Thursday, May 14, 2015

Update, Game Plan, Changed Plan

Going to try my best to update on a few (a lot of) things, but it's 4:15am, so let's see how this goes...

>>Sweet girl turned 1 year old on the 25th of last month!! YAY!!!

>>Then she had heart cath on the 28th. Progress...

>>Then she was extremely sore from pokes and started a stomach and GI bug on the 30th. Boo >:(

>>We got results from the cath back, set up a game plan for the next few months thru end of summer, started to look at scheduling things, like a bronchoscopy//ear tubes//check GI tract by end of May.


If you don't know much about Chloe, she likes to switch things up the minute we make a plan. She let's us know that the Good Lord and her are gonna make up their own minds. What's that verse? "The heart of man plans his way, but the Lord establishes His steps." Proverbs 16:9. {You can listen to a sermon from Chloe's Daddy on this very subject here).

So we got the call last Friday about the game plan. It included doing a bronchogram (aka scope her airway while she's under) to check the bronchomalacia (where her airway clamps down when she breathes out-the only reason she's on the vent) to see if it's still there; to check for the possible trach ring because if it's there and bad, they can now do the reconstructive surgery at Childrens WITH the heart surgery!!! This is huge. HUGE. If it is, they can do the surgery, meaning in the future, she might be able to be off her trach completely and have what's called a decannulation, or close that hole right on up and breathe through her mouth/nose instead. Our goal then was to make rounds this month seeing a few peeps like her old friends back at nephrology, ENT, home vent team visit, and get these tests scheduled so we can get to scootin' on seeing what this trach stuff looks like.

But it's baseball season. Chloe likes baseball. She likes to throw curve balls, in fact. Slightly big ones. You see, the original game plan meant we might be able to push the Glenn procedure back till July or even end of summer, letting her get bigger, come off the vent completely, perhaps even if this trach ring isn't there or can be fixed, and the bronchomalacia isn't there/healed, then even decannulate before the Glenn.

And then there was last Friday...

>>Sats slowly trending down from Friday evening through Monday morning, finally hitting around 71 with desats to 64 on Monday and requiring a little 02 to bump them back up. Heart rate increased from her norm. Looked flush/pale most of the morning. I literally woke up thinking today was cleaning day, and within the first hour I was awake, we were on the phone with home vent team, packing the kids' overnight bags and a few little toys incase we had to go to KC quickly. Turns out by then she started doing ok, home vent had us keep a close eye on her, and made a last minute appointment for Tuesday.

>>Tuesday the 12th--met with Home Vent team (aka primary docs) and GI doctor to discuss this crazy spit up cycle.

  •  Found out that what's most likely happening is that these viruses she's had are causing havoc on her GI system, and temporarily paralyzing it to where her intestines and stomach can't agree on which way to push the food...front door or back door. And because of her heart, there's extra pressure on this system. Two options: 1) Switch formula. Not many to choose from at this point, but there is one, and we'd try this first before giving more meds. 2) Meds. Antibiotic to help system remember its job. This question was thrown to the heart team to make the final decision.
  • She needs a longer pediatric sized trach instead of her neonatal sized trach. But they were all out, and we need to do an xray after putting in a new one, thus we'll have to reschedule this for another appointment this month when the custom trach is in. 
  • The longer trach will also help a bit with eliminating spit ups. We're now suctioning more often/quicker when she coughs because we know it's too short and more secretions could gather and possibly clog off the trach (BAD!). 
  • Xray on stomach and chest just to make sure there's nothing else we should know about with this sneaky one. 
>>Labs for anti-clogging genetic test before upcoming procedures, CBC (red blood count great, even slightly high / / white blood count up as well though, meaning she definitely is working on an infection / / kidneys still looked good on labs).

>>Then we made our sweet way to the CHAMPS clinic, running into our beloved PACT doctor in the hallway and bragging on how well our little trach trunk elephant is doing.

