Wednesday, March 17, 2010

Contemplating The Next Step


Tuesday morning we woke up extra early (4:30am) so we could make a very early appointment in Denver for Kimble to undergo a Cardiac MRI and a 3D Echocardiogram. His doctors needed the information from these studies to make a more informed decision on the next stage of Kimble's heart surgeries.

Kimble had to be under anesthesia, as well as be intubated, for these procedures. Even though it wasn't surgery, it still made my heart go pitter patter. It is very hard. Every time I have a nurse take my baby from my arms, and tell me to say goodbye, it just...I don't know. It hurts. They see me crying. They tell me something like "Oh, he'll be fine! Don't you worry." But I do worry. I've watched him come out of anesthesia before. I've seen him struggle to live after his heart surgery. Even though this wasn't surgery, the same feelings were there. I absolutely hate handing my sweet baby over to someone else, and then have to turn around and walk down the hall, with my arms empty. It's just wrong.

After about three hours, Kimble was brought out of anesthesia, and he was HUNGRY! That is always a good sign. So after about half an hour of feeding him (his last meal was 3am, so he definitely needed to make up for lost time!) he was stable enough to be released from the Radiology department. After that, we made our way up to the 3rd floor Cardiology wing, so we could discuss with our Denver Cardiologist, Dr. Adel, about the MRI results.
While we were waiting for Dr. Adel to review the information, Kimble had his height and weight checked again (almost 15 lbs!), and everyone raved about how fat and healthy he looked. He also got some routine tests done, like an EKG...


...and some routine developmental checks...



And after some love from Daddy, we got to work discussing the next step for Kimble, in terms of his cleft lip surgery, as well as what his next heart surgery would entail.


Here's the thing with Mr. Kimble. His heart defects aren't "textbook". Because he has three serious heart defects, he doesn't fit into the quick fix category. Let me explain a little bit about the structure of the heart, to give you an understanding of his complications.

The heart is divided into four parts, essentially. There is a right side and a left side. Likewise, each side has a top and a bottom. The top chambers are called atriums, are are holding areas for the blood that is coming in, and at the bottom of each of these atriums, there is a valve that allows blood to go into the bottom chambers. These bottom chambers are called ventricles, and they are the pumping chambers. From these ventricles, blood gets pumped out, through another valve (on the right side, it's called the pulmonary valve) and then the blood leaves the heart. When it's pumped out of the right ventricle, it goes to the lungs to get oxygenated. From there, the blood goes back into the left side of the heart, where it then gets pumped throughout the body. Once it finishes it's course through the body, the blood comes back to the right side of the heart, to begin the cycle again.

Kimble has defects concerning the right side of his heart. The tricuspid valve is the valve that allows blood to enter the right ventricle, from the atrium. The pulminary valve is the valve that takes the blood that leaves the right ventricle, and directs it to the lungs. Kimble's tricuspid valve is tiny and weak and hardly lets any blood enter the right ventricle. Because of that, his right ventricle is tiny and muscleous, and isn't quite functioning very well. In addition, Kimble's pulmonary valve was missing, or unformed, when he was born. During his first 5 weeks of life, that pulmonary valve was ballooned through, and is now an opening, which allows for blood to leave the right ventricle.

So what the MRI showed, is that the right ventricle isn't getting enough blood to sustain Kimble's life. Currently the BT Shunt that was placed during Kimble's 1st heart surgery, is the only thing that is keeping Kimble alive. Needless to say, we are very thankful for that shunt!

The next stage of the 3 stage surgery that was originally planned for Kimble, is called the Glenn. After the blood has circulated through the top part of his body, it is directed back to the heart via the superior vena cava, where it is pumped back to the lungs to get oxygenated again. The Glenn procedure reroutes this blood directly to the lungs, connecting the superior vena cava to the pulmonary artery. This makes it possible for the lungs to oxygenate the blood, without the right ventricle needing to pump the blood to the lungs. This is a great thing, but puts a lot of pressure on the left side of the heart, which would be doing the work of two pumps.
Just for some quick information, the third stage of the heart surgeries is called the Fontan, and it essentially does the same thing as the Glenn, only it reroutes the blood coming from the bottom half of the body. Thus, the entire right side of the heart would be bypassed (not used, ignored, forgotten about, disregarded) This surgery, if it comes down to it, would happen between 3-5 years of life.

Because Kimble's right ventricle, although very small, is actually pumping blood (albeit a very small amount), his doctor's don't want to dismiss it entirely. They want to see if it can be made useful, because if they can get the right ventricle to pump enough, it will lead to a better quality of life for Kimble. Two pumps are better than one, afterall! So the problem isn't quite with the right ventricle, but with the tricuspid valve. If there is some way to tweak the valve, surgically, or do something to it to make it stretch open, be bigger, work better, then the doctor's think the right ventricle will respond positively, and such drastic rerouting of all his major arteries could be avoided.

However, in all likelihood, Kimble will need to have the Glenn, along with surgically tweaking the tricuspid valve, but we are trying to avoid needing to do the Fontan.

For the next little while, as the doctors discuss what is best for Kimble, we wait. This isn't a problem because Kimble is healthy and strong and THRIVING right now! While we are waiting on his heart decisions, Kimble will have his cleft lip surgery. That will most likely be next month. His next heart surgery will most likely be around June or July. So, we'll see.

15 comments:

Colleen said...

