One amazing boy

Another scar, another day

Luke is doing well and sleeping soundly after his diaphragm surgery last night. It amazes me what this kid has to battle through and he does it with a smile on his face. Yesterday, he had to stop eating around noon and he wasn't taken back to surgery until 8:30 p.m. I am truly not exaggerating when I say he was giving us big smiles even up to the point we had to hand him over to the anesthesiologists.

Grandma Janis helping us move
our wagon of stuff from our room
on the Giraffe Floor out to our R.V.
while Luke recovers in the I.C.U.

It was a late night as we didn't get to see him again until 10:30 p.m. But he looked great and the surgery went without a hitch. He came out of the O.R. and stayed the night in ICU, but the plan is to move him back to the floor later today. He is currently on morphine, but they are switching him to a little bit less strong pain medication called Toradol. He is going to be pretty sore for a few days since the incision in his side is through layers of muscle. Poor guy, he was well on his way to healing from his chest incision! He also has a new chest tube in for any drainage, but not much has been draining, which is good. He has had a few small bottles overnight, so overall really good news. He is also on no oxygen this morning and his sat's are in the low 80's. That's already higher than we've seen since surgery.

Prayer requests would be for minimal discomfort for Luke over the next few days, also that he would continue to eat and that there would be no secondary complications from this surgery.

Our journey at Children's continues

So we are still at Children's ... and possibly heading into another surgery tomorrow afternoon.

Thankfully, Luke's heart is doing great, but they have discovered that his left diaphragm is paradoxical. What that means is that it is working in the opposite direction it's supposed to. When it's supposed to be expanding and opening, it's contracting and vice versa. In a baby, and especially a baby who just had the Glenn operation, this can interfere with his lung capacity. That is why they are thinking his saturation levels haven't come up to where they'd like them to be. Over the weekend, they were thinking it was the fluid perfusion in his lung, but are now leaning towards this diaphragm abnormality to be the cause of his lower sat's.

So, what does this mean? There is a procedure they can do called a diaphragm plication, where they surgically go through Luke's side and put a series of stitches into Luke's diaphragm to cause it to lay flat and not work against his left lung. They are going to do one more study this afternoon to get an even better look at the way Luke's diaphragm is working and from there make the decision to operate or not. If they decide to, it would be tomorrow around 5 p.m. It's a fairly quick procedure, but one where Luke would have to go under anesthesia again, and probably stay one night in the ICU to be monitored. It would probably keep us here an extra four or five days for recovery.

Rog and I are kind of numb to the idea of another surgery, which is probably a blessing from God. We trust the doctors here implicitly and they have been conferring with our cardiologist in Tacoma as well. I know they will only do this surgery if they truly believe it will help Luke in the long run. It definitely feels like a huge step backwards, but again are finding thankfulness in that they can diagnose and fix issues like this.

I will let you know what they find out in the test this afternoon. Please pray that Luke's diaphragm would actually be working correctly and the God would give the doctors perfect wisdom in their decision-making.

Storms in the Desert - a Devotional

This devotional was sent to me by my dear friend Erica today and brought much-needed encouragement. I wanted to share it with you.

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I once visited the testing room of a large steel mill. I was surrounded by instruments and equipment that tested pieces of steel to their limits and measured their breaking point. Some pieces had been twisted until they broke, and then were labeled with the level of pressure they could withstand. Some had been stretched to their breaking point, with their level of strength also noted. Others had been compressed to their crushing point and measured. Because of the testing, the manager of the mill knew exactly how much stress and strain each piece of steel could endure if it was used to build a ship, building, or bridge.

It is often much the same with God’s children, He does not want us to be like fragile vases of glass or porcelain. He wants us to be like these toughened pieces of steel, able to endure twisting and crushing pressure to the utmost without collapse.

God does not want us to be like greenhouse plants, which are sheltered from rough weather, but like storm-beaten oaks; of wind but like granite mountains that withstand the fiercest storms. Yet to accomplish this, He must take us into His testing room of suffering. And many of us need no other argument than our own experiences to prove that suffering is indeed God’s testing room of faith.

