Going Home

The days and weeks are becoming a blur... 6.5 weeks in...

The week of March 9th presented us with an alternative to getting the IV diazepam approved for in home use... {Thank you to everyone who reached out to connections and tried to figure out how to get us IV diazepam!!! Team Eli community is a strong & well-connected one!} The new idea is a PCA pump with ativan, which administers continuous pain medication of ativan - cousin drug to diazepam. It also has the option to push a button and administer a bolus dose of ativan in times of more pain. This option sounds ideal for several reasons: easier to administer in the home, not breaking into his central line as often as we are in the hospital, and the continuous drip hopefully won't make him as sleepy as the bigger doses have been making him.

And... this PCA option got approved by insurance! We got word that this idea would be covered with our hospice supports during our care conference last Thursday (3/12). So that day we switched our doses of IV diazepam to ativan... That evening/ night was rough, but he settled down the next day. The change was not as rough as I thought it would be - praise the Lord!

The next hurdle is how to give continuous doses, since it isn't compatible with TPN (his nutrition that is put through his central line 20 hours a day). The first idea was a surgery to make his line a dual line... he was scheduled for surgery at 12pm on Monday March 16th... but that was halted amid the COVID19 procedures that are changing daily at the hospital. Eli is already at a higher risk for surgery with his virus/ cold & diagnosis, so the amazing palliative doctor was trying to think of another way... and that morning they figured out with Journey Care hospice that a PCA pump can be run through a Sub Q needle... This needle is something that is similar to what people with diabetes use and needs to be changed every 3 days. This needle/ pump can't be set up in the hospital, but we were able to set up continuous ativan through a peripheral line yesterday (3/17).

Celebrating a birthday in the hospital (2nd year in a row!) is never ideal... but the PICU team has definitely become people we hold close to our heart. They all made Eli feel tons of love on his birthday!

The plan for now is to go home tomorrow (3/19)... I get nervous even typing it, but the more people we have praying & thinking of us, the better! Let's get this superhero HOME!

Praises:

• The team working with Eli is just amazing... they are making very smart decisions, sometimes very quickly. Eli's disease and symptoms are rare, which requires a lot of thinking outside the box... like a PCA pump with ativan!
• Birthday fun and all the love from family & friends... watching singing videos made our day!
• "The Quarantine"... we definitely want to take this seriously, and we want to be home to self quarantine... I am going to be looking at this time as positively as I can... and I can't wait to be home with my family!!!!!
• Discharge planning

Prayers:

• Transition to home & setting up hospice care
• Inserting first Sub Q needle (hospice nurse will be doing this), learning all about this PCA pump, and that the PCA pump with ativan continues to be a solution to resolve his pain
  
  

MDA Green Day & St Patty's fun!

PT fun at the hospital... Eli really enjoyed a good stretching:

New song from Vertical Worship ♡ Every word speaks perfectly to how I feel about our journey.

https://www.youtube.com/watch?v=GefPVxycO4E

Lyrics:

I'm standing on the edge of, everything I know
Comfort is behind me, I've got to let that go
There's freedom in the free fall, when I'm falling into you
God knows where I'm going, maybe I don't have to

I lay me down at the altar
Over and over, over and over
From fear to faith, I surrender
Over and over, over and over

You take all my questions, as they're wrestled to the ground
Patiently You guide me, You're so good, beyond what I see now, oh
I don't have all the answers, trust is what I need
My comfort is in knowing, You're right here, You're right here next to me

I lay me down at the altar
Over and over, over and over
From fear to faith, I surrender
Over and over, over and over

I surrender, I surrender
I'm letting it all go
Because I trust You, I trust You

I gain it all in the letting go
So I let it go, You are in control
I find my life when I give it up
So I give it up, I can trust Your love
I gain it all in the letting go
So I let it go, You are in control
I find my life when I give it up
So I give it up, I can trust Your love
I gain it all in the letting go
So I let it go, You are in, You are in control
I find my life when I give it up
So I give it up, I can trust Your love

