Bad days can get worse...

As my mom wrote yesterday, things have been stressful to say the least.  Shawn and I slept at the hospital last night in one of the parent rooms.  They must make these rooms intentionally uncomfortable to keep you from wanting to move in!   Sleep was limited, but were thrilled that Hope stabilized a bit more through the night and we didn't have another close call.

We are blessed that our little one is still with us, but we have a long way to go.  This afternoon, an echo was done that showed that the blood flow in Hope's Superior Vena Cena is not great.  They can't see an actual clot there, at this point, but are sure that something is obstructing the flow.  The obstruction may be outside the vessel, but they aren't sure what it is at this point.  The echo will be done again in the morning. If it looks like the flow is still not as it should be, they will order a CT scan.  They are hoping not to have to do a CT scan on Hope as the radiation is high and pretty intense for her little body.

One of our major dilemmas right now is Hope's IV lines.  The IV in her head collapsed this afternoon and we are down to only one line in her hand.  This line is looking red and likely won't last too much longer.  They are talking about putting in another central line.  This is a very unsettling idea for Shawn and me. What if she clots again and we aren't as fortunate this time?  Both central lines she's had have caused an infection, why wouldn't this one?  We feel very uncomfortable with another central line going in and wish we had a better option.  They are going to try again to put in a PICC line.   It is still a form of central line but is a bit lower risk for infection and clotting.  Please pray that her IV's will stop failing and that her body will not get an infection, or even worse, another clot.  This entire line situation has brought me to tears many times and feels overwhelming as a parent, there doesn't seem to be a good option.

How are we doing?  We're not doing well.  Shawn is so frustrated about being back in Edmonton after tasting the comfort of home for a mere 72 hours.  I am emotionally numb and feeling beat up by all the bad news and set backs.  We're torn between our two kids, as Sadie is still in Calgary.  We miss her like crazy, but aren't sure how to balance having her here and being available for Hope.  My mom is going to need a heart transplant herself if we go through too many more close calls.  We really need a better day tomorrow.  Please pray for some improvement in Hope's condition.  They are talking about the possibility of extubation as they don't feel it's safe to keep Hope extubated because of the sedation that is required.  Hope responds poorly to the sedation and that puts her at risk for a lot of other problems.  I'm nervous about the tube coming out, but also looking forward to Hope being more comfortable.

We're praying our stay in Edmonton is short, but also nervous to return too early and return a third time.  Being in a hotel is good and bad.  We do have a higher level of privacy, but you can't beat the rate at the RMH!  We're on the waiting list at RMH and are hoping we can get a room before too long.  Thank you for praying for us, I honestly feel unable to pray for myself right now and appreciate you all carrying that on our behalf.