Chloe Update: Critically Stable

Yesterday afternoon Chloe's team {think 8+ doctors/specialists plus Chloe's Daddy there and me on the phone} had a round table discussion of all things Chloe.

Please read through to the end and absorb these notes we took and thoughts we've had.


Chloe's Condition: Critically Stable. 
Chloe's Prognosis: Somewhere between passing away at any given moment -- 10 years? 12 years? 2 years? 5 years? If Chloe had a Magic 8 Ball it'd say, "Ask again later."

Let's explain:
Critically Stable means she's almost stable enough to come home and try to thrive here and at home and show us what she can do. The critical part means she's always a very medically fragile child. With no cure. Stable means with meds and correct med treatments we have the hope that she might get home and thrive and do well and surprise us all, as she has many other times before when we were greatly concerned. Critical means she is living on the edge and could tip the scale either on the side of something happening and her passing away quickly, or go downhill at anytime, or she could tip the other way, show us she's a fighter, and keep on keeping on. Hence the #becauseitschloe movement.

What this means:
Chloe is a gray zone baby. She always has been, and she always will be. There is no cure for her underlying condition, and there will come a time when her body simply cannot manage itself anymore based on our medical intervention this side of Heaven. But every time she's been thrown a curveball, she has also proven that she's a fighter and usually lands, at some point, back on her feet. Which is a fun little analogy because she's never put weight on her feet, so in a crazy round-about way, I guess that's Chloe's way of showing us she can stand on her own two feet. By freaking us all out, then smiling at us and saying, "Haha! Scared ya that time, didn't I!?" Because she's a cute little stinker who freaks us all out and keeps us all on our toes and makes sure that we know she runs the show. Well, we know that God runs the show, but He lets her think she's getting her way. Toddlers these days...

I digress. Back on track. This means that there's just simply no way to predict how long we'll get to have our sweetpea around. We just don't know. What we do know is that the list of concerns that had us all nervous last year has shifted and changed as of January. We knew this list would change somewhat after heart surgery, but we all never really saw this kidney issue coming on so soon.

Our new list of highest concerns is her fluid balance vs. her kidney function. There are also new medications and new accessories. We'll list them out below:

New Accessory: Port placed under her skin in her chest. We'll be giving daily injections of a drug called Lovenox to help prevent blood clots that could happen because of this port. As parents, we'll have to relearn how to give injections, and potentially learn how to draw blood from this port and flush this port. Please pray for wisdom and knowledge and skill for us. The port gives us constant access should we need it for meds, draws, or emergency situations.

Enalapril: She's had this before for her blood pressure, and our hopes are that it will help her kidney function a slight bit more. She'll be starting it now and we'll give doses cautiously because there can be less than happy side effects, but in her case, it's worth the shot to at least try. We can also take it back off if deemed necessary.

Fluid Balance: The fluid needs to dry up. But the one kidney needs to like how we do this. And at times, it doesn't like it. If we give too many diuretics, then the kidney numbers start to rise, indicating that the kidney function isn't the best/her kidney isn't liking this game. But if we don't give fluid meds, then she gets puffy, and on the days that she's a puffer fish, she's not happy and we can see she doesn't feel as well.

>Unfortunately the two will never play very well together. And because no one has ever made a shirt that says "I Don't Play Well With Others-Said the Single Kidney", we'll have to choose to let her kidney numbers be slightly higher than anyone wants while we try to dry up her fluid issues. The hope and prayer is that she'll eventually get the fluid under control without hurting her kidney. But we all don't really know how this will play out and it could end up that the fluid balance issue is what ultimately takes its toll on her kidney and causes it to shut down. If her kidney starts shutting down, that will be a sign that other organs are starting to struggle, and we'll know that it's time to stop pushing.

>However, at the CURRENT MOMENT her kidney is doing ok. The function is good and each time we're careful to watch her numbers and adjust her fluid meds, the kidney numbers keep trending down, which is what we hope to see. The point is this is GOOD for right now, and we HOPE this keeps up, but we also KNOW that overtime and in the future this could take a turn. Our PRAYER is that this isn't for a long time.

