Sunday, September 23, 2012

Cardiology appointment

Deep breath in. Huge sigh of relief.

Luke received another six-month pass and high five from his cardiologist yesterday. I kind of can't believe it (oh ye of little faith!) but am so thankful that Luke's heart function continues to be so good. His squeeze is as good as last May and the blood flow through his coarctation is "turbulent" but not concerning at this point.

Luke's oxygen saturations were 84-86%. This is the number that will most indicate when it's time for surgery. This number has been the same for five years. It blows me away that his sats have stayed in the mid-80's for so long. For many kids with a single ventricle, this number starts to decline as they get bigger and taller and the heart has to work harder to pump blood further away from the heart. It makes me wonder if Luke's gradual growth over the years, and being on the smaller side has helped maintain his sats. Luke has never had a giant growth spurt. His motto is slow and steady.

Whatever the reason, our new doctor feels very comfortable with those numbers and not moving forward with the Fontan yet. He does believe, as did Dr. S., that his sats will start to drop at some point and we will notice more fatigue in Luke. Then it will be time for surgery. What no one will say, however, is when that will be. I think for both Dr. Kim and Dr. S., this is new territory. Luke is their oldest patient yet to have this third-stage surgery.

I joked with Nurse Melissa that appointments at five years sure are a different experience than appointments at two years.
Dr. Kim did share with us that one of his patients pre-Fontan developed pulmonary fistulas, which caused his sats to drop and his Fontan to be quickly scheduled. This isn't a super common occurrence, but something to keep an eye out for as we wait. The only other downside of waiting, is the theory (theory!) that lower-than-normal oxygen levels can affect learning development. We haven't seen a single sign of that in Luke, but something that we need to weigh during this process.

I'm trying hard to look at our situation as a process God is walking us through. When you first hear "He'll need three surgeries ...", it's hard not to look at the Fontan as the finish line. But whenever Luke's Fontan is, he will continue to need care and intervention and medicine. He's never going to be "done" or "fixed", but God willing, he will be strong going in to the Fontan, and stronger coming out.

Luke was stellar during the appointment, so naturally, here's where we took our future "Lego Artist":

Thank you, everyone, for your thoughts and prayers. We continue to covet them and treasure them.

Thursday, September 20, 2012

Cardiology appointment tomorrow: Prayers requested!

We just scheduled Luke's next cardiology appointment for this Friday morning. It's about a month early, but because our insurance rolls over to a new plan October 1, an earlier appointment benefits us. I have the pit-in-the-gut right now. Blegh. Luke's been a little congested, and therefore a little blue and winded, which always increases my anxiety about his heart health. I know we got a great report not five months ago, but this is also a world in which things can change fast.

Take Addison. She had her Fontan a year ago and has been doing just great. Three weeks ago her echocardiogram looked beautiful. Today? She is listed as 1A in the Cardiac ICU, needing a new heart immediately. She had a myocardial infarction heart attack last week and is a very sick girl.

I share that for two reasons: One, because this girl needs our prayers. But also because we have a choice. And of the two choices — fear or faith — we can only choose one.

A Charles Swindoll devotional was handed to me and Roger a couple of days ago by a friend ... and this before he even knew about Luke's upcoming appointment. It talks about the two choices we have each day (sometimes each moment!). One is a "monster" (the emotion of fear); the other a pillar (the decision of faith).
"In order to trust God perfectly, we must see our situations through eyes of faith, not our feelings. Either the Lord is sovereign and in full control, or He's off His throne altogether."
I could so easily let the emotion of tomorrow's appointment, and the tragedy of Addison's situation distract me from God's sovereignty. That He is Who He says He is, that His promises are sure and that He is going before us tomorrow.

He already knows what Luke's echocardiogram is going to show. He already knows what his sat's are going to be. The more I replay this truth in my mind, the more it reaches my heart and calms my fears. When that pit in my stomach tells me to run and hide, when my emotion leans toward anger at the unfairness of Luke's heart defect, I am going to choose the pillar of believing God is in charge.

Please pray with us for another good report on Luke's heart. This will also be our first appointment with our new cardiologist, so prayers for peace and like-mindedness would also be appreciated!

Wednesday, September 12, 2012

Kindergarten: Week 2

Feeling so thankful this morning for our sweet neighbors. Each morning this week, Luke has had someone to make this long walk to his class' line with a friend from the neighborhood. Above is sweet Ari walking Luke back to his kindergarten line. When Ari walk him back, it's a miracle, there are no nerves! He just jumps right out of the car, comparing whose backpack is heavier.

A miracle, or a tiny little crush?

And speaking of this picture, how can my son be so grown up and so little at the same time?

School is going really well. We are settling in a bit more to a morning routine and we have managed to be one time each day! The afternoon crabbies are also getting a little better as Luke adjusts to going to school every day ("What?!" He says to me on Friday morning. "I have to go to school TODAY?")

Yesterday, Laney and I made our way down to the bus stop at the entrance to our neighborhood a minute or so before 11:45. 11:45 ... 11:50 ... 11:55 ... still no bus. I finally called the school at noon to see if I should be concerned or not. The secretary hadn't heard anything but said she'd call me right back. When she did, she informed me the bus had already been by, but since there was no one waiting for Luke, it kept going. She said the driver would be looping back around shortly to drop him off. Whoops. Rookie kindergarten mom mistake.

Thankfully Luke was fine and actually appreciated the extra long bus ride. Usually he's the first drop off so I think this was kind of a treat for him. For the bus driver? She gets a famous Puyallup Fair scone tomorrow.

We have a meeting next Wednesday with the school counselor and Luke's teacher, to go over his drafted 504 plan. It will be good to once again touch base about Luke's special heart and make sure we're all on the same page. Thankful everyone at Shaw Road has been so accommodating and receptive.

