Saturday, June 26, 2010

Cousin time!

Luke is cousin-less in Puyallup. He has three cousins who live in Ohio and five who live in Spokane, but none where we live. What a treat this past week for him to spend two and a half days with his 5-year-old cousin, Sam. Uncle Cory and Sam flew from Ohio to Spokane (where Roger's mom and dad live) and so Roger and Luke headed across the mountains to spend a few days with family.

I think Luke enjoyed his cousin time. What do you think?






They had so much fun together. So much fun that one time when Rog asked Luke if he wanted to talk to me on the phone, I heard, "Um, I'm playing with Sam right now." Well, I've been praying for Luke to develop his independence!

On their last night at Grandma and Grandpa's house, Rog held the phone up outside the bedroom so I could hear Luke and Sam talking. I guess they laid on the big bed together for an hour, just making up stories and laughing. Rog called them two little old ladies, they talked so much. It made both our hearts happy to see him connect to his cousin this way.

We are already looking forward to our trip to Ohio!

Friday, June 25, 2010

Two weeks post-cath

We headed back to see Dr. Stefanelli again yesterday, for a post-cath checkup. I can tell Luke remembers very little about his cath experience because he wasn't anxious at all heading to the office. In fact, he would hang out with Dr. S. all day if he could.

Our echo was relatively quick, but Luke had quite the case of the wiggles. Our echo tech, Jason, was so good with him, telling him stories, asking him questions, so we got the pictures we needed. Dr. Stefanelli could still see a small "waist" at the coarc site. We may always see a slight narrowing there until we can stent it when Luke is 6 or 7. We are all hopeful Luke won't need another angioplasty before that time. He did reiterate that, although elective, the cath was the right thing to do and it did relieve stress on that ventricle.

He was pleased with how Luke recovered, how the site healed, and how strong the pulses in that right foot were. At 30 pounds, we are upping Luke to 1 aspirin every day (rather than 1/2) and we are dropping the Diuril. We have been on a very slow wean of that last diuretic and we are praying, praying that Luke's lungs stay dry and clear without it. If we notice him breathing heavier, we are to head in for a chest x-ray. So that leaves our countertop with Enalapril (2 mls twice a day) and aspirin only. Wow. Okay, okay, our countertop also holds mail, cell phones, vitamins and sippy cups.

Before we left, I asked him the million dollar question: How likely is it that we'll have the Fontan next summer? I know and he knows congenital heart defects are unpredictable, mysterious entities. But unless Luke throws us a curveball in the next year, we will not be heading to Children's next summer. Luke's heart is giving us the luxury of time and at this point, the risk of complications for Luke do not outweigh the completed Fontan physiology.

I remember back in December feeling overwhelmed (even sad!) at the news that we wouldn't be packing our bags and moving to Children's hospital this summer. And then yesterday, despite the fact that our timeline has been thrown out the window, I felt peace. God can change even the most stubborn of hearts! I am okay with not knowing for only one reason: God knows.

Monday, June 21, 2010

Daddy's the Man

Roger and Luke have this game where Rog asks, "Who's the man?" Luke will then yell, "Mommy's the man!" which sets off a round of tackling/wrestling/squealing. The roughhousing ends when Luke finally concedes that Daddy is in fact the man.

I knew when I dated, then married "the man", that in the world of fatherhood, he would be one of the greats. And I wasn't wrong.

 Roger meeting Luke for the first time.

This is a dad who, when our son was in the NICU and the nurses would phone our parent room every three hours through the night because baby boy was hungry, came with me every single time to nurse Luke. Just to sit there and be with me and his brand-new son.

This is a dad who teaches by example what it looks like to live with integrity.

This is a dad who does not treat Luke any differently because of his heart defect. It is important to this dad that Luke not use his heart defect as an excuse.

This is a dad who works 1 1/2 jobs to provide for his family, yet comes home by 5 p.m. most nights to spend quality time with Luke (and give mom time to go to the gym!).

This is a dad who: changed diapers (more than his fair share!), changed formula bags for Luke's feeding pump, pulled countless syringes full of heart meds, and was every bit as involved in sleep training and potty training as I was.

This is a dad who seeks God's wisdom in parenting, and prays for his son daily.

This is a dad who Luke adores.

We love you, Daddy! Happy Father's Day!

