Monday, December 12, 2011

The Surgery that Wasn't Meant to be...

So, as many of you know, Owen was scheduled to have bladder surgery last Tuesday. And, as many of you also know, the surgery did not happen.

I wish I could give you a complete, thorough explanation, but I cannot. The reason? Know one on this Earth knows. However, I am quite confident that our loving Creator held a far greater plan on Tuesday, December 6.

Owen's plan for surgery was to take about 4 1/2 hours. The plan was to take him back, have the urologist look into his bladder via camera (cystosocopy) and then allow the general surgeon to place his g-tube. After the g-tube was placed he would come talk with us and the urologist would begin the bladder surgery.

After we sent Owen back we took our places in the waiting room. I noticed several families being called to the welcome desk and overheard the receptionist tell them that their child's surgery had begun. She never called our names. After over and hour I told Michael I was a little concerned because she hadn't called us. He assured me everything was fine that they don't always have to do that. So, about 30 minutes later our name was called to go meet with our doctor. No surprise here, it was part of the plan.

We were taken back to a little room a waited a few minutes. Finally, the door opened, but it wasn't the surgeon we expected. It was the urologist. (Keep in mind we were thinking he was operating on our son at the time...) His words began like this..."Okay, so Owen is fine..." My heart sank. It was evident from his tone that something wasn't right. Then, walks our other surgeon. So where was Owen?!?

The doctors went on to explain that the surgery had been cancelled. When Owen was intubated and anesthesia was administered his heart began beating very quickly, and having a spontaneous rhythm. He was having a type of SVT called atrial tachycardia. They tried many things to stop his heart from beating so quickly, but his blood pressure began to bottom out. After several minutes, the operating team decided it was simply not safe to move on.

This has never happened to Owen. He has had 3 surgeries in this life, and 2 in the womb. Never, ever had an issue. Simplest answer: a reaction to the anesthesia. By the time Owen made it back to recovery and we were allowed to see him he was doing fine, with a perfect heartbeat and breathing on his own.

Owen's doctors were clearly shaken about what happened. He was sent to the cardiac floor for continuous heart monitoring for at least 24 hours. The results: A PERFECT HEART. :) The doctors did extra testing using an EKG and ECHO to test the shape and valves of his heart. Again, PERFECT.

Now, I didn't get to share the wonderful, amazing, most wonderful part of this "pretend" surgery, as we like to call it. :)

Owen's urologist was able to perform the cystosopy, as it was the least invasive part of his surgery. He used a camera to get an inside peek of Owen's bladder and ureters. And you know what? He was impressed! He was very pleased with what he saw and blessed us with the news that this surgery may have been unnecessary. However, should he actually need the bladder surgery, he can perform it at the time of transplant. So all the prayers for Owen's bladder have clearly been working. :)

I firmly believe the Lord was calling out to us last Tuesday. Never, never in the course of Owen's life (before birth as well) has a doctor been "pleased" with his urological system. We have prayed that Owen's bladder would heal and stretch, and we have seen His hand at work! I was talking with another kidney Mom before Owen's surgery and we were talking about how evident the Lord's hand has been in Owen's life. I remember saying that it's possible the doctors could go in and see a perfect bladder before his surgery. I think I said it, but I'm not sure I really, really believed it. Well, He's got my attention now!

Thank you, thank you for your prayers for our family and Owen. We were completely overwhelmed with the phone calls, texts and messages we received on Tuesday. We are forever grateful that so many of you love our family and are storming the gates of Heaven for our boy!

Continue to lift up Owen and be in agreement with us that his healing is coming. Continue to believe with us that his bladder will be healed at the time of transplant. After some extra heart testing and meetings among all doctors, we should have a transplant date. There was talk of moving up the transplant date, but it will need to be worked out with our donor and doctors and apparently scheduling isn't easy! Just be in prayer, that whatever the date, we will know that it is blessed by the Lord and He is guiding every decision made during this time.

Resting with Mommy before going down to surgery

We got to ride on the stretcher together. :)

Waking up after "surgery". Not happy about the 2 IVs!

Back home and back in action! He really wants to crawl!

Yet again, another early Christmas gift given by Daddy. Who could resist that smile?!

A happy, little, miracle!

Tuesday, December 6, 2011

A Change of Plans

So, today's surgery didn't go quite as planned....as in there wasn't a surgery.

After about 1 1/2 after we sent Owen back to surgery we were called to meet with one of the doctors. We were expecting this, as the plan was to place the G-tube first (about an hour procedure) and meet with that doctor as the other surgeon began working on Owen's bladder.

