Monday, July 13, 2009

Post Second Heart Cath

It's been an incredibly stressful and emotional day today. I apologize in advance for the length of this note -- there's a lot to be scared about, a lot to be thankful for, and a lot we need prayer for -- as well as my lack of eloquence as I pound out this message.
My last note explained the three options we had for attempting to lower Luke's heart rate. The Amioderone and Esmolol combo continues to be futile, though they continue to give him maximum doses of the Amione and high doses of Esmolol. This past weekend they attempted to feed Luke very small amounts of Pedialite to see if he could digest and absorb something. It did not go well. Instead of digesting the Pedialite, the liquid just sat in his intestines and his belly became distended again. So they have not attempted the Flecanide. However, our day doc over the weekend (Dr. Meyer) suggested that we try a medication called Dejoxin. When Luke was about a week old, his heart rate spiked into the 220s bpm. They gave him Dejoxin to help control this arrhythmia. That arrhythmia was of a different type than the one he's been in since his surgery, but we know that he is responsive to the drug Dejoxin. The Dej was started yesterday about 2:00. We were told it could take up to several days to know if it would affect his arrhythmia.
Last night we had one of the coolest experiences since the start of our stay here at Medical City. Dr. Meyer is a doctor we've gotten to know a little bit over the last several weeks. He is an ACU alumni, and we've connected over that. Last night before Dr. Meyer went home, he came into our room and in his "doctor voice" told us and the nurse that we were "going to pray for this baby." So Dr. Meyer, our nurse Kelly, and David and I all laid hands on Luke while Dr. Meyer prayed, even using medical terms, acknowledging that God knows how to return Luke's heart to a "normal sinus rhythm" and asking him to do so by whatever means necessary. I was overwhelmed with emotion to hear one of Luke's doctors call on the name of the Lord on his behalf.
This morning, Luke's case was again presented during the hospital's weekly cardiology conference. All the medical professionals that attended this morning (including Dr. Kao and Dr. Mendeloff) agreed that they should perform another heart catheterization. (For those of you just tuning in, that is a procedure in which a tiny catheter or catheters are inserted into an artery or vein in the groin and threaded up to his heart. The catheters are then used to explore and measure inside the heart, including rhythms and pressures.) I was informed of this decision about lunch time today, and they started getting Luke ready to take him down to the cath lab about 1:30. Not a lot of time for mamma to get mentally or emotionally prepared. David had a full and hectic day at work today, so he rushed up here as soon as he could.
The cath took about two hours. My parents have been here on a visit for the weekend, and they waited with us. Dr. Kort came out and told us that the cath went very well. They discovered that Luke's profusion (blood flow out to the body) is good. His pressures are good. They didn't find anything different than they expected as far as the heart rhythm. They did deduce that his profusion will work even better if they give him a higher concentration of oxygen through his ventilator. Also due to Dr. Kort poking the catheter around in his heart for a couple hours caused Luke's heart rate to go down to the 130s. He told us that he expected this rate to be only temporary.
Just a few minutes after Luke got back up to his room from being in the OR, David and I went into our "Family Conference." This was a meeting with pretty much everyone working with Luke: mom and dad, Dr. Mendeloff and his nurse practitioner, Dr. Kao, the cardiac intensivist (regular day doc, her name's Dr. Tia), nurse manager, and Luke's social worker. We all talked together about the plans they have for Luke. Basically for this meeting we got that everyone hopes Luke's heart rate will stay put (130s). If it doesn't, we'll go ahead and try the Flecanide, even though he hasn't been able to digest the Pedialite. If that doesn't work, we have no other option than to do the EP/Oblation study (see previous note for explanation). We talked about some other things, including that Luke is going to undergo a test to explore what's going on with his intestines probably tomorrow, then we ended the meeting. When we got back to Luke's room, Dr. Tia and Dr. Kao where hanging around Luke's bed, and Luke's heart rate was in the 110s. They had gotten and EKG, and discovered that this heart rate was another kind of arrhythmia. His atrium was beating at a different rate than his ventricle and only 1 in 2 beats were showing up on the monitor. His real heart rate was back above 200.
After a lot of discussion, Dr. Kao decided that they should shock him (crash cart...the whole 9 yards) to see if they could get him out of that rhythm. It took awhile to set the whole thing up so they could monitor him via EKG during the whole process. They sent us to sit just outside the door to watch through the window as they shocked my infant son. It wasn't quite so dramatic as a scene from ER, but I cried through the whole thing. David and I always feel 10 times better when Dr. Kao's in the room watching over Luke.
After several more minutes, Dr. Kao came out and told us that Luke's heart had settled into a normal sinus rhythm in the 110s. Top and bottom of his heart are beating at the same rate. It's a normal, regular, acceptable heart rate. David and I are praying that we just received our miracle. We didn't know what it would take, didn't really care, prayed for God to do whatever was necessary. Right now it looks like it took some poking around and one big shock. Dr. Kao told us to expect that Luke's heart rate will likely creep up to the 130s-140s (and hopefully stop creeping there) as Luke comes out of sedation and recovers from the cath. As I'm writing this, Luke's heart rate is in the 120s. His blood pressure and profusion measures to the top and bottom of his body are on the lower end of acceptable, trending upwards. A few minutes ago Luke's blood pressure dropped, so they took him off the Esmolol, and it returned to fairly normal. Dr. Stromberg (night doc) just came in and told us that the Amioderone has been doing what it's supposed to do, and if we continue him on the Amioderone, we should be able to maintain this rhythm. David and I are struggling not to get over excited. Our official position is "cautiously optimistic".
So, right now, as the tears flow, it looks like we got our miracle. God used the heart cath as the tool to lower his heart rate. Folks, it wasn't designed to do that. It wasn't supposed to lower his heart rate - we didn't even know to hope that it could do that. God continues to amazes, shock, and delight us with his answers. You as our family and friends continue to be faithful in prayer, and God continues to be faithful in his provision. Let it be said that GOD IS FAITHFUL. GOD IS AWESOME. GOD HEARS THE PRAYERS OF THE RIGHTEOUS. And GOD IS GOOD ALL THE TIME. I can say "all the time" because I've been through hell as well as the highs. It is my wish that all hearts belonging to the eyes that read this turn to YHWH, the God of Miracles. Even if this is a temporary reprieve from the outrageous rhythm we've been at for four weeks, God is still worthy of all honor and praise.
Thank you for your prayers. We ask that you pray fervently that Luke's heart rhythm would stay put in this beautiful rhythm and rate. We ask that you join us in praising God for his faithfulness and mercy.
Blessings and Love,
Rachael & David

