Sunday, May 3, 2015

Happy Birthday & Heart Cath

Chloe celebrated a huge milestone last weekend: She turned 1 year old!!!

There were so many amazing emotions that surrounded that day. Sometime, someday, I'll write them all down. But for now, I'm simply still pondering it all in my heart, much like Mary did with events in Jesus' life. I still cannot wrap up in one post all that this last year has taken us through and taught us and the many ways and things it has taught us to embrace. So for now, I ponder them. 

On the Monday following Chloe's birthday, we said goodbye to our bigs and headed to KC for her heart cath. We weren't sure what to expect with this. It could be anything from a simple procedure to needing emergency heart surgery if they found something worrisome. We converted the RMcD room into a home nursing room. We moved tables and chairs and trouble-shooted a lot (Shooted? Shot? Espresso? Double shot? Yes, please). Chloe got her first real tub bath, which she LOVED until Mommy accidentally got water right in her ear. We managed trach care on the edge of the bed, being uber careful of keeping all supplies clean and sterile. Then Chloe zonked out on her memory foam queen bed, fit for a princess. We nursed her through the night trading off in the wee morning hours and crashing from exhaustion or living on caffeine. At least this visit, since we had Chloe with us, we were blessed with a suite and had access to a kitchen sink, refridgerator, ice. Creature comforts. Here's a few images to show what traveling/staying overnight is like with Chloe....

After getting all settled into our room, we got the call that she needed more labs, so instead of packing up the van, we packed up the stroller and took her for a beautiful warm walk. Forgive her father for the goofy pic. He was high on caffeine and low on sleep. 

Chloe's turn to run across the big piano like her siblings did last year!! She loved it :). Then konked.

Passed out after a day of appointments and labs. 

Happy bathed baby, ready for trach care.

Yep, had to use Alan's backpack to hang the feed bag up above the pump. #alwaysimprovising. 

Thankful for counter space this time to clean trach, dry her things, and space to set up a better overnight environment for her. Missing from this picture is the giant tote of all things emergency, extra oxygen, power cords...this chick doesn't travel with carry-on's. 

Trach Tip: When traveling, throw all trach supplies in a HUGE container so that they're kept clean and easy to find in an emergency. This helped us a ton instead of packing random supplies in the emergency tote or trach bag. 

Tired baby. She really hated Mr. Sun and thought morning wake up time was for the birds. 

Tuesday morning's cath didn't actually start until after noon as the case before ran late. We should have gotten the call that she was out and they were getting started at the one 1hr 15min mark, but instead didn't hear until nearly two hours. After it was done we met with the doctor that performed the cath for consultation. I'm still foggy on a lot of what he said, but I'll do my best to sum it up. 

Praise the Lord there was nothing that was cause for emergency or concern. That's the first praise. Another praise is that the valve that has some slight reflux, which is most likely due to her blood pressure, is not moderate as they thought after her echo in February, but instead is extremely mild and not even on their list of concerns right now. He shunt is currently looking good and working properly.

Chloe's heart, as like many heart patients who are missing or have deformed hearts, has two superior vena cavas instead of just one. I probably spelled that completely wrong. Let's review: double shot of espresso please. Most of the time, when there are two, there is a vein running between the two to connect them. For the Glenn shunt to work (her next anticipated surgery), this is helpful because they can put in one shut, but it still works well because of that vein. In Chloe's case, there isn't one, so they'd need to put a shunt on both of the SVC's. Not sure the physics behind if this would work or not or be OK or have complications...that's for the team to discuss and weigh in on. 

At this time, the biggest question mark and point for concern is that Chloe is off her vent about sixteen hours a day, working towards eighteen this week, goal of off 24hrs (completely off) by heart surgery. Being on her vent affects the pressures in her heart and lungs. For the most optimal and best results and to set her up for success during recovery and procedure itself, we need her to meet this off the vent goal. And fast. Babies who are on ventilator and have this surgery...there's simply not a lot of good outcomes...The pressures recorded last week were at 21. Optimal is 20 and under. She's SO close. Our prayer is that she can wean the rest of the way off the vent before surgery is set. This is something they are greatly considering since she is so close, and thus heart surgery might be closer to June...July...perhaps August?? We just don't know yet. 

We're relieved that there were no big huge red flags that said either she needs something immediately, or that there's nothing flashing a big stop sign saying the next surgery is too risky and thus, the road would end soon. But this also means that Chloe's team has a LOT to discuss, risks to weigh, and we need to pray. The team will meet hopefully this Friday to discuss her case and then present her case to the surgical team as a candidate for the Glenn procedure (aka open heart with lung bypass surgery). 

Along with the procedure came some complications. She's a hard poke. It took them a ton of poking before they could finally get an IV in and cath line in. So much so, that there were questions surrounding this in the days after, as we notice more and more pokes, we had to come up with a game plan for next procedure and it will most likely include another PICC line. We're less than thrilled since this is how she got her clot last year, but trusting in the Lord to protect her when this time comes again. She also required a trach change during the procedure as she coughed her trach out. Putting it back in quickly, along with the IV next to her trach site left some issues and she ended up somehow coughing a little blood back down into her lungs. This played out over the next 24hrs with desatting to 60's (her normal oxygen saturation levels are around 80), and required oxygen off and on throughout the night and next day. A phone call to her vent doctor and it was decided that when blood gets in the lungs there can be a reaction much like asthma, so we began another albuterol inhaler plus flovent inhaler (steroid) regiment for the week. She's finally off oxygen as of Thursday afternoon, and as of yesterday started off vent/HME trails again, but yesterday only got to 7.5hrs. We'll get there though, in time and prayer. 

This simple cath was not so simple after all. So much to pray for. So much to seek the Lord on and about and for. But of all of this, we pray for peace and wisdom. We're still not sure if even having the Glenn means she can have the last heart surgery at age 3 or 4 because the trach comes greatly into play. That even off the vent, but still breathing through a trach means that surgery might not be possible. One thing we've come to learn with Chloe is that we just. don't. know. There have been so many questions surrounding each procedure, and yet she fights. There have been many in the past who didn't want us to put her through trach surgery, gtube, even heart surgery because they didn't think she'd survive. But she has. She's a fighter. We're saying now what we've said before, which is that if she's fighting, then we fight for her. If and when she lets us know otherwise, then we'll talk, but until then, we trust greatly and deeply in this peace the Lord has granted us to continue on this path of this-side-of-Heaven healing for her. 

Seems fitting to end this post with scripture, specifically the words we chose for our family on the day we had our family dedication two months ago. Trusting in the Lord as we raise and care for Chloe as well as her siblings. Trusting that He will make our paths straight, that we will trust not in our own understanding of this journey, but in His alone. 

My son, do not forget my teaching, 
but let your heart keep my commandments,
for length of days and years of life
and peace they will add to you.

Let not steadfast love and faithfulness forsake you;
bind them around your neck; 
write them on the tablet of your heart. 
So you will find favor and good success
in the sight of God and man.

Trust in the Lord with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge Him,
and He will make straight your paths. 

Be not wise in your own eyes;
fear the Lord, and turn away from evil.
It will be healing to your flesh
and refreshment to your bones. 

(Proverbs 3:1-8 ESV)


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