Tuesday, February 28, 2017

Jet Fighter

When we were matched with Jet, we started a Facebook Group call Jet Landing for friends and family to follow along with our road to Jet (I really much prefer the word "road" or "adventure" instead of "process" or "journey", which I'll maybe explain in a later post.) For obvious reasons, and for our little play on words, we changed it to "Jet Landed" once we were home in the States.

Now, for the third time, we're changing it again. 

Our little guy is stubborn...

July 2016
 Our little guy is strong-willed...

August 2016
And our little guy dives straight into the middle of things, whether it's jam on toast or a crowd of people. This is how he approaches life. Center of. 

July 2016
These are all things we've learned about Jet over the course of the past nine months. His near constant motion, his happy demeanor, his curiosity...these are also things we've learned. We read these things about him in his paperwork when we were matched, but we were finally able to experience all of them in person and every day since our Family Day in May. 

But most of all? Our little guy is a fighter. And that's why we're renaming our group to "Jet Fighter." 

We've had so many tests and procedures. He's been a trooper through all of them. Most recently, we changed up some meds at his regular appointment in the middle of January, and got ready to hurry up and wait. Since Christmas, Jordan has been slowly sleeping more...and then finally the past two-three weeks asks to go to bed or nap before noon or before 7:30...and then takes a 2-3 hour nap plus sleeps a solid twelve hours a night without waking. Considering up to his bad respiratory infection in December he wasn't even taking a nap and just having a "rest time" in his bed for 2(ish) hours with toys and books, this was something we've been keeping an eye on.

Due to J's pneumonia from last weekend (that apparently may not have been pneumonia but we're still calling it that because no one really knows what it was), they discovered while comparing his chest X-rays from December to now that his heart was significantly larger, so last Wednesday we added some new meds and doubled the ones we were on, plus take his oxygen levels regularly, with instructions for labs to be drawn in a few weeks while the doctors conferred about possible surgery this year.

The final straw was we've gradually been noticing his lips being that blue shade you never want to see, and a few lower sats recordings this weekend than what he was previously capable of while healthy (now that his cough was gone). We emailed our cardiologist with our list of concerns. Since Jordan basically has been sick since the middle of December with only a couple of healthy weeks between, there was a good chance that we were worrying over nothing (maybe lips were blue because he was cold? and clearly he needed to catch up on sleep from the multiple hospital stays!), but we wanted the doctor to be aware that we were starting to notice these things. 

All of that background to say...our cardiologist called yesterday afternoon, and without much preamble, stated that we would be scheduling Jordan's open heart surgery as soon as possible, most likely toward the beginning of April. Apparently, our email on Sunday confirmed what he's been studying over the past week(s). To say the least, we were shocked. We assumed we'd be bumping up his next appointment, or maybe adding a halter monitor to the labs in a few weeks. We were not expecting him to say let's get things moving for heart surgery. (Which, by the way, is irony for you: here we've been expecting and expecting and expecting surgery, and the doctors always putting it off...and when we least expected it, BOOM, surgery asap.)

Today, 2/28/17
So that brings us back to our Jet Fighter. All of those qualities that I listed earlier? Those are what have gotten him through his surgery in China, his transition from his other family into our own, from one culture to another, and those are what will get him through this surgery and recovery. The surgery is more complicated than originally thought, but the doctors have a positive outlook on the prognosis. It will hopefully alleviate some of the pressure on his lungs from the pulmonary hypertension, as well as close up a significant leak in his mitral valve. It may decrease the severity of all of these colds and respiratory infections too. Previously discussed was a pacemaker placement, and while no mention was made of that yesterday, we assume that is also still on the table. They will also take a look at his mitral valve, and see if they need to or will be able to replace it some day in the future if it comes to that.

We would truly appreciate your prayers for all three of us in the next few weeks. Specifically, Derek will be traveling overseas for a week or so in March so I'll be holding down the fort and again possibly later in April or May. We absolutely need Jordan to stay healthy so the surgery can be performed as planned. And then for me, as the master scheduler, I have a number of odds and ends to tie up between then and now, such as we received a referral to pulmonology that is supposed to take place at the end of March but don't know if it will still be needed, and Jordan also was set to be evaluated for Early Intervention, also in March (due to a gross motor skill delay) that also might not be needed...as what would be the point of starting physical therapy two or three weeks before open heart surgery? Plus the normal pre-op tests, appts., etc. And pray for Jet...that he keeps his fighter stance, and comes out of this with a new brave scar?

And finally...we'd still appreciate prayer and wisdom for when our next match/referral comes. We truly believe he/she is out there waiting for us as we are for him/her...and life goes on outside of our little red brick house and OSF hospital walls. We want to be ready to say yes when that time comes, whatever our circumstances are at the time, but also want to be able to wait patiently. 

So many verses come to mind, so I'll leave you with some passages that have brought comfort to us recently: 1 Samuel 2, Psalm 46, and Hebrews 11. Please pray them with us, and for us: for patience (again), strength, wisdom, and faith.