Monday, September 7, 2009

Update - September 7

That past couple days have been very up and down...mostly down, actually. Nothing too serious, so don’t worry, she’s just having a hard time.

Saturday night after we left her she started having a tough time again. The doctors told us when we arrived Sunday morning that she had several episodes where her oxygen level dropped (not too low, but low enough the doctors didn’t like it) and she presented with “seizure activity.” They tested her medication levels again and they were still low, so they gave her another large does of the seizure medication. She showed some seizure activity when we were there but in the few hours we stayed, she seemed to stabilize again. When we went to see her in the evening, she was struggling a bit, but was fine again by the time we left.

This morning when we arrived to see her, we found that the same thing had been going on - dips in her oxygen and some possible seizure activity. They did increase her regular dose of the medication again and we were hopeful that would take care of it.

When we went back this evening, they had taken her out of her regular “baby cage” crib and put her back into a baby toaster. The reason for this is that she was again showing signs of seizure activity. When she’s all bundled up, they can’t see it as much and they needed to keep her unbundled and clothing free so they can watch her closely. They put her in the toaster to keep her warm. She did OK the rest of the night and was breathing consistently with good oxygen levels.

The reason this is not so good is because the level of her medication is quite high. To put it in perspective, last weekend when she was having the repeated, very obvious seizures, her medication level was at 27. It was about that earlier this weekend when she was struggling but today, her level was at 45, higher than the therapeutic level. The fact that she seems to be having what they call “breakthrough” seizures on this high a level of medication is not a great sign. They are concerned that the current medication might no longer be controlling her seizures and they will have to switch to another medication. The problem with the new medication is that is has to be given through and IV, which would seriously delay her homecoming. They will wait a couple days and watch her to see what she does and the neurologist will decide what to do depending on how she behaves.

So, there’s still a lot to pray for. The doctors said she’s still OK to have the GI test tomorrow, so we’re still hoping everything will go as planned with the G-tube surgery. Her test tomorrow is at 10am, so please just pray that everything goes smoothly. Please continue to pray that we can get her medication levels figured out and for no more episodes of low oxygen or seizures. Above all, please continue to pray as we do for complete healing.

I’d love to say that we’re taking this all in stride and that none of it scares or worries us anymore, but that would be a really huge lie. Every day that something goes wrong, there are feelings of defeat, sadness, frustration bordering on anger...all those good things. But in the midst of all of those emotions, God continues to give us grace for each day. When we come home at the end of the day, we leave Lydia breathing peacefully and taking in plenty of oxygen. We know that’s God giving us peace knowing that she rests in His hands when we’re not there to take care of her. If she wasn’t OK, we’d probably never leave her.

Although we’d always rather that she didn’t need all of these prayers, we are amazed to see that God has gathered people around the world to pray. We’ve got people all around America, in Rwanda, in Thailand, Nepal, Bermuda, Panama, Serbia, Scotland, England and Columbia (that we know of) in prayer for our sweet girl. We’re in awe of the support for our family and will be thankful always, should God choose to heal her or not.

I’m sorry to end everyone of these the same but thank you for your prayers. You have no idea how God is using them to sustain us.


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  2. Jen,

    You should seriously consider contacting a doctor at Johns Hopkins about the Ketogenic diet. If Lydia is already having to move to a second med it is at least worth a shot. Having a g-tube in place will even make it that much easier. Just a thought. We continue to pray!


  3. Aimee, they're working on doing metabolic tests to determine if a change in diet would be in any way beneficial for her. We're still waiting to hear back from them. Thanks for the recommendation!