It is quite easy for us to talk and to theorize about faith, but God often puts us into His crucible of affliction to test the purity of our gold and to separate the dross from the metal. How happy we are if the hurricanes that blow across life’s raging sea have the effect of making Jesus more precious to us! It is better to weather the storm with Christ than to sail smooth waters without Him.

What if God could not manage to mature your life without suffering?

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Luke enjoying his time at Children's too much

Luke has decided he's not quite ready to go home yet, much to his parents' disappointment! Yesterday, Luke's chest x-ray showed a little fluid pocket in the left lung and his saturation levels would dip below comfort level, so they ordered another x-ray this morning. Thankfully, it looks a little better than yesterday, so they are just giving him a couple of doses of Lasix through an IV (which is more effective than an oral dose) instead of having to insert a new drainage tube (which they were going to do if his x-ray didn't improve from yesterday).

It's been a bit of a tough morning since he's had to have an IV put back in and his oxygen is back on, but we are praising the Lord that the fluid is less than yesterday. We are praying that the Lasix does the trick and that we will be back on track to get home this week. They were confident we'd be home tomorrow, so we're definitely feeling some disappointment this morning. It's also hard to see things going back ON Luke at this point, since he was pretty much free from all his wires for a couple days.

The other thing we're thankful for is that they caught this before we got home. It would have been much tougher to have to come back to the hospital rather than extend our stay a couple days. Please pray that Luke's lungs clear up quickly and that we would be on our way home!

Luke continues to have a joyful spirit through all this, and is making friends all over the floor =)

Luke update - doing great!

A big step ... Luke's oxygen was turned off as of last night and he did really well keeping his sats up through the night. We are excited to have one more thing removed! Also they're going to take out his pacemaker wires this morning, so he will be totally free except for a couple monitors! They are going to also take out his chest tube sutures and give him a bath ... he needs it!

They are hopeful to get us home this weekend, which would be amazing!

He has been so happy, and has loved his walks through the hospital Rog and I take him on. He is back to his old self, smiling and flirting at everyone passing by!

The more we're here at Children's the more we give thanks for this place. It truly is an amazing hospital, not just the cardiothoracic staff (which we're finding out is world-renowned) but the family-friendly environment.

Thank you for your continued prayers for healing for Luke, they are the biggest gifts you could give our family.

Movin' out of the ICU

We are out of the ICU as of today and onto the surgical recovery floor! After an EKG this morning, they saw that Luke's heart rhythm is back to where it should be! Our nurse, Kim, even did a "p-wave dance" in celebration! We now are praying it stays in sinus rhythm. So, it looks like Luke won't be needing a pacemaker at this time. Thank you for your prayers! God is so faithful.

Grandma Janis bought Luke his giraffe
when he graduated to the Giraffe Floor!

The move happened really quickly. We were again sharing a room in the ICU with a pretty critical case, a girl waiting for a transplant, and there was often a lot of stressful commotion on her half of the room. Our heart aches for that little girl and her family, and I'm sure the staff here were anxious to remove us from her tough situation. So, we said good-bye to our doctors and nurses and made the trip to Giraffe Floor 4. The move to the floor, although one step closer to home, means a change from 1 nurse: 1 patient care to 1 nurse: 3 patients care. Needless to say, this change can come with some new challenges.

Our next and last hurdle (hopefully) is getting Luke off his oxygen. We're not sure how long that will take, and that will determine how long we're here. But our room on the floor is much more spacious with big windows and a nice view, so that's all really nice.

Another huge blessing today is how much better Luke is feeling. He is so much more like himself again. We're not sure if that's because his heart rhythm has changed, or he is just daily feeling better. He is playful and smiley, babbling again ... it's so nice!

We give thanks to the Lord for a great day!

One week post-surgery

We are still at Children's and still in the ICU. The top part of Luke's heart is being slow to "wake up" and so he is still being paced by a pacemaker. They have just turned it off this morning to get a better idea of what his intrinsic heart rhythm is. It's kind of confusing, but basically there is a node in the atria (the top chambers of your heart) and a node in the ventricles (the bottom chambers) that both receive electrical impulses which make the chambers contract. If the sinus node (the one in the top) doesn't fire, the lower one takes over. That's called a junctional rhythm, which is where Luke is at. They want to see a sinus rhythm, where the top node in the atria dictate the heart rate. If that doesn't make any sense, it doesn't surprise me =) Who would have ever thought Rog and my vocab would include such terms??