Thursday, June 10, 2010

Cath Results

I am so happy to now possess an accurate, to-date diagram of Luke's unique, God-given heart. Like most kids born with congenital heart disease, Luke's heart has never fit into those 400 or so "typical" heart defect diagrams, so all we've had is a near-match, with Dr. Stefanelli's additions and subtractions in pen. Here is what Luke's heart looks like today (minus the coarctation, which was ballooned yesterday in the cath lab):


You can see his Glenn and DKS procedure sites, as well as the coarctation on the descending aorta which led us to the cath lab yesterday. Before the ballooning, that narrowing measured 5.5 mm, whereas the aorta above the narrowing measured 8 mm. It is considered mild coartation, but again, Dr. Stefanelli reiterated his goal of eliminating any and all unnecessary stress on Luke's one ventricle.

Dr. Stefanelli started with a 9mm balloon, which dropped the peak to peak gradient from 21 to 13. He then inserted a 10mm balloon, which dropped the gradient to 7 mmHg. He would have liked to go a bit larger, seeing that gradient down to 0 or 1, but he said he was limited by the width of the aorta above the stenosis. Any gradient under 20 is considered "good", so he was happy to get that number down.

While he was in there, Dr. Stefanelli did two other things. First, he threaded the catheter into the ventricle to measure the filling pressure. My understanding is that this measures the function and squeeze. Luke's filling pressure was 11, which indicates very good squeeze, affirming what his echo's have shown.

Dr. Stefanelli also took pictures of Luke's right and left diaphragm. Unfortunately, that left diaphragm has not regained any function in the three years since Luke's plication, where is was stitched down surgically. We were hoping that paralysis was temporary, but no such luck. It isn't a huge deal in the whole scheme of things, but it definitely doesn't help someone with a Fontan circulation. Dr. S. feels like this is the main reason Luke's breathing has gotten heavier as he has gotten bigger. He said Luke has had to learn to breath from his abdomen without that functional left diaphragm.

Every time we talk with Dr. Stefanelli, we get the feeling more and more that he is in NO rush to send Luke for his Fontan. Because Luke doesn't fall into the hypoplast heart category, because his sat's are so high and his function is so good, I'm not sure we will even head up to Children's next summer. I think he'd like to hold off as long as possible, since he's pretty sure we'll deal with major effusion and drainage issues after the Fontan. I think it would be a different conversation if Luke's sat's had settled out in the high-70's, but they settled out in the mid- to high-80's. Just another opportunity for us to give over our plans to God, right?

Luke did great in the lab, however, he had one coughing episode (remember his stuffy nose?) that forced the anesthesiologist to suction Luke a few times, as well as bag him for a few seconds. Dr. Stefanelli told us that he didn't even know it happened since he had turned to the computer and it was over so quickly, but you never want to hear your child stopped breathing! Thank you, Lord, for your protection of Luke. We love Dr. Stefanelli ... he said, "He didn't go into cardiac arrest or anything." Okay, then .... good to know!

Here are a few pictures from our day yesterday. Luke is doing well today, although I haven't been able to take off his bandage yet. He is kind of freaked out about me touching it. No, not kind of, really freaked out. He keeps telling me he still needs it, that his owie isn't better yet. I told him I could do it now or Dad can do it tonight in the bath. He picked Dad. Smart kid ... he bought himself some time.

Happy boy, waiting in his yellow scrubs.

 About three minutes after his Versed dose. He was a total noodle in my lap!

 Walking upstairs to the cath lab. When Rog handed Luke to Dr. Boorman, he asked him in a sing-song voice, "Where are we going?"

First smile after the cath. There's our boy!

Thank you, so much, to everyone for your well wishes, texts, phone calls and prayers. Thanks to Pastor Mark who came bright and early to the hospital to pray over Luke. Thanks to my dear friend, Erica, who has lined up meals for us through the entire weekend! Thanks to the nurses who were so competent and compassionate. And thanks to Dr. Stefanelli. We don't believe our boy would be doing as well as he is without him.

Wednesday, June 9, 2010

Home, sweet home

After being thoroughly prepared to spend the night in the hospital, we are, praise the Lord, sleeping in our own beds tonight. It was a long day, but we are so thankful to be at home together.

I mentioned the pre-cath went well, the cath itself went well (details to come in the next post!), the last two hours before discharge went well. It was the two-hour war we waged post-cath that has us exhausted tonight. Even at 6 months old, we remember Luke fighting to come out of anesthesia — fighting so hard he popped his access site and bled like crazy an hour after his first cath. It was the same today (thankfully minus the blood!). He just gets into this state of aware-fogginess and he does not like it. We held his legs, we offered him the sun, but all he could say and cry about was his I.V. He wanted that thing gone and there was no reasoning with him.

