6 months – A3.35

When Ellie turned 5 months old, I was so hopeful that I'd be able to write her 6-month post from home.  Not so.  We are still in Cincinnati Children’s – and to be honest, I’m not sure when we’ll be home.  This is why I titled this post with her age and room number again, dang it.  [As a fun tidbit, this is our 10th room at CCHMC.  We've had: 2 rooms in Cardiac Step-down, 4 rooms in CICU, 1 room in PICU, and 3 rooms in TCC during this stay.]

All three kiddos - adoring each other

When the attending pulmonologist saw this picture today, she said, 

"Oh my, you have your hands full."  I said, "Wonderfully so!"

Last week I was seriously bummed, and that’s an understatement.  When we came down to the Transitional Care Center in mid-January, I sat down with the education coordinator and laid out a schedule.  We plotted out all of our trainings and hurdles we had to jump through and set Feb 26/27 as possible discharge dates.  I circled those babies on my calendar and was so looking forward to getting home in February.  Brandon and I pushed hard to get through all of the paperwork, all of the financial hoops, the countless meetings and phone calls, the exhausting list of training tasks (all of which had to be done 3 times by each of us), all while trying to keep our heads above water at work and keep some sort of “normal” family life.  Needless to say, the past few months have been stressful.  We’ve been working to secure home nursing for over 6 weeks now… and on Friday I got a phone call that exceeded my tolerance for frustration.  A rep from the nursing company called me and said that yes, they had secured the 40 hours of nursing through the night (with a nurse that was referred to us by friends), but they were not comfortable sending us home with only 40 hours per week of help.  We needed to secure at least 56 hours of home nursing for them to accept our case – but of course, they have no staff to help fill the other 16 hours – so they are declining our case.  So either we need to find a home health nurse that can fill at least 16 hours, or we lose the nurse committing to 40 hours/ week.  I was so frustrated that the tension built up to my eyes, then spilled over and ran down my face… for hours.

To give you a little background on this nursing struggle – we’ve literally been working on this for over 6 weeks and this is the latest in the dead ends we’ve met.  It's not as simple as having someone who is a nurse stop over as needed.  We have to have a nurse who is trained in pediatric trachs and vents and who is liscenced to be a home health nurse (either with a company or independently).  When we first started searching, our insurance company sent the discharge planner 25 pages of nursing companies within 40 miles of our home.  Each page had 5 or 6 companies listed.  Of those companies, 2… yes, TWO covered pediatric vents.  Over 135 companies to choose from (and call) and only 2 would be willing to work with us because they had the capacity to cover pediatric vents.  Neither of those 2 companies have staff available, though.  Nice!  We received a referral from a friend for a nurse who seems like she’ll be great for our family (huge relief).  And another referral, but that nurse already has a full-time case.  So we had one person.  That one person applied with one of the two companies within 40 miles that our insurance covered.  Two weeks ago, that company’s rep called me and said, “My supervisor said we do not work with your insurance network”.  Awesome - after 4 weeks of work on that!  We found out that the referred nurse actually already works for a company within our network, they just didn’t show up in the list sent by our insurance because the company is 40.5 miles from us.  Really?  So for a week and a half, we’d been pursuing that company, making sure that our nurse would be ready to roll upon discharge.  And then I got the call Friday that they were declining our case.  That’s when the tears were flowing!!

I needed these smiles on Tuesday - a rough day for me, spiritually.

The discharge planner said that in seven years of doing her job, she’s never had a company come back and refuse the case for only having 40 hours of coverage.  Ugh!  Now, we can secure additional nursing hours from another company and have them pair with the other so that we have at least 56 hours before we go home… but that again brings us back to the fact that no companies within our network have staff.  So, yeah – sucktastic!  We have a few independent providers that are interested, but until we exhaust the 60 days that our insurance will cover for nursing care, I don’t think we’ll be able to use those ladies.  Yadda, yadda, yadda… this is the glorious mess that we’re in and why I keep posting about nursing.  Yuck.

On to happier things, though: We were singing praises to God this week.  Ellie had a PICC line that went into her vein in her right calf and the end of the line was in the top right side of her heart.  On Tuesday night and Wednesday morning, the PICC line was a little harder to flush than normal.  During rounds, the team asked if I was okay if they pulled the line.  I agreed, knowing that pulling it would be one less infection risk and we hadn't been using the line for labs regularly like we used to.  Shortly after rounds, our nurse pulled the PICC line out and located a 2 cm clot in the line... about 1 cm from the heart-end of the line.  One more flush of that line and a clot would have been released into Ellie's heart.  When things like this happen, I have to see how amazing God's timing is.  Even when I'm frustrated with earthly timing of things... I have to trust His... He did NOT fail us on this one, that's for sure!