Apparently as Owen was sedated his heart began going into unacceptable rhythms, called SVT. His heart rate would jump from the 120's to the 200's in seconds. His blood pressure was also bottoming out to the 40's/20's. So, the doctors tried a couple of different things, but eventually decided it wasn't safe to continue with the procedure.

However...the urologist was able to do the bladder scope (cystosocopy) and take a peek into Owen's bladder. If you've read before, you know that this bladder surgery was necessary to prepare for transplant, as he felt Owen's bladder was not trustworthy and far from being ready to accept a new kidney.

Well....are you ready?? I'll just go ahead and quote the doctor, as he said it best....

"I would transplant Owen tomorrow if everything were in order and ready to go."

There is a reason this surgery didn't go through. I firmly believe God intervened to either:
a. Show us there is problem with either how Owen's heart handles anesthesia or he has some kind of reaction to to the anesthesia.
b. Owen's bladder is being HEALED and will not need surgery.

(I prefer option b.)  :)

However, we don't know anything yet. Owen has been moved to the cardiac floor for 24 monitoring that's a bit more advanced than the regular. Of course, his heart rate has been nothing less of perfect since coming off anesthesia. :)

Could this have been a fluke? Yes. Could Owen need a different type of anesthesia? Yes. Could there be an issue with how Owen's heart handles anesthesia due to his kidney disease? Yes. Are we all confused? YES.

So in all, it really stinks that Owen went under anesthesia "for nothing" and feels yucky. It stinks that he still has that pesky NG tube. BUT...it's wonderful that he did not have a bladder surgery that he may never need!

I knew God worked in mysterious ways, and I knew He was wanting to show himself to me, and I think he's got my attention now. :)

So basically, we don't know how long we will be here. We don't know what caused the issue during transplant. We don't know if they will move the transplant date.

What do we know? We know that God is good, God is powerful, and God is here. Owen urologist said he can perform today's scheduled surgery at the time of transplant.....however he may not need it after all. :) He was quite pleased with the change in his bladder that he saw today.

So, friends, I ask you to continue to storm the gates of Heaven for Owen. We've seen that God is trying to tell us something today. We may not know exactly what it is, however we have to stop and listen. Pray that this heart rhythm was a fluke, and just God's way of stopping a surgery He didn't plan for Owen to have. Pray for wisdom for our doctors. That they can develop a plan that will benefit Owen best and that we will feel comfortable with.

Thank you so, so much for all the prayers and encouragement we have been receiving today. It's almost overwhelming when we see just how many people are lifting Owen's name to the Lord. Keep praying...He's obviously listening! :)

"You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the LORD will give you, Judah and Jerusalem. Do not be afraid; do not be discouraged. Go out to face them tomorrow, and the LORD will be with you.’” 2 Chronicles 20:17

Surgery Time

We watched our son be carried away to surgery about 30 minutes ago. We were able to be in the "holding room" with him until the doctors were completely ready. I don't think there are words to describe the emotions running through my body. There are too many to process at the time.

I can say, that with great fear, comes great faith. As much as I wanted to push through those doors and run down the hallway that my boy was travelling down, I was okay. Okay, in knowing that our doctors are well trained and skillful,but more than okay in knowing that someone else is directing this surgery. The One who carefully knit each cell together in Owen's body and planned his life in perfect order to glorify a God who saves.

Owen's surgery should be starting soon. It is a little after 8am (eastern time). Please continue to pray for wisdom for our doctors as we have unfortunately been reminded several times about just how "complicated" Owen's anatomy is. Pray that our doctors' hands will be blessed by The Great Physician and Owen's surgery will go quickly, without complications and a fast recovery.

The surgery is scheduled for 4 hours and 24 mins. They are planning to extubate him following surgery and give him a shot similar to an epidural that should relieve pain for about 8 hours. He will also have a morphine pump and scheduled Tylenol. Please pray that Owen will not be in any pain, as he has already had a difficult time realizing he isn't home and there have been so, so many doctors and nurses coming in to examine him, he was quite fussy before surgery began.

"But He said to me, 'My grace is sufficient for you, my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may work in me."
                                                                                                                          -2 Corinthians 12:9

I am weak. Especially today. But, I think God needs me to be weak. So that through my overwhelming weakness, I will see Him work. I will look to Him and give Him all. And through this, I will see with my eyes what my heart longs for. I will see faith that can move mountains and an everlasting love that holds my sweet baby tighter than I ever could.

