Friday, August 28, 2009

Some changes on the horizon


My little Nafey boy was such a trooper during his tests today. The pulmonary team administered emla cream on his wrists and then his pulmonologist later injected some lidocaine to numb the rest of the wrist. A member from the NICU team came to do the arterial sticks, and when she couldn't get it on the first try, they immediately called a member from Shands Cair...the transport team...the elite of the elite when it comes to doing difficult procedures. It only took her a quick minute to gather the sample from his artery, and she was called back to do the second one as well. I have to say that I am once again thankful and happy with the care we have received at Shands.
They did the first stick to get a baseline for him and then put him on oxygen for 30 minutes before they did the second blood gas. In usual Nafey fashion, his ABGs had quite a few abnormal levels (the poor kid has never had a normal blood gas), but the one we were concerned about the most was the lactic acid level. At his baseline reading, his lactic acid was elevated. After he had been on oxygen for a while, his lactic acid had dropped quite a bit, putting it in the normal range.
As tough as having oxygen will be, the change in his blood gas results was extremely encouraging and gave us hope for a potential treatment that could help him along this journey. With the lactic acid levels decreasing quite a bit with this treatment, this should give us enough evidence to prove to our insurance company that Nathan does indeed need oxygen as a supplement. The change it will be for him and our family is great, but this can provide so much good growth and help for him in so many ways.
Furthermore, Nathan's pulmonologist was very excited about these results and mentioned that it might make a good publication since these results (LA levels pre- and post-O2) have not be tested or seen in any other mitochondrial patients, to our knowledge. At least, he hasn't been able to find anything on it. He was merely doing this test on a very good theory he had, and it appears to be true in Nathan's case. I am once again impressed with our Pulmonologist and appreciate his caring nature and interest in Nathan...so I was extremely sad when he told me today that he will probably be leaving the program here in a little less than a year. When you see and converse with the medical team on a regular basis, quite a few of them become like friends and family. It's sad when those ties come to a close over time.
The current plan, barring any insurance issues, is to put Nateman on O2 for a month solid and see if he can gain some weight. If he gains weight, we know our theory behind trying this is true for Nathan...he just requires the extra oxygen to help his body function at a normal level. If he continues to stall or lose weight, our theory is kind of thrown out the window. It will take a good 2-3 weeks before they get everything squared away with our insurance company and our home health agency. As much as it hurts us to have to put Nathan on oxygen, we are also excited about the benefits he might gain from this type of therapy. And believe me, it has taken quite a few long and emotionally exhausting months before I have been able to say that. It was just a month ago when we were saying "absolutely not" to the idea of putting oxygen on him...it is truly amazing how God can change your heart.

It may be a trying month around here after the tanks are delivered, but I sincerely believe that God has opened this door up for us and is directing us in the way we should go regarding this situation. Thank you so much for your prayers and messages today...they truly do mean a lot to us.

11 comments:

wandaconner on August 28, 2009 at 9:43 PM said...

We're praying!
Wandy

Jill on August 28, 2009 at 11:13 PM said...

Thank you so much for taking the time to give us this detailed update... We'll continue praying, specifically that the O2 will do all that we hope it will do!

Emily on August 29, 2009 at 2:41 AM said...

I'm praying hard for your precious boy!
-Emily

Emily on August 29, 2009 at 10:10 AM said...

Wow wow wow. So much to think about for you and Jay. I do love seeing God work through you; thank you so much for sharing all the trials you go through regarding Nate. Continuing in prayer...

Kayla on August 29, 2009 at 10:21 AM said...

You have amazing strenght. So glad God is in control and taking care of Nathan. He is in the best care possible.

Anonymous said...

Dido on Jill's comment: You are an inspiration to us and We Love You Guys and Gals Dearly.

Dar Dar

Melodie on August 29, 2009 at 9:34 PM said...

((HUGS)) So glad you have such a wonderful pulmonologist.. prayers that Nate will adjust to the O2 w/out putting up too much of a fight and start to put some weight on.

Anonymous said...

Amber & Jay,
We have been praying that the Lord would give you strength in this decision. I am so thankful that God has led you to doctors that can help you in these difficult medical decisions. We will continue to pray that the 02 will help Nathan and his weight and overall health will improve.
Love to you all,
Sara & Donnie Stroud

Meg on August 31, 2009 at 10:17 PM said...

I'm praying for your family, Amber. (((HUGS)))

Michelle Garvin said...

This is very interesting to me and I'd love to learn more with this relation b/w lactic acid and O2! Praying the insurance works out quickly and smoothly and that you see good results!

~sydney~ on September 2, 2009 at 3:31 PM said...

Praying for Nate. What a cutie! Lovin the photo shoot!

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