A little more vent support…

On Saturday, the pulmonologists finally came down and met with us in CICU.  They watched Ellie breathe, checked on all of her stats, and talked to us about the goals for her.  Ellie is laboring some with her breathing (retracting significantly, flaring nostrils, etc.).  They suggested that we go back to giving her ventilator support through the night.  We talked about a few different options and we said that our ultimate goal was to lower her pulmonary vascular resistance (PVR) so that she’d be eligible for surgery soon.  With that information, the pulmonologists were sure they wanted to give her vent support through the night to allow her to rest.  We don’t want her working any harder than necessary, of course. 

Today, the pulmonology team decided that they’d keep her on the vent MOST of the time, giving her windows through the day on the artificial nose.  I was very confused why we were going back on vent when I thought it was such a good thing to be off of it.  They said that Ellie can definitely handle being off of ventilation, but her CO2 does increase some while she’s on the nose.  While it’s still in an acceptable range, it’s not in an ideal range.  The attending physician explained further that an increase in CO2 can cause her to have slightly higher PVR.  Since PVR is the determining factor for surgery in the future, we need to do everything we can to keep that as low as possible.  So… back on the vent it is for Ellie.  They assured me that going back on the vent would NOT cause her to regress into NEEDING the vent.  That’s good, then, I guess.  

So – that means we have to kiss the dreams of cardiac step down goodbye and revert back to the plan of going to the TCC before going home.  We were hoping that the artificial nose would be sufficient day and night, but that’s just not the case.  It looks like we’ll be going home with a ventilator… whether we can have it set to vent or CPAP at night is still up in the air… something we’ll sort out in the TCC.  We were supposed to go to the TCC last week… they didn’t have open beds there.  We were hanging out through the weekend with the hopes of going today… and they just told me that’s not going to happen, either.  Dr. Hirsch came by to let me know that he has Ellie’s next heart cath scheduled for Friday morning (excited and nervous about this).  So when the attending told me it’d be another day or so before we could move to TCC, I let her know that we’d be back up in CICU after the cath anyways… so if it didn’t make a difference to the unit or staff, I’d rather not shuffle around too much.  It seems silly to move to a different unit on Wednesday only to be back up in CICU Friday morning.  That really works against the continuity of care I’m striving for.  Although… I’m really ready for visitors (it’s now been 5 weeks of flu restrictions) and I’d like to be able to eat in our room (not okay in the ICU).  But hey – it’s not about me at all.

It also means that we're really thinking more about home nursing care.  We knew that we'd be going home with at least 8 hours a day of nursing care... if we go home with a vent, we'll have more hours every day of nursing care.  I can't begin to tell you how uncomfortable that makes me.  I was uncomfortable with the initial idea of having a home health nurse come to our house twice a week.  As it turns out, we fell in love with our nurse and our boys are crazy about her.  But that was someone who was only in our house 2 hours a week... I'm really anxious about having nurses LIVE in our house.  We're essentially going to be adding 1, 2, maybe 3 new people to our family... people that will be in our house while we sleep, people we won't be able to travel without.  So, naturally, that's making me a little batty.  How do you pick a new adult to add to your home?  I hope we come upon some very nice people relatively quickly.  I've heard from others that it can take a while to find someone who really "meshes" well with your family.  Goodness, it's like finding a new sitter or a new daycare... but this time, the person has to be well-versed in trach care and will pretty much be responsible for making sure that Ellie is breathing safely at all times - kind of a big deal.  Plus, it has to be someone who gets along well with the rest of the family, because let's face it, those little boys are going to be very interested in a new face.

This past weekend was pretty busy.  Our boys weren’t down here, so we did more training on Ellie’s trach stuff and managed to get some errands run.  On Sunday we headed home to get projects at the house outlined before we head home (whenever that may be).  We also had attended a volunteer’s dinner at church and were able to see so much of our church family that we haven’t seen in 2 months… which was pretty emotionally overwhelming… in a good way!  While we were north for a day, my sister and niece came down so that Ellie wasn’t by herself all day.  I had to break some rules to get my visitor list changed for the day… and I really doubt they’ll let me change it again, but it was nice to have someone to cuddle our bug all day.  I think Tracy was a little caught off-guard when she saw Ellie.  First, she’s a chunky monkey… so much chunkier in person than in pictures – and way cuter in real life, too, I must add.  Second, Tracy had heard me talk about how unnatural the silent crying was, but until you see that first hand, I don’t think you can comprehend how pitiful it is.  Today marks a full month since Ellie got her trach, and I’m starting to get used to it.  Getting “used to” something is nothing like “being okay” with it, though… let’s be clear on that.  Finally, when Ellie is awake and has the “nose” on her trach, she needs suctioned a lot – as in, 4 or 5 times an hour.  So that’s different if you’re not used it it, too.  She’s usually more comfortable while she sleeps, but works up a lot of stuff when she’s awake.  Tracy and Georgia held Ellie and even helped her color a picture for us.  Amazing!  Here are a few pictures from their visit.

Smiles with Aunt Tracy

Checking out Georgia

Aunt Tracy helping Ellie color

Today Ellie did amazing during occupational therapy.  She raised her hands up to reach for a toy (first time doing that) and even tried to roll a little.  She was full of smiles for the therapist which had both of us adults laughing hysterically.  She showed how much she likes to gnaw on her thumb and worked on head control a lot (not very successfully).  It was quite the workout for her.  When OT was done, it was time for Speech to come by so we could practice bottle feeding.  At first, Ellie was interested in the bottle and happily moved it around and gnawed on it.  She didn’t actually get ahold of it and eat, though.  This is something we’ll continue to work on so that someday, she’ll again be able to eat by mouth. 

The next step: a heart cath on Friday.  We are praying and hoping and wishing and pleading for results that show that her PVR is lower than it was during her last cath on December 3^rd.  This would give us a glimmer of hope that Ellie is responding to her trach and PA band and that she may be eligible for surgery down the road.  We know it’s unlikely that we’ll see a big change right now, but any improvement is good news.  I would have never imagined that God and I would have so many conversations about pulmonary arteries and resistance and blood pressure… but we do… several times a day.  Right now, though, I have to give praises.  I am thankful that Ellie is able to gain weight and feels pretty good, I have to be thankful that we have good food and shelter down here and the best possible care for our baby.  I’m thankful for a reliable vehicle and low gas prices (although I know they’re not a good sign, long term) because Brandon is driving 3 hours a day.  I’m thankful for our family and support system.  I’m incredibly thankful for how healthy the rest of our family is… it’s amazing how health is something we’d always taken for granted.  We’re thankful… for so much… for all of you… for all of the prayers… for all of the blessings being showered down in the midst of this crazy adventure. 

Here are a few more recent pictures of Ellie and her daily adventures:

Pretty little bug sleeping in her Baby Sister shirt

Checking out her therapy chair

Puffy little hands

Raspberries from Daddy

Stunning in jewel tones today.  Ugh - I can't hardly stand it.

We had several staff members ask to take her home today ;)

This sitting business is hard work... puts her to sleep every time.

She absolutely loved OT today.  She was full of smiles and showed off by batting at toys and reaching for things.  We worked on head support... which is always very challenging.  She was trying to look at me for part of it, but her head kept bobbing, so her eyes were going all over the place.  It was quite funny.  She was tuckered out by the time we were done.  She's giving the therapist smiles here.