Where we go from here?

We know that Chloe's condition has no cure, but that she is responding to treatments now, so we rest in that and march on. But there are lines where we'll stop.
>No ECMO {machine that allows heart-lung bypass outside the body}
>No heart transplant, kidney transplant. She's simply not a candidate with her list of symptoms. We've known this for some time, and have already said that it's off the table.
>No dialysis for her kidney. This would simply put more strain on her little body and be too invasive.

However, there are some things that are dependent upon what she shows us she's ready for...

>Currently we're taking cleft lip/palate off the current list of to-do's because she simply isn't stable enough for another surgery. However, if she comes home, thrives, rocks it, and weans off her vent and a few other issues that she'll need to prove to us she can do, then perhaps by Fall or in a year or later we'll consider this again. It's not a top priority, and we all know it'd likely push her over the edge right now. But it's not completely off the table. Just is for the time being. It's up to Chloe to determine the timeline for this.

>Heart surgery. In theory, there is one more heart surgery that can be done for her called a Fontan. There are variations of this surgery based on that specific individual's heart. It can be done anywhere from age 3 to even age 10 if needed, but Chloe needs to be more than stable. She needs to be walking and talking and off her vent completely, meaning decannulated for this to happen. This has always been the plan for Chloe, until now. If she's struggling, we will not do another heart surgery anytime soon. If her heart struggles now to the point of needing a surgery now, it is simply not an option. However, if in 2 years or 3 years or more she's thriving and ready, then we put it back on the table. It's all conditional. It's all based on how she is at any given time. Should she thrive and live 3 more years, then it's a strong possiblity. Should she spend this next year struggling, then we know it's not in her best interest. But right now, other than the fluid issue, her heart is actually not our biggest concern.

Chloe's team has also advised with care and concern that perhaps it's a good idea to get Hospice involved now. I personally freaked out when I heard this. I'm not ready to give up on my daughter. But the team explained that getting them involved now means they can get to know Chloe so that they can help with assessments of when we should admit her or make appointments for her because it's a set of eyes on her locally, 2 hours away from her team. They can also help do home blood draws and other medical things that we'd hope to not have to take her to our local lab for to have less exposure considering she's delicate and it's still cold and flu season. They'd be a listening ear and resource for us and our other children. They'd be a nurse we could call at any hour if it's an hour we don't have our home nurse to come and help administer something or assess something.  And if Chloe's rocking is and thriving, then we'd be allowed to sign off on Hospice in 2 or 3 years or so. They explained it's a resource and a branch or a helping hand to our current home health care we receive for Chloe. It's extremely hard for me to wrap my mind around the fact that I might have a child using Hospice simply for the fact that it sounds so doom and gloom. And I've cried daily about this for the past week. But at the same time, this is reality with Chloe and it is a resource and it does NOT mean that death is at the door for her. Using it now does not mean that she is passing now. The world taught me that Hospice is a shady word used when someone is dying at home. The team has expressed that the word Hospice is a resource for those caring for a critically ill loved one at home, whether for a time until they pass away, OR for a time when they are thriving and do not need the resource anymore. We'll talk through this as a family and decide if and when we'd like to get them involved. I urge you to please support our decision either way and at whatever time we choose to involve them, and for the sake of our already overflowing minds, do not assume this means her time has come.

What's next?
With all that said, Chloe is still here. She's still being an ornery little stinker who's smiling and getting up in her high chair daily. She's still kicking and playing and growing teeth. She's still yanking her lines, throwing her taggy, and playing with baby wipes one after the other. SHE IS HAPPY.

So for this reason, we set some goals (icky, icky word that we don't really like. Don't get me started on that stupid "quality of life" saying. There are days I don't get chocolate, so let's just admit right there that no chocolate is a poor quality of life. It's all relevant). Let's call them dreams for Chloe. She had a setback this past weekend with dropping her sats very low and needing higher oxygen. The only reason we can all come up with is that it's a side effect of the anesthesia she had the Friday before. We pray that's all it is and she shakes off these desat episodes soon.