4 comments:

  1. WOW! Why is when God does something we ask Him to do, we stand amazed? He does things in the ways only He can do. What a witness of His love, grace and competence. We will continue to lift you all up. Our daughter had to have the oblation procedure after an ER trip where her heart rate was over 300 for a substantial amount of time. I stood in the ER and watched them stop her heart. Emotions that cannot be explained go through a momma's heart and mind. I know just a wee bit of what you are experiencing. There is nothing worse for we parents than watching our children suffer and not be able to "fix it" for them. The good news is that we have a Father to call ABBA, who is also THE GREAT PHYSICIAN!!! Praying for a more peaceful restful day of healing for you all. God is a constant source of love, hope, and answers in ways no one looks for. Vicki

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  2. I just reread this post and watched the slideshow. I believe God has great plans for Luke. I believe he put this struggle in our lives because he wants us to put our trust in him. Rachel and David I also believe God has a plan for you guys. He's revealing his plan slowly and (right now) painfully. But know that He is in control. "For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us." Romans 8:18

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  3. was overwhelmed with emotion when I read this latest report. What a blessing that they met the doctor with an ACU background!!!!!!

    I have been unable to get an email out to them, even with the latest info you gave me. If you are in touch with them please tell them I am with them in prayer daily and looking forward to continuing proof that our God is holding them in His arms of love and moving all the medical efforts in the right direction.

    In Christian Love,

    Rich
    San Antonio

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  4. All I can say is WOW--I stand in awe of Him........

    Barb
    San Antonio

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