluid will be removed and his breathing can improve more.   

More alert and responsive today.

The most frustrating part of it all.....I'm pretty sure he got rhinovirus from a doctor appointment.  We haven't been anywhere else.  Norah has a stuffy nose and I do as well. We all went to Keller's follow up appointment on Thursday and judging by what we've researched about the incubation period of rhinovirus it takes about 4 days for your body to succumb to it. Thursday to Monday is pretty close to that 4 day mark. My mom also went with us and she has stayed well but after 20+ years of teaching preschool you could probably drop her into a rhinovirus lake and she would be fine.  Phillip has it now so the rhino got us all. 

So onward we trudge.  We aren't sure of any timelines at all right now.  We suspect in a month we will be at Duke for surgery and we also suspect sometime between our release date and surgery time we will be at Duke for a consult and imaging.  Thank you for your overwhelming response on Facebook of flare prayers and encouragement.  The past few days have been really scary, tear-filled and heavy.  But Phillip and I have both had several moments that God has "winked" at us.  Yesterday Phillip was able to talk to a discharge planner about what God was doing in her life and later we talked with a respiratory therapist about God and discipleship and being on a journey like ours with God at our side.  It's pretty crazy how He works.  But it's also scary sometimes the things he lets us go through to show His glory.  We pray that His intention is to let Keller move through this hiccup as well as open heart surgery and come out of the other side as a testament of God's goodness.  We pray for him to truly recover from the rhino - he needs to be able to wait the several weeks before surgery but if his heart shows that there is no more time it could force their hand to do the surgery sooner.  We also pray for no more setbacks; his body is telling us that he is in the short rows now in regards to surgery. Thank you for your continued prayers, he is special to us and it's so nice to know he is special to others as well.