And one final thankful. I received this email from Luke's preschool and pre-K teacher this morning:
Good Morning Jesse,

How is Kindergarten is going for Luke?  I've been thinking of him ever since school started.  I hope he's loving it and his teacher already realizes what an extra special little boy he is!

Love to you and your family,

In so many ways, I see God's hand of provision on Luke's life. And I give Him glory.

Friday, September 7, 2012

177 more days

Day One is in the books. It was a good, good first day of school for Luke. No tears (for him or me!) and a hope that tomorrow would be even longer. I am definitely taking that as a good sign.

Parents were invited to come into the classroom with the kids in the morning for a "Meet and Greet". Mr. Independence walked in with me. He wanted no help hanging up his backpack, taking out his school supplies, and finding his desk.

After the parent/child activity, the kids were invited to rug time to hear Mrs. Suther read "First Day Jitters". Luke raised his hand honestly when she asked the kids if anyone was nervous. If I weren't holding Laney, I might have raised my hand too. After the story, I told Luke I was going to go and he bravely said "Bye, Mom." So I went. I walked out to my car and thanked the Lord for my sweet boy.

Day Two: My son is officially a kindergartener. And the nerves officially hit on this morning. I predicted these nerves would hit Monday, but they came sooner than that. It broke my heart to watch him battle his fear and fight tears. I agreed to walk him to his classroom door and after making sure his teacher would call me if she needed to, he walked into his room. It reminded me a little of a walk toward the gallows.

I reminded him that he has felt this nervous tummy before and that as soon as he was in his class, it would go away.

I reminded him that he knew his teacher and that she would take care of him today.

I reminded him that I would be there after school, waiting for him.

And then he reminded me where our strength comes from:

We were walking back to his line where his teacher picks him up. "Luke, remember last year at Pre-K, and I would say to you, 'I'll see you at 11:30!' and that would help you? What should I say this morning that might help you?"

"I think I just want to pray."

Oh my word. How many times do I struggle through a situation, looking inward for a solution that may or may not work. Why is my first response not to pray first EVERY TIME?

So, as we walked toward his line, I prayed for him. His fear didn't disappear instantly or completely, but I think we both felt a bit more peaceful. And I knew that he knew God was going before him.

I may have a college degree, but my kindergartener was much wiser than me today.

You know what else he was today?

A bus-rider! The first thing he said to me after he got off was, "That was so short!" We'll see if he feels the same way in February :)

Now it's Day Three. Drop-off was much better today. I did agree to walk him to his classroom door again, but it was a happy walk rather than clingy. We saw all of his neighborhood friends before the bell which I know helps him a ton. He loves being like the older kids and they all are so good with him. "Hey Luke! Have a great day, Luke!" Big hugs and high fives eased the nerves this morning.

School is almost out so I am going to go meet the bus and give my kindergartener a huge hug.

Saturday, September 1, 2012

Shaw Road, Here He Comes!

I am a crazy concoction of emotions these days. Thrilled my first-born is four days away from this new adventure called kindergarten. Confident that God has placed Luke with the right teacher. Anxious that Luke will be anxious (we had a rough spell the first couple weeks of pre-K last year ... drop-offs were not the prettiest).

Interwoven with all of the above is the emotion that come with sending a child with special needs off to "big" school for the first time. When Luke is at the park with me, when he's at Grandma's or running around with the neighborhood kids, there is no 504 plan, no Emergency Action Plan. I take that back: Mom and Dad were the emergency action plans. I know his doctors' numbers by heart, I know what he looks like when he's resting and when he's playing. I know when to give him his medication, when to push, and when to back off.

Making sure that is communicated to all his school caregivers feels bigger than I thought it would.

What I want to communicate to his school is this: Luke is a normal kid, but he's not. Know that his heart defect is serious and complex, but treat him like any other kid. This is a fine line to walk.

Thankfully, everyone I've worked with so far has been receptive and supportive. Mrs. Cook, the school nurse has been the point person in making sure all Luke's paperwork is in order as well as distributed to everyone's hands it needs to be in: teacher, librarian, music teacher, recess duty, etc.

Luke's heart defect is never far from my mind, but it's been more forefront these past couple of weeks than it has in a while. He is not your average five year old heading off to school. Although I am 99% certain that there will be no need for an Emergency Action Plan (which includes situational instruction for things like blue spells, heart palpitations, chest pain, etc ...), it still needs to be in place. Every form I sign, call I make, I am reminded that Luke's heart is oh-so-unique.

We've had to navigate this letting-Luke-be-a-kid before, but this is a biggie. My heart is so ready for him to experience kindergarten and I believe he is ready too. His backpack is packed, his hair is cut, his new Nikes are bought. We are praying hard for his teacher and the kids in his class.

I took him to Kindergarten Orientation a couple of weeks ago and while the parents stayed in the gym for Q&A, the principal toured the kids around the school, showing them the classrooms, the library and of course the playground. Luke had a good time and didn't seem nervous at all. We've talked so much about it, he seems very matter-of-fact about it. It helps that several of his older neighbor friends will also be at his school.

A lot of people have asked me if I'm going to cry on the first day. I don't know, but I don't think I will. This is such a happy thing, a celebration of a gigantic milestone. If the tears do come, they are because I am so darn thankful to God for bringing us this far.

For those of you heart moms with future kindergarteners, here are some of the great resources I found and used to give to Luke's school:
Our cardiologist provided the Emergency Action Plan document and faxed it directly to our school, along with providing us with a prescription for a 3-day emergency supply of Enalapril for the nurse to keep in her office.

I have been so thankful for the response we've gotten from everyone involved ... at the cardiologist's and the school. Kindergarten, here comes Luke!

Go get 'em, buddy.