  • >>CHAMPS took BP, and it wasn't pretty. Average of 3 was 140's / 70's. That's bad for an adult. Chloe is one year and weighs 17.5 pounds. GAHH!! They wanted to do an echo because the last she had was in February. We were slightly confused thinking they did one during her heart cath just two weeks ago, but they said they didn't end up doing it. So off to an echo that took another 40min. The results were that her valve (she only has one working valve) is leaking. A lot. Hence the high blood pressure. Kidney and heart are apparently on opposing teams right now, if we're keeping with the baseball theme. Kidney is working hard >> Heart is having to squeeze harder to help block off some of the flow through that valve because it wants to leak so bad >> Squeezing harder equals more pressure on her little heart and body >> Means Mr. Kidney is making for some seriously high blood pressure. Only fix is medicine, so we started going up on her blood pressure med, will monitor this over the next few days and try to take BP at home. This med can cause sats to drop though, so we'll watch for sats to hang out in lower 70's, with a lot of dropping into 60's at which point we'll do oxygen. If she starts riding over 1L 02 on average, then we get her back to CMH and they admit her, bump the bronch WAYYYY up, get it done, get results, get game plan for surgery, and bump the Glenn way up. The Glenn alone will take half the work off her heart, thus relaxing her heart, thus relaxing that pressure on it and the higher BP should lower as well. 
So this is where we stop to PRAISE. You see, they didn't do the echo in the cath. But the cath showed minor leakage in that valve. We thought we were all ok here. Turns out, it was only minor at the time because she was sedated and so relaxed that her BP during the procedure was low. Praise the Lord that they didn't end up doing the echo or it would have showed the same thing. Since it was done when she wasn't under, it showed just how bad this leak is. In His sovereignty, the echo was done at the precise time so that we could gather the info we need.

****New Plan**** {Please, seriously folks, don't tell Chloe}

 >>All of the above. Go back for appointments all through May for ENT, Home Vent to follow up on trach and GI stuff, see nephrology (aka kidney doc) to check for why kidney is doing this other than just the current station of her heart, get this bronch scheduled asap. Get her weaned off the vent 24hr. Currently (literally, tonight/morning) she's at 22+ hours off. She's also still fighting off a little something, so we're watching that, and making sure she's not dehydrated (perhaps why heart rate is slightly higher). I'll add in the prayer request (assuming the other requests are obvious at this point from reading the post) for safe travels for all of these trips, for logistics of all the appointments to smooth out, and for help with childcare.

Nervous factors: Seeing her trend down on sats and knowing she needs 02 to stay up, yet at the same time knowing that's ok and what we need to do for now. Wondering how long she will do that before we have to admit her. Watching her need oxygen. She's been doing so good that it just sort of hit me how sick she is at the moment. But remembering that she is fearfully and wonderfully made and we are trusting the Lord with this.

Other factors: Sensitive hearts. We're seeing a lot of babies born last year around this time who are turning one, eating their cakes, taking their first steps, growing and getting bigger each day. We're noticing just how far behind Chloe is. It's so hard. We were just talking the other day that we're so far removed for what "normal" babies/toddlers look like size-wise and developmentally that it's hard to even judge what age other toddlers or infants are. We're trying very much to remember to cling to the fact that God made Chloe just how she is and it's not our place to mourn the milestones she's not at yet, but rather to rejoice in all she's accomplished. Easier said than done, but our goal none-the-less. It just feels like another season of mourning with those who mourn and rejoicing with those who rejoice. Being joyful in seeing others' lives moving forward {Romans 12:15}; being content with where our season is right now {Philippians 4:11-13}; and laughing in the face of fear {Proverbs 31:25}. The last especially applies in our coming season of being back in the PICU for the bronch and Glenn. So many sights, sounds, fears when walking into that many waves of memories from exactly a year ago. Please pray for peace as we begin to walk backwards, into a season of unknowns, surgeries, long days and sleepless nights, Ronald McDonald house overnights, missing our kiddos...back into the hospital world, back into another summer where we can't plan anything normal, like picnics and playgrounds with the kids, swimming lessons, or other fun family summer pastimes because we don't even know what our summer calendar will look like...because it'll stop for a moment in time while the world swims past us again...

But we continue to do so, one step at a time, with hope.



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