Wow, you are like a textbook; I feel very educated! You made me cry reading about them taking Kimble away. It wrenches my heart! I am so so so so so glad he is thriving and gaining so much weight. That is so awesome! I will continue to pray for sweet Kimble and that the doctors will know just what to do to give him the best possible working heart and that the Lord will guide their hands. Love to you and that dear boy!

runningfan said...

Thanks for the update! I was anxious to read it from afar. Best wishes for your sweet baby boy.

Sharon said...

wow. thats a ton of information, i don't know how you absorb it all to explain it so well. we love Kimble! he's so chubby and sweet, and loves his momma (and daddy too)

linda said...

You will continue to be in our thoughts and prayers. We also will be having surgery at children's hospital next month. Our 4 year old will be having surgery for his kidney reflux.

teensy_dc said...

That is so much to take in. Sweet Kimble is in my thoughts. Lots of Love to you and your family.

Julie said...

Wow- those decisions are so hard! I've been anxiously waiting to hear the results. I'm glad he's thriving and that those "non-traditional" options still seem at least possible.

I've been thinking and praying for you. Your description of handing him over brought tears to my eyes- it is a feeling that makes me sick whenever I think too much about it. Give Kimble a hug from us!

Maynards said...

I feel like I just got out of a sports med class. You sure know your stuff! Thanks for the update.
Our prayers will continue to go your way, as always. You are all so amazing.
Let me know if you need any help next month when he has surgery.

Carol said...

So much information to be considered for his well being! It sounds like the Dr's are working on the best possible plan for him and we will continue to keep him in our thoughts as well as the rest of your amazing family!

Adri said...

Seems like you know more than you ever thought you'd care to know about the heart, huh? Funny thing is, the more you learn about Kimble's heart INSIDE, the more you learn about your own heart's ability to love him on the outside. What a sweet, sweet boy. SOOO glad he's thriving and growing and developing. He is a daily reminder that miracles really do happen.

Jennifer Magreevy said...

I know exactly how you feel about your child under anesthesia. My son has been monitored since birth for possible brain matter abnormalities, hydrocephalus, and other conditions. While he hasn't had anything come up yet, he has had two CT Scans and an MRI. I was allowed to stay with him in the room while they gave him the gas to put him to sleep, and I'll never forget his expression as he went to sleep with his eyes open. We then had to leave for the doctors to administer the IV fluids and intubation tube. The MRI was quite quick, and he awoke ravished as well! We go back to his neurologist next month (his MRI was at 4 months, he is almost 18 months now) to discuss his development and the possibility of a checkup MRI this summer. Best wishes to you and your family as you tackle each challenge!

Jen Sue Wild said...

I love you and your family so much know that my heart thoughts and prayers are with you.

Give Kimble and the kids extra kisses from me tonight Especially Miss K/G..

purejoy said...

it's amazing how fast you become an expert at something out of necessity. you did a lovely job explaining everything. i really hope the teaking of his tricuspid valve does what the doctors are hoping. i know this is alot to take in, and then cleft lip surgery on top of all of this. i know this is hard for a mother's heart (and a daddy's too!) but one step at a time, right?
we'll keep y'all in our prayers!

Queen of Chaos said...

I have to agree. Anytime I have to give a nurse or Dr. permission to look at my baby it's hard. I haven't been in your position where my baby had life or death momnets often- so I can't fully understand how hard it really is for you. But, as a mom I can feel your pain. I know how hard it would be for me if I had to 'give' my baby up to even to the most capable hands.

I'm amazed at the technology we have at this time. It's such a blessing and comfort.

We'll be crossing our fingers his surgery is after the reunion. :)

Will his cleft surgery be outpatient?

kdaygirl said...

I am super excited to have the neices and nephews around for a while, my kids are to!

faith said...

I just happened upon your blog and noticed your son's problems. We have to realize sometimes that the Lord still performs miracles but he also heals through physicians. My son was born w/ Single Ventricle w/Pulmonary Stenosis,& Transposition of the Greater Arteries. He was a big baby, 21" long and 9lb 4oz. The doctor heard a murmor and transported him to Emory's Egleston Children's Hospital in Atlanta, GA(the name at the time) by ambulance, 2 days after emergency c-section delivery. We followed by car, this was a 125 mile trip on a rainy New Year's Eve. His PDA remained open allowing a heart cath (in order to diagnose condition) w/o having to open it, and it closed on it's own w/o medication or surgery. His first surgery was months later and was a Right B/T shunt. His color was blue until the next procedure. He was weak and it took him 18 months to learn how to walk and he did not gain much weight, but he was a little daredevil! He went to day care along w/ the other children. He never had any other major problems. We lived on pins and needles waiting for the next surgery, not knowing what to anticipate. At the age of 5 he was able to have the Glenn and Fontan procedures together and come completely off all meds but one aspirin per day. He never had to have a any blood other than direct donor which came from myself and my mother at the 1st surgery and the cell saver machine was used the 2nd time, recycling his own blood. Immediately after the Fontan, his color was "pink"....(He did have quite a few heart caths in between surgeries.)
My son is now 23 years old and the doctors state he should be the "poster child" for CHD. He has done exceptionally well and we owe it all to Jesus Christ. He went through school and is now a Cert. Surg Tech.
Sometimes the future may look dim, not knowing what to expect, but our son Daniel is a living example that Jesus still performs miracles. The doctors told us that if he had been born years earlier, he would not be here today. As time progresses, there are more advances made in the medical field and more is learned,etc. Just continue praying and give it to the Lord and depend on him. All things are possible,.....