In the short term, this means we have to stay here until 1) his sinus node starts working again, 2) his heart rate without the sinus node firing is high enough for the meantime, or 3) they decide Luke needs a permanent pacemaker put in. They've seen it take several weeks for that sinus node to become active again after such a major surgery. A lot of times, the heart tissue is swollen and can cause the inactivity.

Watch out. Nurse Kim is on a
mission to kill that thrush!


Luke with his purple-stained
mouth from thrush treatment

Luke also developed thrush yesterday from all the antibiotics he was on, so we think he's pretty miserable with that, along with not really wanting the bottle (we think it may bother his tongue?). This really is the hardest part of recovery. As a mom, you just don't want your baby to be miserable, and he is really miserable. It seems like every time he finally falls asleep, it's time for his next medicine or his vitals need to be taken. I just want to take him home. I know we'll get there, but it's tough.

Other than that, Luke is doing really well. Good blood pressure and sats, no fever, etc. We did get a few smiles out of him yesterday and today, so that was a huge blessing. And we brought his Baby Einstein DVD and that seems to help distract him for a little while =).

Please pray for Luke's heart to get back into a good strong rhythm and that he would not need a pacemaker. Please also continue to pray for his comfort level. Thank you all for your thoughts and prayers!

Day 5

Luke is doing fairly well ... this is the hardest part of recovery ... he is awake enough to be uncomfortable, but not well enough to be mobile yet. Although I did get to hold him a bit yesterday (a big production with all those wires and tubes!) You can just tell it is hard for him to get comfortable. He can't open his eyes very much since he is so swollen, but he's hanging in there. He gets all the grace in the world for being grumpy.

They removed all three of his chest tubes yesterday, so that was great. His lungs are sounding clearer, too. They are working today to get him to "diurese" which basically means they want him to let go of the fluid he's retaining, in his lungs and head. So we're celebrating his wet diapers! He is still on supplemental oxygen and the pacemaker wires to control his heart rate (it's too low on its own right now).

Luke is eating well from the bottle, which is a great thing and Rog and I are doing our best to keep him comfortable and to keep his busy hands away from his IV's.

Please pray that he would be able to rest well today and that God would take away any discomfort he's experiencing. It's going to be a tough couple days for him, but hopefully he'll be feeling much better by the weekend. They are guesstimating Monday we may move out of the ICU.

Luke's breathing tube is out!

They lowered his sedation medications when they extubated him, but increased them again an hour or so ago since he was NOT a happy camper. He was so hungry! They are waiting until this evening to feed him, so it's good he's relaxed again.

The breathing tube came out much quicker than the docs anticipated, so we are very thankful! Hopefully our little man will get a nice bottle tonight =)

Day 3

Luke continues to do well and is making good progress through his recovery process. They weaned him off his nitric oxide overnight and he did just great with that. They are hoping to take out the breathing tube later today since he no longer needs the nitric oxide. That's definitely a big step for him.

They gave him some donor blood this morning since he drained quite a bit last night, but nothing the docs are concerned about. Once he received the blood, his saturation levels went up and he pinkened up quite a bit. Also, his chest tubes (he has three) have really slowed down and are not putting out hardly anything, which is another good sign. The doctors are really pleased with how he's doing! His heart is being paced with a temporary pacemaker, but they think once they let him wake up a bit more, his heart rate should go up on it's own. They are keeping him pretty sedated with the breathing tube still in, but hopefully later today they'll let him wake up a bit more. It's even possible he can have a bottle tonight or tomorrow morning. I know he will like that!

Rog and I are doing well ... we got a good night's sleep last night in the hotel down the street and are mostly hanging out in Luke's ICU room. Luke did get a roommate yesterday so it's been a blessing to connect with another family going through heart surgery! This little boy is only 5 months old and it's his first open-heart surgery, so Luke is showing him the ropes =)

Please pray for continued progress and no complications!!!

