"He shall feed his flock like a shepherd: he shall gather the lambs with his arm,
and carry them close to his heart, and shall gently lead those that are with young." Isaiah 40:11

Thursday, June 10, 2010

One Day at a Time

This morning we packed the gang up and headed to the Children's Hospital.  We met with the Cardiologist and the on call Palliative Care Doctor.  This will likely be a weekly meeting.  We really like our Cardiologist. In fact, we have had a very good experience with all the Medical staff that have been involved in Rachel's care. And everyone has done such a tremendous job at keeping each other updated on any new developments along the way.  

So, I am going to try and summarize what we talked about - and there was alot of information.  Dr. Fruitman will be sending us an email later also summarizing the details for us.  We often leave these meetings thinking that everything is clear in our minds only to be throughly confused when we have to explain it to you...(plus we did the meeting with two wiggly children) So, I may tack on some of her email later for those of you who like to know the medical terms etc..

- Rachel's oxygen levels have dropped.  They measured low to mid 50's.  (she was at 78% at birth) The nurse measured her foot first (this was in the 40's) but the 50's are likely more accurate.  This is low.  That said, Rachel still has alot of color and the Cardiologist had expected to see more blueness.  I think I have noticed more blueness after she eats. Generally, there are still unknowns about how much oxygen is getting to the lungs.  Basically, no-one really knows what her heart will do and how long it will work! Perhaps weeks or months even?

- Rachel is now 4 pounds so even with the extra feedings, she has lost weight.  

- Rachel's echo was presented to the Western Conference of Cardiologists on Tuesday (4 western provinces)  The opinion given there was the same as we had expected.  They too felt that our decision for palliative care was the right one, given the complexity of her heart.  One Cardiologist suggested that perhaps the collateral arteries leading off of the Aorta (to the lungs) are actually ducts instead.  Not much difference - the arteries would gradually narrow and ducts close up.  Dr. Fruitman thinks that because Rachel does not appear to have breathing difficulties yet, the 'ducts' theory may be accurate.  (ie. they are still 'open' and as result, the curly cue veins coming back into the heart will not affect her in the same way if she had arteries that were closing) We asked if this might mean that her death could be more sudden and she said it was still likely to be a gradual change. (ie. one duct may close before the other) This also means that Rachel may not have to experience painful breathing - i was glad to hear this one.  yikes, are you confused yet? i am.      

- The only option for surgery is to separate the collateral/duct arteries from the aorta and put in a shunt to aid blood flow to the lungs.  This surgery is very risky - there is a very high mortality rate.  And a very low success rate.  The outcome stays the same - her heart can not be fixed. This surgery is still a 'palliative' one.  If we want the surgery, this should be done sooner, rather than later.  (over time the low oxygen flow damages the lungs) We have decided not to do it.    

- The tummy ultrasound results: confirmed missing kidney, presence of a spleen, isomerism (reversal of organs) Also, something about the intestines.  In a healthy person, these are 'tacked down' in the body.  They are not in Rachel.  This means there is a possibility of them becoming twisted. A very low chance of this - this usually happens in older children - but something to watch out for none the less.  The sign would be constant upchucking (my word) of her food. 

- We are concerned about her increase of mucus secretions - this is not connected to her heart condition.  Perhaps it has to do with her 'syndrome'.  There is still something genetic going on which we may never have a name for or understand.   

Dave and I still find these appointments to be emotionally draining.  It is hard to hear these things, even when we have heard much of it before.  Thank-you for your prayers and your emails/notes/cards! Please keep praying for us that we will take this ONE DAY AT A TIME.  I remember when we first got the results of our ultrasounds, how overwelming the future felt.  The thought that we might have a child with severe disability & health issues felt like an incomprehensible burden.  My mom asked me a question often in those first days. "Can you do today?" I tried to focus on just the day ahead, the tasks that needed to be done and I found it more manageable.  I know it's not always that easy.  Sometimes, I know I just can't do it.  I need God's help for each minute/hour.

It has been good for me to feel weak.  Because then I have found God to be strong. 


Kathy and Carl said...

That's a lot of information to process. I can't imagine! And yes, God is very very strong and He will continue to carry you.

Kisses to Rachel and Ethan and Abigail from our kids!

Tricia said...

much love. from us all.

Melissa said...

I understand where you are. Pallative care was our option for our son too. I think it was the hardest decision I've ever had to make in my life, but the most selfless. It takes the power of God and knowledge of his grace to get you through. The road ahead is not an easy one but never stop believing and praying for a miracle. I had resigned myself t the fact that my boy was not going to live long and he has thus far defied all odds, not following the plan so many doctors had laid out before us time and time again. But even if he doesn't make it through his next surgery in a month, I know that God gave him to me for as long as he was suppose to be here and every breath was a gift. Please check out NILMDTS. They provide professional photography at no cost that will help you to always have her with you even when your memory fades. I have made some wonderful friends through them even though my son still lives. They are some of his biggest supporters because they know what it's like to lose a precious life too soon. My heart is with you.

Angela said...

Thank you for the update on what Rachel faces and what you're decisions will be. Your family is never far from my mind...

Valerie Ruth said...

if this hurts my heart it must just tear yours to bits. i'm sorry...

Carol Taves said...

We are keeping you in our prayers. I'm so thankful for these three weeks you have had of loving Rachel and enjoying her in reasonably stable health. Enjoy the blessing of each good moment, and trust that God will give you what you need for each difficult moment.

Sharon said...

That was a very clear explanation, didn't lose me at all. I believe the choices you are making are the best choices. My faith is strenghtened by reading your words. It is an honor to be your friend and witness your courage. I love you so much!

Rhonda said...

I read your blog. I just recently lost my son to hlhs w/ intact atrial septum. He was a poor candidate for surgery. We were told he would not live long and he surprised us all. We took him home the next day and he lived 9 days. He was so beautiful and during that short period brought so much joy to our lives. I know exactly how you feel and what you are going through. It definitely is not easy.