1. For Chloe to come home to thrive and grow and do her best to rock it, she needs to be between 30%-40% oxygen. This is roughly 2-4 liters. We need her to meet this goal for the simple reason that traveling home is not an option based upon need for oxygen tanks that can hold that much. So we pray she keeps her sats happy so that she can keep the need for oxygen at 2 liters.

2. Start the Enalapril and watch it cautiously to see how she reacts and if it helps her kidney. We've got to name her kidney. Just sounds like it deserves its own name, don'tchathink?

3. Get Hematology on board on her team now that we'll be giving the Lovenox blood thinner. Figure out a way to do weekly blood draws at home with a local lab that can get results sent ASAP to the team to check both her Lovenox level and kidney numbers, as well as things like her sodium and potassium based on her diuretic doses.

4. Consider when for Hospice help.

5. Give her two weeks to get all of this in place and to show us that she can stay consistent for several days in a row on diuretic doses and oxygen. Once she can do this, we'll get to bring her home. Our goals  dreams for Chloe are to thrive. Simply do the day in and day out of caring for her while helping her to be comfortable and happy and just let her grow and gain strength. Although she has such a list against her, she's still here and is SUCH a fighter and we're not giving up on her because she's continuously showing us she wants to be here. We do the mundane everyday and make each day count. We soak her up and let her get loved on by her siblings. We love her as best we can, be it snuggles in bed together, reading books, playing, letting her rest, tickling her toes, and on top of all of that provide the best care-giving that we can as far as medically speaking. We do also know that these concerns mean more attention now, which means most likely more hospital stays to be monitored closer for things like viruses or if fluid balance swings, and more frequent appointments to be seen.

We pray for more days with her. We pray that it's the Lord's will that she'd live 2...5...10 more years. But none of us knows. We refuse to let the team talk us into her days being short and numbered because if that's the case, then we would have spent every day that she's been on earth and before she was born thinking we'd lose her that day. We prepare our hearts and minds daily that any day could be her last, but we don't play in our mind daily how to plan her funeral or what color casket because SHE IS HERE. We know that she could pass away at any given moment for any various reasons from her trach to her kidney to her heart to her lungs....but we also know that she is here and God has blessed us with this day with her. And as far as we all know, it could be weeks, months, years, or even a decade. The team always laughs hesitantly with us when we say 10 years because they simply don't think she'll really do that well...but do any of us really, truly know how much longer we have to walk upon the dirt of this earth? No. So we soak up each and every day and make the best of it. And we crack jokes and make light of all of this and hope you don't think that's wrong or mean or a bad coping skill. We do it because at the heart of it, we need to do our best to smile even on the hardest of days. Because we simply cannot frown through every single day fearing the worst. Because my heart cannot dwell daily on the thought that I will very likely bury my precious child. Perhaps this is what it's like when Proverbs 31:25 says, "She laughs without fear of the future." Because I know that ultimately my God is in control and I have to trust Him that much.

And because we are living a life that is loving our healthy kiddos while trying to give the best care possible to a very critically ill fragile delicate child, there are going to be days that we lose it or it's messy or it's hard or we're scared. We're still going to hibernate and quarantine. There are going to be raw moments where we want to scream at the world why this happening, and other days when we simply rest in the Lord's hands and thank Him that she is here. That we have gotten nearly two years with her and we pray for more. We ask for patience as we continue to walk this path that society says was never worth it, that doctors told us to abort in order to avoid, and that the world thinks is too hard to walk. There are going to be tears, and there is going to be laughter. Because I've said it before and I'll say it again: Life is the intersection of suffering and joy.

And we'll walk this road by faith and not by sight.

And we'll hold fast to the truth that in this world we will have trials, but behold, He has overcome the world.

And we'll find joy in the mundane, hope in the suffering, and love will bind it all together.

And for the record, the smiling girl in the green onesie on the top row was just 30min after she coded on us and needed chest compressions and we figured out her trach came out. That's how quickly she can tip the scale onto the scary side, and right back to the happy side. She freaked her daddy out big time last week with that little stunt. #becauseitschloe #chloefreaksusallout #butwestilllovethatredhead