MRI Results

I FINALLY get to be the bearer of GOOD news and share with you that Nathan's abscess has SHRUNK!! Praise God!!! We were very happy to receive this news, of course. The neurosurgeon will be back tomorrow and we will find out what his recommendation is. He is very conservative so we are hopeful that he will want to wait on surgery. If it were up to our ID doctor, Nathan would have had the surgery already. I don't know what's up with her but she really wants him to have this surgery. The MRI from March 5 indicated that Nathan's abscess had not shrunk at all from the time he was discharged from the hospital in February. The measurement was 4.6cm. When we came back to the hospital on March 12 because of the stroke they decided to do another MRI, which took place on March 13. Apparently, the abscess from that MRI measured 4.1cm. We were never told about this shrinkage. I would like to assume that they were mostly focused on the stroke and that it was an oversight. The MRI he had yesterday indicated the abscess measured 3.9cm. We are just so thankful for all your prayers. God is so good and we believe He will continue to shrink this thing. I couldn't be happier with how much it has gone down in a mere 18 days after having not budged in several weeks. At this rate it will be gone long before our ID doc's prediction of 1 year.

Nathan is still having issues with his oxygen levels. After a couple days of asking about his hemoglobin levels and questioning whether or not they've taken too much blood and getting nowhere, one mention to our cardiologist and the next thing we know, Nathan is getting blood. This was a little frustrating to us. Whenever we mentioned this, most of the docs on the floor would act like his hemoglobin was fine (and it is actually high for someone with a healthy heart). But it's not fine for Nathan and thankfully, our cardiologist gets things done. Nathan is on oxygen and for the past couple of days he could barely eat without his oxygen levels dipping low enough to need an additional oxygen mask. He is hanging out in the 50's and 60's which is definitely below his baseline. However, when he eats or gets out of bed or even exerts much energy, he is going down to the 30's. The only time he is doing normal for him is when he is sleeping!

Also, if you can believe this, Nathan has tested positive for the common cold. You wouldn't think this could be possible with all the medicine he gets. Anyway, our cardiologist said they will not do his heart surgery until 10 days after his cold is gone (I would assume this would be the case for his brain surgery but hopefully that's not an issue). I completely understand this but goodness, we just want him to get this repair. We are hoping that if they decide not to do the brain surgery that maybe he could be stabilized enough to go home and then he could come back for his heart surgery.

A couple more things, we're still worried that Nathan is being traumatized here. I think he feels like he has no control over what people do to him and maybe feels like we don't even help him. He is "passing out" for the slightest things. If strange people come into the room and start to do anything to him, he screams and then just goes to "sleep." It's hard to know if this has anything to do with his oxygen intake but he never used to do this. It started with being stuck by the needles so often and now he does it more frequently. He had an echocardiogram today and did it then. That's just an ultrasound of the heart so it doesn't hurt at all. It's just people can do whatever they want to him (from his perspective) and he has no say. Again, he doesn't know that he's sick and needs these things. Please pray for his emotional state.

It also looks like he might be getting the same type of rash around his new line that he got around his old one. Not good! We need this line in and I don't know what they will want to do if it gets really bad. Not to mention the fact that it is awfully uncomfortable to have itching and/or pain to deal with. This little boy has had so much to deal with.

Again, thanks for praying. We are so thankful for every single prayer said on our behalf. We know that there are many of you praying, even if we don't know you personally.

On my way home with Isabel last night we were listening to, "You Never Let Go" by Matt Redman singing up a storm of praise for God's goodness. We have our rough spots but we never question God's love for us and for Nathan. Here are the lyrics. Maybe they will be an encouragement to you.


Matt Redman - You Never Let Go

Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I’m caught in the middle of the storms of this life
I won’t turn back
I know You are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

Chorus:
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We’ll live to know You here on the earth

Chorus:

Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You