Post-Glenn pictures

6:45 am the morning of surgery, waiting to take Luke back to anesthesia

Sweet, brave boy

Our wonderful nurse, Carlotta. She cared for Luke right after his first surgery as well. God is good!

Luke's I.V. tree

3 chest tubes, ventilator, arterial line, 2 IV's, pacemaker wires, multiple monitors

Surgery is over!

After a long wait, Rog and I have been able to see Luke in the cardiac ICU. His surgery went really well and Dr. Cohen was very positive about it. Luke is still completely sedated and breathing with the ventilator. He is also starting to swell like a little pumpkin. But, again, he tried to fight his way out of sedation too soon and the nurse had to give him more morphine. I love that about him!

We are thankful the surgery is over, but would ask for continued prayer for strength for what's to come.

Thank you! I'll continue to keep you posted. I appreciate all of you!!!

New Glenn date

Luke's bi-directional Glenn has been reschedule for Monday, August 13, first case of the day.

Wow, that feels a long way off, but Rog and I are trying to stay busy (and positive!) It helped when we found out Luke got bumped because Dr. Cohen got called in for a heart transplant. We were definitely rejoicing with the family who's baby gets a new heart!

So, now we're in the waiting mode again (and UNpacking mode), but I believe God is in everything, even in the details of when Luke goes in for surgery.

Rog and I will be driving up to Seattle on Sunday night to stay so we can avoid any I-5 craziness on Monday morning. Luke's surgery is at 8am, so we will be checking him in at 6:45am.

We'll keep you updated!

Surgery rescheduled

We got a call at midnight last night from Children's and Dr. Cohen had an emergency case and needed to bump Luke. So we are waiting to hear when is new surgery date is. Rog and I are doing okay, it's a little disappointing, but overall we feel really peaceful. We wanted to let all of you know who are praying and thinking of us!!! I'll keep you posted...

Pre-Op for the Glenn

We had a great day up at Children's on Friday for Luke's pre-op appointments. Everything went smoothly and we are set to head up there Wednesday morning for Luke's surgery. (They bumped us from the 7th to the 8th because of a newborn who needs the slot on Tuesday). We had a great consultation with Dr. Cohen (the surgeon) and feel much more prepared for surgery #2 and came away with some specific prayer requests! He really does think Luke will do great, but this is a tough surgery, probably the toughest of the three. Not necessarily a tough procedure for the surgeon, but a huge physiological change for Luke ... he will have to work hard to adapt to his new physiology. That's why recovery can be pretty tough coming out of this surgery. We are looking at 4-6 days in the ICU, and much of that on the ventilator. Also, we have been prepared for Luke to be really swollen and uncomfortable for several days. Dr. Cohen assures us it will go away, but he will definitely not look like Luke for a little while. It's a tough balance, because they want to keep him as comfortable as possible, but they also don't want him completely sedated because the sooner he starts breathing on his own again, the better. So, although we are ready and know that God's faithfulness and sovereignty are complete, we are definitely anxious and would covet your prayers. Here are some specific requests:

• Please pray for Dr. Cohen, for his health and safety leading up to the surgery and for a steady hand and focused mind. Mostly for God to guide him as he operates on Luke.

• Prayer for Luke's recovery - that he would come of the breathing tube as quickly as possible; that there would be no infections or complications that would keep us in the hospital; that he would be comfortable; for Rog and my strength and endurance

• There is a small, small chance that post-surgery, Luke's pressures in his heart and saturation levels would not be where they need to be and they would have to go back in and adjust some things. Please pray that this Glenn procedure would take perfectly!

• Please pray for wisdom for all the nurses and doctors who come in contact with Luke

We got to see a few familiar faces up at Children's on Friday, and were reminded how thankful we are for that hospital. We know we are in the best hands!

Rog and I thank you so much for your support and prayers and we will definitely keep you posted on Luke's recovery. We look forward to the day we are back at home, but between now and then we praise God that He will be walking us through!