I lay me down at the altar
Over and over, over and over
You take me, God
From fear to faith, I surrender
Over and over, over and over
I'll sing it again, sing it again
I lay me down at the altar
Over and over, over and over
From fear to faith, I surrender
Over and over, over and over

I gain it all, I gain it all
I gain it all in the letting go
So I let it go, You are in control
I find my life when I give it up
So I give it up, I can trust Your love, oh

We trust in You, God
Oh, we trust in who You are, and in Your plans
You hold it all, so I lay it all down

I lay me down at the altar
Over and over, over and over, yes
From fear to faith, I surrender
Over and over, over and over

How do we get home?

There is still not a clear answer to this question... We could write a novel on all of the moving parts and people working to help us get out of the hospital. To keep it short and simple: there are still a few options that need to get sorted out.

Here are a few updates from the last couple weeks:

• Week of Feb 24th was a lot of waiting around until the Botox procedures... he was starting to feel better from his cold... we did 2 changes to his IV diazepam, which ended up being too much too fast... so we had to go back up on IV diazepam
• Feb 28th: Botox injections - in saliva glands and stomach... post procedures he was very sleepy. He slept most of the weekend recovering (and probably also getting used to the higher dose of IV diazepam again). TBD if the procedures actually helped - even harder to know now that he is sick.
• Monday March 2nd was a sad day... we moved to the Peds floor... most would think this is a good move; however, we have gotten pretty comfy in the PICU. Everyone knows us, each nurse only has 2 patients, we know the doctor teams, they know Eli's story and our goals for this hospital stay, and we feel that Eli is watched much closer in the PICU. 
• On 3/2 we also tried another lower dose of IV diazepam... so it was the perfect storm also being on the Peds floor. Tuesday night - Thursday morning (3/3-3/5) were rough. Eli was showing again that this lower dose of IV diazepam was not enough for him. Wednesday he went back to his last comfortable dose... and it took some convincing (OK maybe some yelling) and some help from the inside to get his PRN IV diazepam doses going over night Wednesday night to help it build back up in his system. By Thursday afternoon he was back to being comfortable!
• BUT... Wednesday he also started getting junky again... and was tested again... and Thursday we found out the Peds floor also gifted us with the Rhino virus, another cold.
• Thursday night he was really struggling to breathe - needed high flow oxygen and was moved back to the PICU... everyone was sad to see us back, but we were relieved :)
• Friday 3/6 Eli was continuing to struggle to breathe (he was breathing really fast and hard and not saturating enough oxygen)... so he went on on a RAM cannula Friday night... which is noninvasive ventilation. He responded really well to this, and will work on trying to wean off of the RAM and go back to high flow oxygen today (3/8).

We had another care conference on Thursday 3/5 with our palliative support teams at the hospital and for home to really start talking about our options for IV pain medication at home. The team has decided that due to his needs to keep him comfortable, we have qualified for hospice care. This will hopefully open a door somewhere to help us transition to home. At this point, we are still at the hospital because we cannot yet get IV diazepam or other IV pain medication at home... and the longer we stay here the more things he keeps catching. So there is a lot of people working really hard on the paperwork and approval of medications for us to try in the home. We have another care conference on Thursday to see where things are shaking out at and continuing talking through support for Eli.

Eli's birthday party was supposed to be yesterday (3/7) so Nate & Meg are in town... and Ava finally got to meet baby Axel! She's only been waiting since the day he was born. She is in heaven.

Praises!:

• Everything that everyone is doing to help us meet our family goal of having a comfortable Eli at home!
• The continued support from family and friends with Eli, food, and encouragement
• Prior to the cold, seeing some smiles and giggles again
• Being back in the PICU :)
• Making more time for Eric, Ava, and I to be together lately

Prayers:

• Finding a solution for IV pain meds at home