After we got him to finally drink some water, Dr. S. okay'd removing the I.V. and that helped a bit. He still whimpered and cried a bit, but at least he wasn't nearing hysteria anymore.

Child-life came in at one point to see if they could help and of the eight toys she introduced to Luke, this one musical fish toy caught his attention. It was so interesting, he actually would hit the on/off button really hard and the child-life specialist encouraged him to hit it and be mad. I actually think that helped a bit. He was ticked and he needed a way to express that feeling. Every so often he'd reach for that music-maker and take a whack at it.

There was a point where the nurse offered to give Luke a small dose of Versed, to help him relax a bit, but Dr. Stefanelli came in about then and said that may just delay everything and at some point we'll need to get him through the worst. We agreed and held off and soon after Luke started to relax on his own. You could tell he was coming through the anesthesia: He would listen to you and answer, his speech wasn't as slurred. After about two hours, he got much, much calmer. He was content to have his pacifiers and watch JayJay the Jet Plane.

30 minutes of calm led to visitors! Grandma Cindy, Yvonne and Papa Pat came to see him and help keep him occupied. It was at this point, about 1:30, we saw a smile break through. His appetite perked up a bit and he ate goldfish and graham crackers and french fries from the famous Frisko Freeze across the street from the hospital.

At 2:15, Dr. Stefanelli came back in, took one more blood pressure (which, if elevated, would have kept us overnight), deemed it "perfect" and said we were good to go home. We didn't argue, but were polite enough to wait until he left the room to start packing our bags.

We were on the road by 3:00!

This evening at home Luke has been grumpy and whiny, but we're home, all three of us.

Versed, sweet Versed

Luke was just taken back to the cath lab, carried by Dr. Boorman, the anesthesiologist. If you know Luke, you know that that only happened because a) Dr. Boorman is a familiar member of the family, or b) Luke had his Versed 20 minutes before.

We are so thankful that transition from Mom and Dad to the anesthesiologist went so well. Everything has gone well so far this morning, and Luke has been a trooper. He actually woke up super early this morning, and when Rog was getting up and into the shower he said, "You ready to go see Dr. Chris pretty soon?" And Luke yelled, "All right! Let's go see him!" That was a pretty sweet way to start a long day.

Dr. Stefanelli did prepare us he may want to keep Luke overnight tonight, since after an angioplasty, his blood pressure could be elevated for a while. If everything stabilizes out by early evening, there's a chance we could go home, but most likely we'll rest our heads here tonight.

Keep those prayers coming!

Best Versed moment: Rog carried Luke and Luke's hospital crib carried all our bags as we were escorted up by the cath lab nurse to the 7th floor. In the elevator, he got a little giggly and asked in a slurred voice, "Why is that bed in the elevator with us?" Be safe, sweet boy.

Tuesday, June 8, 2010

To cath we go

Tomorrow's the day ... Dr. Stefanelli felt comfortable and confident moving forward with Luke's catheterization tomorrow, despite the crusty nose. We are packing our bags tonight and we'll head out bright and early tomorrow. We welcome and cherish your prayers!

Monday, June 7, 2010

To cath or not to cath?

God continues to stretch our family's faith muscle, in big ways and small. He continues to ask us to put His plans above ours and to trust Him above all else.

About two and a half weeks ago, Luke started coming down with a cold, but it never got worse than a stuffy nose and some coughing in the night. We thought for sure he'd be healthy as a horse come this week, as we approach his cath date. Well, this stuffy nose has hung on stubbornly, so I put a call in to Dr. Stefanelli this morning to let him know. He is willing to take a look and listen to him tomorrow afternoon before making a decision as to whether we go forward on Wednesday or not.

We ask for prayer for 1) God's perfect timing for Luke's cath, and 2) God to give Dr. Stefanelli wisdom when we go in tomorrow.

Tuesday, June 1, 2010

Towering towers and the staring game

Roger and I went on a proper date Sunday night while Luke spent the night with Nonna and Papa. Not only did Luke get to play with Nonna and Papa, but my half-brother was home with a couple of his friends, which makes for big fun for our big guy. He loves it when Evan has friends over. I think he thinks he's one of the "kids". And my brother is sweet enough to take a break from doing 17-year-old things and play 3-year-old things like build giant towers for Luke to knock down (keep in mind my brother and his friends are 6 feet tall):


Is that a kid's dream, or what? Luke is beside himself.

Here's another sample of some of the fun he has with Evan, in video form.

(Background: Evan was trying to teach Luke how to play the "staring game", where you see who blinks first. Evan showed him one time how to do it, counting "1, 2, 3, go!" and this is how Luke interpreted the game.)

video