"He gives strength to the weary, and increases the hand of the weak." Isaiah 40:29

Saturday, December 3, 2011

Two Days and Counting...

Although I am living in a complete state of denial, Owen's surgery is quickly approaching. I am having a hard time with this one. Owen's last surgery was when he was 2 months old. I can still remember every. single. second of walking him down to the OR, waiting the 5 hours that felt like 5 days, and then finally seeing him for the first time after surgery. It is absolutely painstaking to walk your sweet child down to an operating room and trusting a team of strangers (however very well qualified) to protect your child from harm as they operate on his tiny body. Simply put: it's gut wrenching. It rips apart my insides and my heart bleeds for my baby as I would give anything in the world to take his place.
It is during this time that I must fight hard to not let satan creep into my heart. It is so easy for me to fall into a dark sadness, one that aches for my baby and also, for a life that I had planned, but one that I know deep down wasn't meant to be. I fall into the "why my baby?" "why my family?" I can get jealous of families who's biggest worry is an ear infection while my son's life is supported by a machine, until he receives a transplant. It's easy to fall into the trap satan so cleverly plans out for me.

So, on top of the necessary prayers I beg you to pray for my son and his surgeons, I also ask for prayers for myself and Michael. Pray that our hearts will remain steadfast, chasing after the Lord and praising Him for this cross He has chosen us to bear. Pray that as we bear our cross, we will obediently honor and serve the Lord who has chosen to bless our lives with Owen. Pray that our faith will be contagious! Pray that we will resonate the Lord's love and His words will be on our lips as we spend our upcoming time in the hospital.

But of course, I plead with you to have Owen on your heart this Tuesday. His surgery is first thing Tuesday morning. If things are running on time (a rare occurrence) it should begin around 7 am (eastern time). We have been told to expect it to last around 4 hours. Pray that the Lord will guide the surgeons' hands, that our surgeons will be blessed by the Lord and will know that their patient is a precious, child of God and represents the mighty power of a Lord who continues to work miracles.

I will update the blog as much as possible, for those who do not have facebook. Please know that we covet your prayers and are so blessed by the outpouring of love we have felt for our family. This trial is far from over, and I know I'm not finished growing. The Lord has worked greatly in our lives through this and we have truly seen the 'goodness of the Lord in the land of the living!'

Our confidence remains in the Lord and our faith will not be shaken. Going through a journal I kept during my pregnancy, I found a folded up piece of computer paper. Not long after we found out about Owen's problems I began searching for miracles performed in the Bible. I began making a list and got up to about 48 miracles (a few were repeated). I can clearly remember taking this paper (along with a stack of others in which I wrote verses to use as prayers and encouragement) to every single appointment I had until Owen was born. It is highlighted, underlined, "starred" and worn out, but I love it. I remember reading these verses and miracles aloud in the waiting room before every appointment. And you know what? I wasn't scared. I had a confidence and a peace that only comes from the Lord. So, I will be taking my stack of papers with me on Tuesday. I'll be pouring over them during my four hour wait and I will be begging, pleading and crying out to the Lord for more. More love. More hope. More peace. More of Him. The Lord has shown Himself and His mighty presence in every moment of my son's life. From the moment of his birth, to the tiny moments forever embedded in my mind: first smiles, laughs, words and more. He's here. And He will meet me in that waiting room on Tuesday. And praise God that He's big enough to comfort me and guide and important surgery all at the same time. This isn't too big for Him, I just have to let go, step back and let Him work.

I'll leave you with some new, oh-so-adorable pictures of our miracle. Bring on the prayers, we're ready.

"He performs wonders that cannot be fathomed, miracles that cannot be counted." Job 5:9

"But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not grow faint." Isaiah 40:31
 "The Lord your God is with you, He is mighty to save. He will take Great Delight in you, He will quiet you with His love. He will rejoice over you with singing." Zephaniah 3:17

"As for God, His way is perfect; the word of the Lord is flawless. He is a shield for all who take refuge in Him." 2 Samuel 22:31

"For you created Owen in my inmost being: you knit Owen together in my womb. I praise you because Owen is fearfully and wonderfully made; Your works are wonderful, I know that full well. Owen's frame was not hidden from You wen he was made in the secret place. When Owen was woven together in the depths of the earth, Your eyes saw his unformed body. All the days ordained for him were written in your book before even one of them came to be." Psalm 139:13-16