Our boys came down to hang out with us on Monday and Tuesday.  Mom & Dad dropped them off Monday after I was off work and they stayed Monday night, hung out with Brandon during the day Tuesday, and we went on adventures with them once I was off work.  It’s amazing how those tiny arms wrapped around your neck can make everything else just disappear.  It’s amazing how you can snuggle them close to you and nap in the middle of the day without a worry on your mind.  We hadn’t seen our boys in 22 days (they’d been on vacation for a while).  I’m sure that my meltdown on Friday had a little to do with this, as well.  My eyes welled up with tears as those little turkeys spotted me in the corridor at the hospital and came running to jump into my arms.  Oh, how I miss them every day.  They were so excited to see Ellie – as she was equally excited to see them.  We took them out to dinner on Monday and snuggled with them in the Ronald McDonald House.  On Tuesday afternoon, we took them to the Cincinnati Children’s Museum for a bit.  Since we’re supposed to have another snow-pocalypse today, Brandon headed back home with the boys last night so that they didn’t have to trek through nasty weather today.

The boys like to pet Ellie like she's a dog.  It's weird, but adorable!

Ellie was taking a nap with me on the therapy mat.

The boys were coloring pictures for Ellie.  Then covered everyone in stickers.

This is why I'm thankful that Brandon had Tuesday off work.  Not only did we get to do things earlier as a family, he got some much-needed snuggle time with the boys.  This makes me melt.

This week, I was planning on getting photos taken of the kids and I planned to meet with our tax guy to get our 2014 taxes taken care of.  Of course, those things aren’t happening because we're not home.  Today, we are officially 2 weeks out from her next heart cath… praying that we get to spend at least a week at home before coming back for that.  We’ll see. 

Ellie had a great week last week.  She had 8 straight days without storms – a new record for her.  On Monday night (while we were at the RMH with the boys) Ellie had a very low blood pressure, so they held her dose of propranolol (the beta blocker that prevents her from storming).  Of course, holding the preventative drug opens the door for storming, so Ellie had a storm early Tuesday morning – breaking her streak.  I’m not terribly concerned about that.  When they told me they held that dose… I said, “and when did she storm, then?”  At least we know that the propranolol is still doing its job nicely and that it’s still needed.  I know that stressful situations will bring on more storming episodes, so we just need to be prepared for that in the future. 

As we head into this next cath, the cardiology team has said that they’ll do the cath on Wednesday, March 18^th and she’ll be presented at surgical conference on the following Tuesday again.  We are in agreement that if they again feel like the only option for Ellie is a 1-ventricle repair, we will be getting a second opinion in Boston.  I don’t know if Ellie will be eligible for Boston’s program, but they have a new program where they are taking 1-ventricle kiddos and making them 2-ventricle repairs.  The difference between the two repairs means a whole different life expectancy for Ellie… a whole different cardiac future for her.  Again, I don’t know if she’d be eligible for their program… and I don’t know that Cincinnati will come back and say she’s still a 1-ventricle repair, but I have to exhaust all avenues to give her the best shot.  Do I want to go to Boston for treatment?  Absolutely not.  Will I go if they have a program that may give Ellie a better quality of life?  You bet! 

I’m trying not to think that far ahead right now, though.  I’m trying to focus on what I can do and who I can call to move ahead on this going home business.  Oh, how I want to be home.  I’m sitting here listening to her feed pump and ventilator run behind me (she’s napping)… sitting at this tiny corner desk that I work from every day.  Oh, what I’d give to be sitting and listening to her feed pump and ventilator running while also hearing her brothers playing superheroes from their room?  Oh, what I would give to watch them interact with her on a daily basis.  Oh, what I would give to have the whole family under one roof… or cook a meal in my little kitchen… or sit at our own table for a meal together… or just snuggle up on the couch and watch a movie as a family.  I just want “normal”.  This is day 98 for this hospital stay… day 119 of Ellie’s hospital stays since birth.  She’s only been alive for 182 days… so 65% of her life has been spent in the hospital.  Her brothers think that this is where Ellie lives.  So ready to change that!!  I can't compain about this too much, though.  There are families here who have NEVER been home with thier babies... and families here who have gone home after losing their babies.  We're incredibly blessed to be in the position we're in.  We’re taking this a day at a time right now, but getting pretty impatient knowing that she’s medically cleared for discharge, but waiting on the home care stars to align.  Sitting.  Waiting.  Praying.