Tuesday, July 14, 2009

A heavy post


I've had a harder time finding the words to write on here lately. We have had a really good summer in respects to family time and enjoying being more relaxed and lounging around with one another. Jay and I have started an exercise regime and made a pact to start eating healthier. We'll see how long that lasts.
But even amidst the joys of our everyday life these days, there has been a gnawing worry in the back of our minds regarding Nathan's health. Specifically, his breathing. Nathan has trunkal muscle weakness (try saying that three times fast), and his doctors are attributing the way he breathes to the fact that he seems to be weakest in his chest. His crazy breathing was the first clue after his birth that something was not quite right.
His breathing problems have changed a bit as he has gotten older, and they even got a LOT better there for a good while. It was during that time that we saw his classic belly breathing but with very little retracting. We thought that problem was getting better, so it has been quite a blow to us lately as we have finally realized and admitted that his breathing issues do seem to be getting a bit worst again.
This fact has become extremely evident each time I take pictures of him when he is without a shirt. We can't deny it then. I usually just delete these pictures right off the camera, but I have recently started keeping them. Each of these pictures were snapped as Nate was inhaling for a breath. As we inhale, our chest expands...Nathan's does not do this like everyone else's. Instead, his intercostal muscles are tugged inward and his belly expands, showcasing his entire rib cage. This is called retracting, and it is a huge sign of respiratory distress. Nathan pretty much stays in a constant state of respiratory distress, although spot checks of his O2 sats (always taken when he is at rest) have been normal. I do wonder what his O2 is while he is active though.
Mito is an energy deficient disease. The current concern is if Nathan's breathing, which is taking a lot more energy from his body to function, could be causing stress on other parts of his body. And also, how long is he going to be able to continue to breath in this manner?? These are the tough questions we have been trying to hash out with his wonderful Pulmonologist lately, and it has been rather discouraging as no one knows the answers.
We are currently trying to use kinesio tape via his physical therapist to help strengthen his diaphragm, but it doesn't seem to be helping in the drastic ways we are needing. This is why heading to Houston to see the mito doc there will be extremely beneficial to Nathan. When I saw this doc in DC, she brought up oxygen therapy via nasal cannula to help decrease the workload Nathan has for each breath. This has been a tough pill for us to swallow, as Nathan seems to be so normal otherwise, and we are hesitant to have to put him on oxygen each day. I understand her reasoning behind it, but this has been a very difficult decision for us to have to make. After conversations back and forth with our pulmonologist here, who agrees that an oxygen trial might be very beneficial to Nate, we have decided to hold off on this treatment until we sit down and get more information from the mito doc.
On another front to all of this, Nathan had a GI appt today and has officially fallen off the growth chart for weight, which has landed us an conference with the dietitian. However, he is still sitting at the 3rd% for his height/weight ratio, so they aren't talking about drastic measures quite yet. In the GI's theory, Nate needs more calories than normal due to him burning off so much more by the way he breathes. Unfortunately, he also has delayed gastric emptying and simply can not take in much more food while still being comfortable and not throwing up. This is the reason why Nate still drinks a majority of his calories as well...liquid goes through the stomach and intestines at a faster rate than solids. At this time, they said not to worry about weaning him off his bottles quite yet, and he may not ever really eat much volume in solids due to the problem with his emptying.

So it has been an emotionally taxing few weeks around here. We have quite a few big decisions ahead of us, I'm afraid. We are continually praying for guidance and clarity in the decisions we may need to make, but they still feel extremely overwhelming at times. And amidst everything going on, Nafey boy is still just as sweet, loving, active, and cantakerous as ever. He's a true boy through and through, that's for sure. These problems don't seem to slow him down too terribly much most days, and for that, we are indeed thankful.

13 comments:

mandie on July 14, 2009 at 1:08 PM said...

i am right there with you, mama.
praying for your sweet boy.

Anonymous said...

always in our thoughts and prayers. we love you!! Beth, Brian and Matthew

klawellin on July 14, 2009 at 1:58 PM said...

God Bless you and your family during this difficult time. I will pray for you to find the clarity you need to make these hard decisions.

Your family is in my thoughts and prayers!

Kimberly

Michelle Garvin said...

May God continue to give you guidance and signs. I know it is so hard to face these facts. I believe God placed you at that conference and time with that particular doctor to show you His way. I'm praying Dr K has some more clear answers for you and Nate's treatment and for peace and clarity.

Big hugs girlie!

MJ on July 14, 2009 at 4:59 PM said...

I was just telling Brenda that I never write on your blog but you probably didn't know that I check your blog at least once per day, if not more.
I'm sorry that Nafey is having breathing difficulties. I don't understand a great deal about mito difficulties but I do understand breathing. I hope that you get the help you need in Houston. I want you to know something, though. You're allowed to be scared, unsure, even unwilling. I know that equipment isn't fun to deal with. But you can do it because you're an amazing family and together you can do anything.
Love to you all
MJ (& Brenda too)
www.our-sma-angels.com/b4sma
www.caringbridge.org/visit/mjpurk

Amber on July 14, 2009 at 5:20 PM said...

Thank you everyone. MJ, I had to respond to you because you said it perfectly..."You're allowed to be scared, unsure, even unwilling." Yep, that just about sums up all of our emotions regarding this right now. You said it perfectly. Thanks for your encouragement...it means so much coming from you.

Jenny Hobbs said...

I've been thinking of you a lot. Hope we can talk soon. Hang in there - not long now until Houston and hopefully some better direction. Praying for you guys!

Jenny

Liz said...

You know I'm always thinking of you. There's nothing that's "normal" about any of these decisions but you're doing a wonderful job.

Hang in there girlie.

Lynnette Kraft on July 15, 2009 at 8:48 AM said...

I can imagine the emotional roller coaster you're on with this. Anna...breathing...heart rate...skin tone relate to lack of oxygen, etc. I've been there in that department of worrying and wondering. (Although I know your sons problems are very different than Anna's were).

Just keep taking it to the Lord and go and be alone (a drive out on a country road or something) and just let it all out. God wants you to continually share your heart and your fears with him and when you do, he'll flood you with his amazing and miraculous peace.

"Call unto me, all you that labor and are heavy laden and I will give you rest." Matthew 11:28
Dancing Barefoot on Weathered Ground

Jill on July 15, 2009 at 2:23 PM said...

Praying for wisdom, clarity, and peace...

Love, Jill

AmyG on July 15, 2009 at 5:19 PM said...

You all are always in our prayers! Praying that God directs your path during these hard times.

Nathan on July 15, 2009 at 9:10 PM said...

Okay, I guess I'm the only guy that reads this blog other than maybe your husband, but I had to comment on this one.
As a band director, I'm always teaching my kids to breathe with their diaphragm, when you breathe like this correctly, your tummy generally expands while your chest remains still. So are you saying that even though it appears that he is breathing in this manner, he isn't using his diaphragm? Thanks for clearing this up for me. You're in our prayers often.
-Nathan

Amber on July 15, 2009 at 10:05 PM said...

Nathan, from what we have been told, he breathes with his belly muscles because his diaphragm is weak. But yes, it is all pretty confusing...I still don't really understand how the diaphragm works exactly. We know (through a live x-ray) that Nathan's diaphragm does work...it is just weak.

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